Help For Parents with Sick Kids

A New Beginning

2009-05-16T06:42:00.003-05:00

The following entry is longer than my typical entry. It is a brutal and honest look at me and my emotions as a mother dealing with a sick child. It is vulnerable and was written to reveal my humanness in hopes of encouraging you through the times when you will struggle. It may give you a glimpse of why I am so thankful for grace.

E's testing last week was one of the most traumatic that she has faced. We did not tell her until the morning of the testing that we were going. She cried a little, knowing the discomfort of catheterization all to well, but tried very hard to find a brave face. She did fantastic through her ultrasound as she always does, but her nervous chatter and somewhat silly vocal inflections could not hide the fear she was feeling. We had a long wait between testing and she played with a dollhouse in the waiting room, escaping to an imaginary world where tests like this do not exist. When her name was called, she bravely grabbed my hand and followed the tech to the radiology room. It was time to gown. I hate that part. It is the part where she has to accept that this is going to happen and she has no say. The staff positioned her on the table and the child life specialist did her best to distract E from what was coming. Then we waited again. Why, for the life of me, can hospital staff not all be ready when the patient is ready? I get that they are busy. I've been there and done that. When dealing with children, don't they get it that the longer things are put off the worse it gets for the child?

The nurse entered the room to catheterize E. She was told up front that E cannot use betadine cleanser. A bottle of hibicleanse solution waited nearby. The nurse prepared the cath kit and proceeded to dump betadine over the cleansing cotton. She was reminded about the hibicleanse and did her best to separate the cotton and find some to use. All of this prolonged the wait. It was time. The nurse had trouble. I was holding my baby. She was wrapped in my arms and she was screaming. "No. Don't let them do it. It hurts! Mommy! Mommy! Make them stop!" It is agony as a parent. The nurse paused. E thought she was done and stopped sobbing to catch her breath. It was not done. They needed another set of hands to restrain her. It was heartbreaking. They started again. The screaming resumed and tears ran down my cheeks along with my sweet child. Alas the catheter was placed. Usually this is the time that E calms down, but they have never had so much trouble and she was still hurting. She kept crying and asking to take it out. "It hurts. It hurts!" And we waited again, this time for the radiologist. Nothing consoled her. She cried through the whole test. Even as I was telling her that her surgery had worked, she cried. It was beyond words. She continued to whimper as we got her clothes back on. She still hurt and she was so sad. She was defeated. She was helpless. She is almost five and I could not refuse her as she begged me to carry her through the long halls. She clung, so vulnerable, and my heart hurt.

Here I thought I had dealt with the injustice, that I had come to a "good place" in dealing with the emotions of watching E go through all of this. I have worked through the emotions and grief over and over. It is ongoing. Despite the peace I have found, I still had to face the hurt, the pain, the fear, and the frustration again. Then there is anger. The anger over the big question at the center of it all. It is the question that has no answer. Why??

We stopped by a favorite ice cream shop on the way home and I talked with E about what a day this was to celebrate. I let her make the phone calls to share her good news. Her reflux was gone. Her voice was weak from the screaming and it missed a sense of the joy that it usually holds, but as she told person after person I began to see that sparkle that is E returning to her eyes. She was done with this. She was going to be well. We were over this hurdle.

In the following days we found time to go out for a celebration dinner. She was thrilled. That night, though, she wet her bed. It was not a good sign. She cried that her bottom was hurting her. I was so hopeful that she was just irritated from the procedure. The days that followed confirmed that I needed to take her to the lab to have her urine checked. More bedwetting, more discomfort and her bladder spasms were increasing in frequency and intensity. After two years I can pretty much tell if she has an infection. The relief was that it had not reached her kidneys this time, so she wasn't so sick as times before. The lab confirmed that she was infected.

I had been thinking through the procedure when my suspicions of infection grew. I went through training in nursing school dealing with catheterization and sterile technique. It hit me. The hibicleanse. The nurse had sterile gloves on and grabbed the unsterile bottle to soak the cleansing cotton. The she proceeded to cleanse and cath E without changing her soiled gloves. I was so frustrated that I had watched it happen and not had the presence of mind to call the nurse out on her error. Granted I was distracted by holding my crying child and I wasn't watching every move the nurse made, but I am her advocate and I let E down. I had not protected her.

That is where my anger started to grow. I was angry at myself. I was angry at the hospital for the time we had to wait for each person to get to the x-ray room that day. I was mad at the nurse for being negligent. I was mad that E had such a hard time this time and now she was sick because of it. I was mad that she had been through all of this. I was just mad.

I stewed when I got the call confirming her infection. I stewed when I started E's antibiotic therapy. I stewed when I was changing wet linens in the middle of the night. I stewed as I folded laundry. I stewed as I watched her have bladder spasms. I wanted someone to pay. I wanted some kind of restitution for E for having to go through all she has been through in the last two years. I made a very tearful call to the hospital and could hardly control my emotion as I spoke with the administration department. They would have someone call me the next day to go over the details of the incident.

That night, after the kids went to bed, I was wiping down the kitchen counters and I asked my husband, "What do you want to come from the conversation that I have with the hospital tomorrow?" I had not phrased it well, because I really meant to find out it there was anything specific that he wanted me to express in the conversation. He took it as what kind of action did I expect the hospital to take because of this? In truth, it was not something I had not considered in all my stewing. We are not the suing kind and we talk frequently in our home about skyrocketing medical costs and ridiculous medical malpractice suits. When it is your baby being wronged, it is hard not to wander down that road in your mind. My ugly humanness considered the thought, no one can make what has happened over that last two years go away, but maybe E could get a settlement to better her future. That would make up for some of what she had been through, right? After all, she was infected as a direct result of a medical error.

My husband and I continued through a heated discussion about this whole topic. I was emotional. He was concrete. The nurse had made a mistake. She screwed up. It happens. E is okay. She is responding well to her antibiotics and in a few days, she will be well again and we will move on. It was then that he nailed me. He told me that because I hadn't felt well over the last few days all of this magnified. He said that I was still thinking over and grieving the terrible time that E had through the procedure this time. He said that I have lived in such crisis mode over the last two years and so much has revolved around my E and her health, that we have to adjust the way we do life. She is better (minus her lifelong stuggle with bladder spasms) and we need to celebrate that fact not stew over something so small as an uncomplicated bladder infection that will really not impact E's life in the long run. He recognized that I have been living this day in and day out with E, running to the doctors offices, dealing with insurance companies, monitoring diet, elimination, medications, looking for improvement, watching when she is sick, etc. He reminded me that there just may be part of me that is overwhelmed at what life may be like now that she is well. My husband is a wise man and he was dead on, even on things that I wasn't willing to admit. It was hard to hear, but it was just what I needed.

I sobbed. It was the kind of crying that is reserved for those times when words cannot give relief to the emotion within. It was the kind of crying that makes it hard to breathe. I cried all the tears that I have been holding back trying to be strong and have the "right" attitude as we have watched E battle through this. I cried for the time we have lost. I cried for all of the pain she has been through, the things she has missed. I cried that we had told her she was well and wouldn't be sick anymore to find that she had an infection a few days later. I cried that I had not been able to protect from having to go through any of this. I cried tears of relief. Tears of joy that she has a future. There were tears of fear as our identity is changing as we are transitioning from having a sick kid. What might be next in this sinful world where trials and tribulations are reality? I cried tears of forgiveness as I let go of the anger toward the people in the medical field who have failed us, who have failed E. I cried until may swollen red eyes didn't have tears left to cry.

My tears marked an ending for me. Or, maybe, a new beginning. The next day, I had a very good conversation with the hospital. I was able to talk through what had happened in a spirit of truly hoping that the staff could learn from this mistake and though I had failed to recognize, speak up, and protect E, perhaps the results of this incident will protect another child. Maybe it is your child.

Celebration

2009-05-16T06:27:00.002-05:00

Last week, E, underwent testing to evaluate the results of her reimplantation surgery. As the dye entered her bladder I watched the screen in nervouse anticipation as each picture progressed. Alas, her bladder was full, and there was no reflux seen. What a beautiful picture! What relief to see that her surgery worked despite the poor state of her bladder wall. Her kidneys are protected. It was the result we have prayed for, hoped for, and longed for. It is time to celebrate!

Things to Take with You When You Go to the Hospital

2009-04-25T10:46:00.003-05:00

Hospitals are not fun places for kids. Believe me, pediatric wings are much improved from when I was a kid, but they are still not fun. When E has to go to the hospital whether for inpatient or outpatient procedures, we always pack an activity bag. Depending on the hospital/facility that you are visiting, there may be a lot of kid-friendly resources available, or there may be very little. Here are some suggestions.

1. Color Wonder markers and coloring books. What a great invention!
2. Portable DVD player with a few select movies. With the advent of Redbox, you may want to drive by and pick up a rental for $1 so your kiddo has something new to watch. Most facilities have TVs readily available, but depending on the time of day there can be few choices for young kids.
3. Beads and elastic string. E likes to make necklaces and bracelets for the nurses.
4. A book with a collection of stories.
5. A sticker book. Kids love stickers, don't they! E likes the ones where you find the right sticker to fit a vacant shape.
6. We don't have a hand-held gaming system, but if you do, it could come in handy! I remember playing hours of Tetris in a hospital bed when I was a kid.
7. MP3 Player
8. Small quiet toys (my little pony or matchbox cars)

If your child is inpatient, you may want to include:
- a comfy robe
- special slippers (that can either be disinfected or thrown away after the hospital stay - you can only imagine the things I have seen on hospital floors!)
- a special stuffed animal - sometimes kids need to have something to love on!
- thank you cards - during down time, let your child write some thank yous to people that have come to visit, or brought balloons/gifts/flowers, etc. It will help cultivate a thankful heart!
- treats for the doctors, nurses, and other hospital staff. E had so much fun handing out small bags of candy to the nurses and housekeeping staff. They appreciated it too. An appreciated staff may really come in handy when you are inpatient!
- plenty of extra undergarments and jammies if your child does not have to be in a hospital gown
- we even had a computer with a web cam so that E could talk to her brothers and grandparents since we were too far away for them to visit. It was something she looked forward to each day.
- "feel better presents" We were really blessed that when I was in the hospital as a kid and then when E was in the hospital people wrapped little gifts to encourage us. It was not something we asked for, people just did it! As a kid, I was so excited each time I got to open a gift. It broke up the days and gave me something new to play with. For E, we used the gifts as incentive to do things that we painful such as walking after surgery and doing her incentive spirometer breathing exercises. It was just a motivating factor!

*Don't forget to bring things for you, the parent, too. Whatever your guilty pleasure is, allow yourself some. Mine are skittles and diet sierra mist. Bring easy to read books, puzzle books, or your computer, whatever helps the time go more quickly for you too!

What tips do you have for making the hospital a little bit more tolerable?

Trust Your Gut

2009-04-25T09:50:00.002-05:00

If you have been a parent for very long, you will discover that you sometimes have an instinct about your children. When E was about 18 months old, I left her with her great aunt while I went visit my obstetrician. As I drove away from the house I had an uneasy feeling that something was wrong which is not normal for me. I brushed it off and continued to the doctor. After my visit, as I was scheduling my next appointment, my cell phone rang. It was E's great uncle and the first words out of his mouth were, "Ashlee, don't panic. E is okay, but she was bitten by our dog and it is a pretty deep wound on her head." She ended up needing fifteen stitches in her scalp.
I was talking with my sister-in-law who has been at this mommy-thing longer than I have about how I had an uneasy feeling leaving E that day. She replied,"You will learn to trust that instinct." Now, I don't want to make this a bigger deal than it is. It is amazing, though, that God sometimes seems to prompt our hearts at times to be cautious in a certain area or alarm us that something is wrong.
When your child is sick, you need to be even more in tune with this instinct. When I was nine, my appendix ruptured. It was three days before the doctors discovered that is what had made me so sick. I had emergency surgery and then was supposed to get better, but I did not. The doctors kept waiting to see if I would be better in the afternoon, the next morning, etc. Instead, I grew weaker. Unknown to me at the time, one morning, the surgeon got a little more than he had bargained for. My mom was trusting her gut and took him into the hall to assert her instinct. She told him that something was really wrong and demanded that they do a CT scan to check my abdomen. They found a softball sized abscess had developed between my bladder and uterus. I underwent another emergency surgery and my parents were basically told that my life was on the line. My mom saved my life. Literally, it was her demanding action that got the doctors moving.
If you are experiencing a situation like this, don't ignore the feeling in your gut. Even if you are wrong in your instinct, you are never wrong to advocate for your child. If you don't know what to ask, or expect the doctors to do, ask other health care professionals what they would suggest. Ask for another opinion. Sometimes fresh eyes can see the situation more clearly. Utilize the nurses. Not all nurses are great, but there are some who have been doing this a long time and have seen other patient scenerios played out. The veteran nurses do this day in and day out. They see the problems and solutions. They live pediatric medicine. Ask them what they would you do if this was their child? Ask the doctors that as well. Make it personal to them so that they see your child as the loved little one that you see. You never know, that still small urge or instinct may be right on.

Swallowing Pills

2009-04-25T08:16:00.004-05:00

Because E had just turned three when she started getting sick, she was prescribed all of her medications in a liquid form. Thankfully she is a compliant child with a desire to please her parents, so we never had a huge battle over taking medications. Some, however took more determination on her part to swallow them! Have you ever smelled some of the liquid medications that we give our children? They are so super-saturated with sugar to disguise the medicinal taste, it is a wonder our children do not promptly throw them up!
Because she so detested the taste of one of her medications, I started to contemplate how I could teach her to swallow pills. I have vivid memories of standing over my kitchen sink with my parents on either side of me coaxing me to swallow a pill. I remember the gag reflex and how unnatural it was! My parents finally resorted to telling me that my younger cousin was able to swallow pills, so I should be able to too. My fierce competitive nature kicked in and I willed that pill down.
I wondered how I could make the experience an easier one for E. I asked the pharmacy if they had an placebo (sugar pills) that I could buy to have her practice swallowing them. If we were not successful, then at least we were not out the medicine! They looked at me as if I were crazy. I then bought some tic tacs and thought I would have her try to swallow those whole, but my wise mother reminded me that tic tacs take awhile to dissolve, so if it got caught in her throat, that could be an issue. She suggested mini M&Ms.
When it was time for a refill on E's medication, I went ahead and got the pill form without any trial runs with candy. The medication was really small, so I earnestly hoped that it would not be a problem for her. I nervously handed her the pill that night and explained that she could not chew it, but needed to just swallow it. With anticipation of three year old drama and gagging, I reached for a cup of water and then turned to E. "Where is your medicine?" I asked. She simply replied, "I swallowed it like you told me too." That was it. She didn't even use water. It was just gone. How anticlimactic after all the nervous anticipation of a battle! It was then I realized, because she was so young, she didn't think that there was anything abnormal about swallowing something whole.
There was no issue after that. She takes everything in a pill form now and that makes medications a whole lot more tolerable. For that matter, our son began to also, at two and a half years old. How often do we, the parents, make situations more difficult because of the experiences we remember from childhood? Not everything that they will experience has to be like I remember it. Maybe I should remember to give my kids a little more credit - they might just surprise me!

An E-mail to Another Parent Facing Reimplantation for Their Child

2009-04-25T08:04:00.005-05:00

I had a mother contact me whose daughter will be having reimplantation surgery for VUR. She asked for any advice that I might have for her as they move closer to surgery. After putting together my reply, I thought it might be useful to others facing this surgery, or really, any child's hospitalization. I hope it gives you some suggestions!

I am so glad you wrote! Sorry you guys are having to go through this, but I am so glad that you have found a great doctor! I am not sure how much detail you want, but I will be honest with you about what to expect. Hopefully you will have a best case scenario and she will recover really quickly!!!
Before the trip, I would read your daughter as to how much you should tell her before surgery. If you think it is helpful to her, you may want to take her to the hospital ahead of time. A lot of times, hospitals do tours for peds patients so that their anxiety level will be lower the day of surgery. We did not do this for E, but she has been to the OR a couple of times before, so she already knew what to expect. We did get her some books from the library and one at the gift shop at Mayo that talks about being in the hospital and how things sound, look, smell, etc. I think it just helps them to be prepared. We didn't talk specifics really with her, just that they were going to be fixing her reflux so that she wouldn't get sick anymore and so she could stop taking her antibiotic. When she asked questions, I answered them the best that I could without lying. Sometimes my answer was that we would ask that question when we got to the hospital - it seemed to pacify her.
If anything, I would just make sure that you are ready to entertain a little one for a few days! We took sticker books, DVDs, coloring books, small toys, candy that she doesn't normally get, special slippers and a robe, new nightgowns, and our family and friends sent "feel better presents" that were great incentive to get her moving after surgery when she really didn't want to. The days can get long while you are there!
If you haven't already worked with a child life specialist, I would recommend calling and asking for one to meet with you when you get there. They are great about providing distraction and helping to answer any questions that your child may have. They probably have them throughout the hospital each day, but if you call ahead, they will be sure to see you guys.
As for what to expect, I am sure you already know most of this, but expect her to be tired the day of surgery. She will probably be uncomfortable when she wakes up, but a lot of this will depend on what they do to keep her comfortable. At Mayo, the anesthesiologist administered a caudal block (injection at the base of the spine to help control pain - similar to an epidural but the medication catheter does not remain in place) in the OR. You may want to ask if they do something like this. It really helped E stay comfortable immediately post-op. It wears off in less than 24 hours.
She will probably have a PCA (pain pump - with a button that you can be pushed to administer pain medication on demand through the IV). Don't be afraid to use this if she is uncomfortable. Know that it can sometimes cause mood irritation and can be constipating, so weigh how it is effecting your little one. You definitely want her to be comfortable, but the sooner she can be off narcotics the better. We used E's PCA for about the first 24 hours and then rarely after that. She seemed to do fine with Motrin and Tylenol for the most part after that.
I don't know if they talked with you about bladder spasms at all, but I am sure you have read about it online anyway. A lot of her comfort will depend on how her bladder responds to surgery. Some kids have minimal bladder spasms, others are severe. They will probably treat her with Ditropan to minimalize her spasms. It can be pretty dramatic if her spasms are severe, so just be prepared. The good thing is each spasm does not necessarily last very long, but they may or may not come frequently. Once her catheter is removed, spasms may cause incontinence, so I would recommend taking some pull-ups. It will be a whole lot easier than changing undies and nightgowns multiple times if she has trouble. E has a spastic bladder already, so she is used to dealing with the pain, but I didn't think about taking pull-ups (thankfully they had some on the floor, but they were huge and designed for boys). I was not prepared for how her body would respond. She literally was having a spasm and going to the bathroom every 20 minutes once her catheter was removed. This is not normal, so hopefully your experience will be better than that. She also had nighttime incontinence for about 8 weeks after surgery, so we did pull-ups for awhile at night when we got home, but she is back in undies all the time now.
I am sure you know that her urine will be bloody for several days if not longer. She will probably pass blood clots that are pretty uncomfortable, so voiding is kind of dramatic at first. You may want to practice some deep breathing with her to help her relax when she is trying to void after surgery. It may help to tie a feather to a string or take a pinwheel and have her blow the feather or pinwheel while she urinates to help her relax. This will hopefully improve each time she urinates!
The one regret that I have was not being more proactive about E's bowel movements. She was 5 days without one and that caused us some issues. I would recommend taking some raisins if she likes them and don't be afraid to ask for some Colace for her if her bowels don't start working within 24-30 hours after surgery. Constipation makes bladder spasms worse, so I would recommend staying on top of it!
She may or may not have an external stent after surgery. This is basically a tiny catheter that is in her ureter and will be coming out of her abdomen. It may or may not bother her. They put these in sometimes because they can easily assess that both kidneys are putting out good urine. It will probably come out the day after surgery. It is held in place by one suture on the surface and probably a suture under her skin. They remove the suture outside but it takes a little pressure to pull the tube because of the internal suture. You may her a pop as that suture breaks loose. It may be uncomfortable for your daughter, but once it is out, it feels better overall.
Another suggestion is take a special pillow or a soft plush stuffed animal that she can hold when she coughs. It really helps the pain when they can hold something plush firmly against their abdomen when they cough. E used a big soft bunny. We used it under her seat belt on the way home too so that her seat belt wasn't directly on her incision for our 7 hour drive.
There is no doubt that surgery is tough on a kid, but they are resilient. Her attitude will most likely reflect yours, so the more optimistic and encouraging you can be, the better she will respond. Long days in the hospital can be emotionally and physically exhausting, so don't forget to take some comfort things for you too!
I hope that things go so well for you guys. I know I gave you a lot of information- maybe more than you really wanted! Let me know if there is anything else I can tell you. It will be such a relief for you when you know it is done!

Protecting Your Marriage

2009-04-13T08:48:00.005-05:00

It is no secret that marriage is hard. There are good days and bad. It is reality. Add a sick child to this reality and it complicates the matter even more. If you want your marriage to survive, you must invest in it!! This is true, sick child or not.

When I was researching for this topic, I wanted to find some information on inexpensive getaway ideas to refresh your marriage. I googled the terms "inexpensive getaway marriage." You know what the first item that popped up onto the screen was? "MISSOURI DIVORCE - $299" This hit me two ways. First, the irony amused me. It was kind of funny because apparently the wording I chose to google appeared to have told the search engine that I was looking for an inexpensive way to get away from a marriage! Second, it was sad. I was googling with the intent to strengthen a marriage and my first option to look at was a divorce website.

This led me to looking into divorce statistics. The most recent numbers I could find were published in February of 2009 from June 2008. Looking at the 12 months prior to June '08, there were 7.1 marriages per 1000 people and 3.5 divorces per 1000 people. Some would say that this means for every 2 marriages today, there is one divorce. Yikes!

In any marriage it is important to spend time alone with your spouse. If you have a child with health needs, it is beyond important it is a must. When facing a health care crisis, it is easy to take your spouse for granted. It is easy to withdrawal or take out your frustrations on your spouse because he/she is an easy target. It is easy for the marriage relationship to receive the least of your attention. Make a point...a priority to invest in time completely reserved for your spouse.

Your finances may be tight. You may be afraid to leave your sick child. You may not have family in close proximity to help with childcare. The excuses could keep coming. Here are a few solutions.

If finances are tight, ask a friend to watch the kids for 24 hours and make plans to return the favor. There are some great ideas here for a way to getaway with your spouse without leaving the house!

If you are afraid to leave your child, stick close to where he/she will be and keep your cell phone handy! If your child has extensive health needs, hire a home health nurse if finances permit.

Learn to swap childcare or barter some of your services with friends if you do not have family living close by to help watch the kids.

Get creative. Look for ways to tell your spouse that he/she is still the most important human relationship that you have. Any 24-48 hour getaway will be cheaper than a divorce. Unless you live in Missouri, where apparently you can get one for $299.

My Faith

2009-04-13T08:01:00.003-05:00

Yesterday was Easter Sunday. In light of this our family has been discussing what Easter really means. These discussions have reminded me that I have not yet shared exactly what I believe, though many of my posts have eluded to my faith.

I was raised in a Bible believing home where I came to know about God and His Son, Jesus, early on in my life. I believe that God is our Creator. I believe that I am a sinner and that has separated me from God. I believe that Jesus was born through immaculate conception to a virgin. I believe that He was sinless and righteous. I believe that He was beaten, bruised, bloodied, and crucified in a sinner's death because of me. I believe that because of his atoning sacrifice, I have the ability to have a personal relationship with God. I believe that Jesus was laid in a tomb and arose from death. I believe that He is alive and present. I believe that because of forgiveness and Christ's payment for my sin, that I am forgiven and that I will someday be in heaven with God. My belief gives me hope and joy through tribulation.

I have taken solace in the fact that my God has watched his child suffer. He knows the agony a parent feels seeing their child in pain and the inability to intervene. His love extends farther than I can comprehend. The biggest way my faith has impacted our journey is coming to the understanding that God loves my little E even more than I do. She is His child. Despite His goodness, He allows us to face difficulties. The beauty of it is that he also says that he will use those difficulties to benefit us. He is shaping me, my husband, my boys, and my E to be more like Jesus. Though this process is painful at times, we have hope, through Him, in our journey!

Your Child Can Handle This!!!

2009-04-13T07:35:00.004-05:00

When E was diagnosed, I was faced with the question that plagues every parent with a sick child. Why her? Why did my sweet child, who has done nothing to deserve this hardship, have to face a diagnosis like this? She was not even old enough to really understand what is happening to her. I looked at her soft features, skin to young for wrinkles but starting to freckle, hands not much larger than the palm of my hand, eyes so innocent; shielded from the realities of this world, and lips that prayed about how good our world is. I wondered how she was going to face the road ahead of her.

In my search for consolation and encouragement for our journey ahead, I found a quote from a man who was blind and labeled as handicapped. Challenged by this label, he decided to research the term handicap and this is what he had to say, "The dictionary says a handicap is an added burden given to a superior contender to equalize the contest." (I have read this quote on more than one website, but I have not found the original source.)

This is not about an arrogance to think that E is superior to other children, just that God allowed her to face these challenges because she can handle it. No, it is not fair, but nowhere in the Bible does God tell us that our world will be just. In fact, Jesus told his disciples, "In this world you will have trouble. But take heart! I have overcome the world." John 16:33

Now, nearly two years into our journey, E's nose has a few more freckles, her hands fill more of my hand, her eyes are a bit wiser to the world, but her lips still pray about how great our world is and how much she loves her Savior. There are days she struggles with why she is different, why she can't eat some foods that she would like to, why she has to wear a medication patch and take medications, when most kids do not. Despite her diagnosis, she is surviving, and beyond that, she is thriving.

Best Hospitals

2009-04-13T06:57:00.002-05:00

I have just started receiving Parents magazine and in the February 2009 issue, there was a section discussing the best hospitals in America. Keep in mind that this list was compiled from a 250 question survey in which only 75 hospitals replied. Even so, I thought it was interesting and some good information.

The Ten Overall Best Children's Hospitals

1. The Children's Hospital of Philadelphia
2. Children's Hospital Boston
3. Children's Hospital of Wisconsin, Milwaukee
4. Cincinnati Children's Hospital Medical Center
5. St. Louis Children's Hospital
6. Nationwide Children's Hospital, Columbus, Ohio
7. Texas Children's Hospital, Houston
8. Children's Healthcare of Atlanta
9. Rainbow Babies & Children's Hospital, Cleveland
10. The Children's Hospital, Denver

Best Cancer Care

1. St. Jude Children's Research Hospital, Memphis, Tennessee
2. The Children's Hospital of Philadelphia
3. Children's Hospital Boston
4. Children's Hospital Los Angeles
5. Children's Hospital & Regional Medical Center, Seattle

Best Emergency Care

1. The Children's Hospital of Philadelphia
2. Children's Hospital of Wisconsin, Milwaukee
3. Nationwide Children's Hospital, Columbus, Ohio
4. St. Louis Children's Hospital
5. University of Iowa Children's Hospital, Iowa City

Best Heart Care

1. Children's Hospital Boston
2. The Children's Hospital of Philadelphia
3. Nationwide Children's Hospital, Columbus, Ohio
4. Morgan Stanley Children's Hospital, New York City
5. Children's Healthcare of Atlanta

Best Neonatal Care

1. The Children's Hospital of Philadelphia
2. Rainbow Babies & Children's Hospital, Cleveland
3. St. Louis Children's Hospital
4. Riley Hospital for Children, Indianapolis
5. Children's Hospital of Wisconsin, Milwaukee

Best Orthopedic Care

1. Children's Hospital Boston
2. The Children's Hospital of Philadelphia
3. St. Louis Children's Hospital
4. Children's Medical Center in Dallas/Texas Scottish Rite Hospital for Children
5. Children's Healthcare of Atlanta

Best Pulmonary Care

1. The Children's Hospital of Philadelphia
2. The Children's Hospital, Denver
3. Children's Hospital of Boston
4. St. Louis Children's Hospital
5. Riley Hospital for Children, Indianapolis

Sticking up for your child

2009-04-13T06:47:00.002-05:00

Whether or not you are a fan of the show Grey's Anatomy, I was particularly touched by a scene in which a father stands up for his daughter who is in surgery. The family had called back to the OR several times to check on her status and the Chief of Surgery had come to the waiting room to tell them to stop calling.

Concerned Father: "I'm sorry. I know we have been underfoot sometimes. But we have been to a lot of hospitals and hospitals are not easy places to get information. In fact, a lot of times its impossible to even get a doctor to talk to you, or get the doctors to talk to each other. And I don't know if its neglect or their egos getting in the way and I don't care. We are just trying to take care of our little girl. She is ten. She is scared. And, she is sick. We're doing whatever we can."

Chief of Surgery: "Don't ever stop taking care of her like that."

You cannot be afraid to RESPECTFULLY hold medical staff accountable to providing the best care possible for your child. Part of that care is effective communication with you, the child's parent. Don't let the medical staff brush over you the parent. Keep asking questions until someone gives you answers, and don't feel like you have to apologize in doing it. No one loves your child like you do!

Financial Help for Medications

2009-03-28T08:24:00.011-05:00

Medications can get expensive, even if you have prescription insurance! Our copays and deductibles continue to increase each year. Take heart, there are ways to save on your child's medications.

1. Call multiple pharmacies for the prices of medications and to see if they carry name-brand or generics. In most cases, but not all, generic medications are equal in efficacy as their name-brand counterparts. When a pharmaceutical company creates and distributes a new medication it is held under a patent for a set number of years so that the company can exclusively sell that medication in order to recoup their cost for development of that medication. After that patent runs out, the generic form can be provided from other distributors. Your doctor will tell you if he/she specifically recommends name-brand.

It is important to know if your pharmacy carries the generic or has it on hand because often the name-brand medication will have a higher cost and copay.

2. Find out if the medications your child takes are on your insurance's preferred list. Often there are "families" of medications and your insurance will pay more for one member of that "family." Talk with your doctor about this if you need to try the more cost effective medication.

3. Ask for samples. Pharmacuetical companies have representatives that visit doctors to educate them and the nursing staff about new medications and provide samples. They want you to use their product. So, especially if it is a new medication, ask if there are samples to try. If your child does not tolerate the new medication or if you are not getting the desired effects, then you are not out anything. Sometimes your child may be one of the few of the doctor's clients that is taking that medication, so ask if there are samples each time you have a doctor's visit.

4. Utilize the nurses at the doctor's office. They will often know about programs that pharmaceutical companies have to get coupons, or even reduced cost or free medications. They can contact pharmaceutical reps and ask them to call on the office sooner to bring more samples or vouchers. I did this for many patients when I worked in clinics.

5. Use coupons from the paper. Often there will be coupons for transferring prescriptions from one pharmacy to another. They want to make money off of you, so often they will lose some to try to capture your business. Many times you can get $10-$25 gift cards for transferring your prescription to a new pharmacy. Take advantage of this. It takes a little effort, but if your are getting your child's medications for free or even making money off the deal, good for you!

6. Ask your pharmacy about any programs that they may offer. Some pharmacies, like Meijer, for instance provide some antibiotics and even prenatal vitamins (not that your child should need these - but maybe you do) for free. Generic antibiotics are so incredibly cheap that they are willing to lose a few dollars in order to capture your business for the prescriptions that will make them a profit.

Wal-Mart, County Market, and others now offer some medications $4. That is, most likely, less than your copay would be at another pharmacy. Check around and find the best deal!

7. Find out if your insurance has a mail order or 90 day supply discount. With our insurance, we can get a 90 day supply for the cost of a 60 day supply. That is one month free. Some mail-order programs provide a 90 day supply for the cost of a 30 day supply. That is two months free!

What ways have you found to save on your child's medications????

Getting Educated About Medications

2009-03-28T07:42:00.003-05:00

When your child is placed on a new medication, get educated about it!

1. Read the patient information that comes with the medication when you pick it up from the pharmacy.

2. Ask questions! Utilize the doctors, nurses, and pharmacist. Your pharmacist has gone through years of study to have the knowledge to understand how a medication works, its components and how to educate patients about medications. You are paying for this knowledge when you pay for the medications, so don't be afraid to ask.

3. Look online. Be careful to stay clear of forums that are written by non-medically educated people. There will always be someone who has a worst-case scenerio to share. Don't worry yourself with these stories. Focus on the websites from hospitals, pharmaceutical companies, and medical journals/studies.

4. Note the side effects of medications. Be aware of these, but don't automatically assume any change in your child's demeanor or attitude is automatically an effect of the medication. Give medications a chance to work and give your child an opportunity to adjust to a new medication before you judge it.

5. Know the difference between a side effect and a allergic reaction. While both need to be reported to your child's physician, they are different and will be handled differently.

"A side effect is usually regarded as an undesirable secondary effect which occurs in addition to the desired therapeutic effect of a drug or medication." see here. A side effect is something like nausea, vomiting, fatigue, decreased appetite, flushing (reddening of face). You may have to weigh the pros and cons of the side effects and medication efficacy. If a medication is really working for your child, he/she may continue a medication despite mild side effects.

An allergic reaction is different. Medication allergies may be mild or serious. The issue with drug allergies is that repeated exposure can increase the intensity of the reaction. Serious physical reactions to a medications include hives, difficulty breathing, swelling or the airway or face/body, loss of consciousness. If your child experiences any of these symptoms, seek medical help immediately!

6. Understand drug interactions if your child is on more than one medication and/or supplement. It is essential that doctors and pharmacists are aware of any and every medication and supplement (over the counter/non-prescription) that your child is taking. Medications that may be fine individually can present harmful effects when combined.

Medications

2009-03-28T07:11:00.003-05:00

With the revelation that a baby is on its way, our mother bear instinct to protect that growing bundle of joy kicks in. We decrease our caffeine intake, stop taking anything but tylenol no matter how bad we hurt, we watch the foods we eat and stay away from environmental hazards. We don't want anything to contaminate our precious little one.

As infants we yearn to provide only the best and healthiest options for our babies. Even as they grow it is our job to monitor what they put into their mouths, the foods they eat and the liquids they drink. We want the best for our children.

When your child is diagnosed with a medical condition, most likely he or she will be started on medication(s). For me this was a struggle. I am not against western medicine or medications on the whole. It was the long term part of her treatment that concerned me. No medication is without risk or a possible side effect. I hated the thought of putting those chemical compounds into her system on a daily basis. Some of our newest medications have not had long term studies on the effects in children.

It was scary to me when the doctor told me "E" was going to be on medication for the rest of her life. Beyond that, I hated the thought of her being on long term daily antibiotic therapy. Having a Bachelors Degree in Nursing, I have studied medications and side effects. I have seen the results of antibiotic resistant organisms. I knew that the medications that we were starting to give E were necessary and meant for her protection and health, but it was a struggle nonetheless.

It ultimately comes down to you as the parent to approve and evaluate how a medication is impacting your child. For E, we did not have a choice about her being on an antibiotic. It was that or face repeated kidney infections and severe kidney damage. We did, though, take initiative to request a change in antibiotic treatment as we noted that her spasms were increased on the first antibiotic she utilized. We also pushed to get her anti-colinergic (medication for bladder spasms) changed when the side effects were too intense.

Partner with the doctors in the decision making process regarding medications. The doctors depend on you to monitor how your child responds to his/her medications. You are with your child everyday. You can see how your child is impacted. Embrace this power. Get educated on any medication your child starts and do not hesitate to question the medication choices that are made for your child. Follow that momma bear instinct to protect. Weigh the pros and cons. Doctors have been educated on what medications are best to treat conditions, but you are the expert on treating your child.

Scripture that has encouraged me

2009-03-28T06:55:00.004-05:00

Philippians 2:13-15
"For it is God who works in you to will and to act according to his good purpose. Do everything without complaining and arguing so that you may become blameless and pure, children of God without fault in a crooked and depraved generation, in which you shine like stars in the universe."

2 Corinthians 12:9
"But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness."

Isaiah 55:9
"For as the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts."

Romans 5:3-5
"And not only this, but we also exult in our tribulations, knowing that tribulation brings about perseverence and perseverence, proven character; and proven character, hope; and hope does not disappoint, because the love of God has been poured out within our heat through the Holy Spirit who was given to us."

2 Corinthians 4: 16-18
"I do believe that we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen cut to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal."

Psalm 34:8
"O taste and see that the LORD is good; How blessed is the man who takes refuge in Him!"

Job 2:10
"He replied, "You are talking like a foolish woman. Shall we accept good from God and not trouble?"

Matthew 5:4
"Blessed are those who mourn, for they will be comforted."

Matthew 11:25-26
"At that time Jesus said, "I praise you, Father, Lord of heaven and earth, because you have hidden these things from the wise and learned, and revealed them to little children. Yes, Father, for this was your good pleasure."

Matthew 11:28
"Come to me all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart and you will find rest for your souls. For my yoke is easy and my burden is light."

Romans 15:13
"May the God of hope fill you will all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit."

I Corinthians 2:9
"No eye has seen, no ear has heard, no mind has conceived what God has prepared for those who love him."

What is Vesicoureteral Reflux (VUR) ?

2009-03-14T12:49:00.004-05:00

Summarized from Wikipedia:

Vesicoureteral reflux (VUR) is an abnormal movement of urine from the bladder into ureters or kidneys. Urine normally travels from the kidneys via the ureters to the bladder. In vesicoureteral reflux the urine flows back up the ureters and into the kidneys.

Grades of Reflux

* Grade I – reflux into non-dilated ureter
* Grade II – reflux into the renal pelvis and calyces without dilatation
* Grade III – mild/moderate dilatation of the ureter, renal pelvis and calyces with minimal blunting of the fornices
* Grade IV – dilation of the renal pelvis and calyces with moderate ureteral tortuosity
* Grade V – gross dilatation of the ureter, pelvis and calyces; ureteral tortuosity; loss of papillary impressions

Statistics

It has been estimated that VUR is present in more than 10% of the population.

Younger children are more prone to VUR because of the relative shortness of the ureters. This susceptibility decreases with age as the length of the ureters increases as the children grow. In children under the age of 1 year with a urinary tract infection, 70% will have VUR. This number decreases to 15% by the age of 12.

Although VUR is more common in males before birth, in later life there is a definite female preponderance with 85% of cases being female.

The younger the age of the patient and the lower the grade at presentation the higher the chance of spontaneous resolution. Most (approx. 85%) of grade I & II cases of VUR will resolve spontaneously. Approximately 50% of grade III cases and a lower percentage of higher grades will also resolve spontaneously.

Treatment

Medical treatment (meaning daily antibiotics to keep the urine sterile) is the preferred mode of management but surgical interventions may be necessary. Medical management is recommended in children with Grade I-III VUR as most cases will resolve spontaneously. A trial of medical treatment is indicated in patients with Grade IV VUR especially in younger patients or those with disease on only one side. Of the patients with Grade V VUR only infants are trialed on a medical approach before surgery is indicated, in older patients surgery is the only option.

There are three types of surgical procedure available for the treatment of VUR: injectable implants (DEFLUX) known as the sting procedure, laparoscopic; and open surgical procedure ureteral reimplantation.

A surgical approach is necessary in cases where a breakthrough infection results despite daily antibiotics, or there is non-compliance with the prophylaxis. Similarly if the VUR is severe (Grade IV & V), there are pyelonephritic changes or congenital abnormalities. Other reasons necessitating surgical intervention are failure of renal growth, formation of new scars, renal deterioration and VUR in girls approaching puberty.

E had grade four on one side and grade three on the other. She had breakthrough infections on two different antibiotics and her spastic bladder made her case more complicated. The surgeon at Mayo Clinic felt open surgery was the best course of treatment for E.

The Diagnosis

2009-03-14T12:25:00.003-05:00

When your child is diagnosed with any medical condition, it is a surreal. You may be expecting a certain diagnosis, or you may be caught entirely off guard. E had been sick for awhile, so we were expecting to hear that she had VUR. We were not expecting to hear that our three year olds bladder looked like that of a sixty year old.

E had undergone anesthesia throughout part of her testing the day she was diagnosed, so we had been separated from her in the surgical waiting room. When she was done, the staff called us into a cold tiny room with just a few chairs and a small table with a box of tissues.

I just stared at the doctor and fought back tears as he talked. My mind was spinning. Why isn’t my brain processing what he is saying? Why isn't my mouth speaking forth all of the questions that are flying through my head? Why is he talking about this like it is no big deal? What about…? How did this happen? What is he saying right now? What does this mean for her future? Is this room getting smaller? Is this my fault? Could I have done something to prevent this? When can I see her? The questions came so much quicker than the answers.

I was heart-sick. A doctor had told me that my child, my first born, my only daughter would never be off of medication and would deal with at least her spastic bladder for her entire life. It was more than we had expected, more than we had prepared ourselves for.

It was as if we had received a sentence for E that she would never have a "normal" life. Sure, we kept perspective that her condition wasn't life threatening as long as it was treated. Without treatment, it would be fatal due to kidney damage and failure. But, there was hope for treatment and possibly a cure for one aspect of her diagnosis. Her spastic bladder and damage already done to her bladder wall was more disheartening. What would it mean for her future?

Be prepared that a diagnosis may hit your spouse differently than you. My husband dealt with all of this better than I. I needed to grieve for the loss of E having a typical childhood. I needed to cry over the disappointment and fear. I needed to be angry over the injustice. I had to work through the stages of grief. My husband just looked at it with the perspective that it E was not dying and many people have to take medication for their whole lifetime. It was more concrete to him. Each parent will respond differently.

I even felt guilty for being so upset when we could've been facing a much more traumatic diagnosis. A dear friend encouraged me by saying, "Just because they guy next to you may have a broken leg, it doesn't mean that your paper cut does not hurt." Allow yourself to deal with your child's diagnosis. Give yourself liberty to grieve and then pump yourself up for a battle for your child's health.

Watching my words

2009-02-26T21:51:00.005-06:00

I am a young parent and I have a lot to learn about raising my little ones. I wish I could spare my kids from my mistakes as I am in the continual learning process, but sometimes, I mess up and they suffer for it. I have become more and more aware of the fact that my kids are listening to every word I say. Even when they appear to be distracted, they are listening. "E" is my oldest and is not yet five, so I am really learning with her.

The day we were headed home from the third doctor and second orthopedic surgeon when "E" broke her arm, I made an emotional call to my husband and then my mom. "E" was quietly watching a movie in the back of the van so I candidly talked with my family about how tired I was from our recent trip to Mayo and how sad I was that "E" was having to now face surgery on her arm. I went on to express my frustration that God was allowing all of this to happen to us as tears freely ran down my cheeks. I was so consumed with my own fatigue and grief that I forgot that very nervous and sensitive ears had tuned out the movie and were listening to every word I was saying.

It wasn't until I got off the phone and heard her little voice that I realized what I had done. From the back of the van, she asked, "why are you crying mommy?" I lovingly explained that it makes mommy sad that her arm was hurting and that when she hurts, mommy hurts too. It pacified her for the time, but I couldn't undo what she had witnessed. I made a bad situation for her worse than it had been. It was unintentional, and I wouldn't have ever wanted to make things harder for her, but the damage was done.

My point is, kids can cope with the obstacles that they face if their parents are coping. They mirror so many things that we say and do, why would we think that they would not also mirror our emotions and coping skills? I am often overwhelmed after leaving the doctor's office and my first instinct is to call my hubby and mom to fill them in on what was discussed during the appointment. I have learned that sometimes, it is better to wait until my little one is out of earshot to make those calls. She has enough to worry about without adding worry for her mommy!

E's E-mails

2009-02-20T13:05:00.002-06:00

December 6, 2007

Some of you know what has been going on with our three and a half year old daughter, “E”. For those who we have not had contact for awhile I will briefly fill you in on her. Starting about six months ago, she got really sick and since then has run a fever every 2-3 weeks for about 4 days at a time. About 5 weeks ago, she was pretty sick and was diagnosed with a urinary tract infection (UTI). After speaking with a urologist, he recommended further investigation as UTI's without complications are pretty rare at this age. She had a kidney ultrasound last week which was normal (revealing little to no kidney damage at this point). Today, the urologist put her under anesthesia and did a cystoscopy (put a camera up into her bladder) and after she woke up, a VCUG (test where they put dye into her bladder to check for reflux of fluid from her bladder up into her kidneys). We were very thankful that she was anesthetized for the cystoscopy and bladder catheterization, but the VCUG was a pretty painful procedure for her. The doctor found that she has a spastic bladder which will require twice daily medication, probably for her lifespan. He also found that she has, what he labeled, as severe reflux up both of her ureters (tube from kidneys to bladder). We have to wait on the radiologist to stage the degree of reflux and will meet with the urologist to discuss a treatment plan in four weeks. From the research I have done, if the reflux is stage 4 or 5, it will require surgical intervention to prevent damage to her kidneys. Stage 1-3 will require twice daily antibiotics and periodic testing with the hopes that by puberty, the defects will heal themselves. While we are relieved to know the source of her ongoing fevers, this is not news you want to hear about your little girl. We are so thankful that my mom was assertive in acquiring a urologist consultation and that we have found out so much in about a one week span including the fact that there does not appear to be any kidney damage.

“E” is doing pretty well at this point. We have had a quiet afternoon. She is, though, having a lot of pain upon using the bathroom. I know it sounds odd, but would you please take moment to pray that this pain goes away quickly for her? It is normal after the procedures that she had today, but there is nothing but time that will fix the pain.

Sorry to inundate you with information today, but we would all covet your prayer for healing and wisdom as to what our next step is to be.

January 13, 2008

Thank you for all your prayers and words of encouragement for our "E". She is doing pretty well. We followed up with her specialist in Peoria the first week in January and I was somewhat disheartened by talking with him. Wednesday, we were extremely blessed to see a female pediatric urologist at Childrens Memorial in Chicago. She was fantastic. After looking at the testing from December, she is not as concerned about "E's" bladder dysfunction as the doctor in Peoria. She is letting us stop the medication that the first doctor said she would take for life. This is a good thing as "E" has lost over 4 pounds since starting the medicine and has had some emotional changes that have been concerning. We are really hoping to see her return to normal! Her reflux has been graded at a 4 on a 0-5 scale. From her experience, the doctor is doubtful that the condition will heal itself at "E's" age and grade of reflux. We will continue with medical management for the next 8-10 months, meaning daily antibiotics. She is going to have a test in April on her kidneys to identify the extent of scarring that she may have. In the fall they will repeat the testing that was done in December to assess if her reflux has improved, worsened, or stayed the same. At that point, we will discuss corrective measures or another plan of action. All this depends on her staying healthy in the mean time. If she gets sick on antibiotics, this plan will change and we will probably be looking at surgical correction more quickly.

She has had some difficulty since stopping the bladder medication, including some spasm pain, but this seems to be improving over the last few days. One of the hardest things right now is helping her deal with all of this emotionally. We are hoping that the longer she is off of the bladder medication, the better she will feel. She is, however, having trouble with understanding the medication she has to take, seeing different doctors, fearing more painful tests, and dealing with emotions about the testing she has already had. We don't know how to help her with the last. She cries when she talks about the testing she has had done, and asks why I wasn't with her and why they didn't stop the tests when she told them that it hurt. The really hard part is knowing she will go through all of this again this fall. She doesn't want to be away from me and her anxiety level is difficult to temper. Please pray for wisdom to know how to help her. It is a really helpless feeling to not be able to fix this and assure her that the worst is over.

Thanks for your prayers. We will let you know more when we know.

February 25, 2008

Thank you for continuing to remember "E" in your thoughts and prayers. Some of you have heard about her recent updates, but for those that haven't, we are taking her to Children's Memorial in Chicago for more testing on Wednesday. As I mentioned in January when I last e-mailed this group, her specialist did not feel that her bladder issues were as severe as the first urologist had thought and she told us to stop the medication that was causing "E" so many side effects. We are blessed to say that the side effects went away very quickly after we stopped the medication. Unfortunately, it became more obvious than ever that she has some type of bladder dysfunction. Throughout the day, she collapses to the floor and is literally unable to move until she is able to get control of her bladder. If I move her before she is ready, she loses all bladder control. If she waits for the sensation she is having to back down, then she can get up and make it to the bathroom. At times, she cries because it hurts her. As she is nearing her fourth birthday, accidents are becoming more embarrassing and frustrating for her. I have been in contact with her the nursing staff at Children's about this and the doctor has requested that we undergo testing to measure her bladder pressures. Because they will have to catheterize her for this procedure, they are going to repeat the testing that she had in December to evaluate the reflux that she has from her bladder to her kidneys. She has not had an infection since being on her daily antibiotic which is a huge praise. It will be interesting to see if her reflux is changed. If it is not, my hope is that we can schedule surgery to repair it in the near future. I am not sure if the doctor will agree. The reality is that even if we fix the reflux, it will probably not help her bladder dysfunction. The hope is through this testing, we will diagnose her bladder issue and start a treatment plan for it, which will likely be another medication. We hate that she has to have this testing done, but it is what has to be done at this point. If she comes to mind Wednesday morning, or any time before then, would you pray that she have peace about this and as little discomfort as possible. She is still dealing with the testing from December and she was sedated through part of it. She will have no sedation this time. We have not told her about what is going to happen yet. The hospital recommends waiting until the day before to tell kids of this age. Thank you for your prayers and encouragement! We will let you know more when we do.

February 28, 2008

Thank you to all of you who have been praying for "E". We traveled up to Chicago Tuesday night for her Wednesday morning appointments. She was aware that we were going up for testing and though there were some tears and anxiety about it, we tried to plan some exciting aspects of the trip (special lunch, trip to the field museum, and a train ride home) for her and those distractions seemed to minimize the testing. All in all the morning went about how we expected. There were some really hard moments for her, but as soon as the tests were done, she was back to her normal self. She had the radiologist and x-ray tech laughing by the time we left. I am so very thankful for that. We were really blessed to have worked with two excellent child life specialists that helped provide distraction and information for "E". The entire experience at Children's was much more positive than the experience in December and it seems "E" is coping much better. As for the results of her testing, it confirmed that she is having bladder spasms and that her reflux has not improved. This is really what we expected to find. We are waiting now to hear from her specialist about what the plan will be to help treat her bladder issues. I have no doubt that your prayers for "E" helped her throughout the morning and I am most grateful for them. We appreciate you all and savor your friendships.

May 30, 2008

Thank you to all of you who have been praying for our "E". She was very excited to celebrate her fourth birthday yesterday!

Earlier this week, we traveled to Chicago for her to have a complete spine MRI. They were looking for a spinal cord issue that might be causing her spasms. We met with her urologist the following day and she told us that the MRI didn't seem to show any neurogenic cause for her bladder spasms. It was a relief to hear that, however, the Dr and the colleagues she works with are at somewhat of a loss as to why she has this problem, and really, what to do about it. We have come up with a plan to try over the next few months. First, we are changing the antibiotic that she has been taking since December, as her symptoms have worsened over this time period. Second, we are going to begin the slow process of changing things in her diet to see if there is a link to her diet. We have already taken away most dairy and replaced it with soy. If none of this helps, we are discussing having implants placed at the junction of her ureters (tubes from the kidneys) to her bladder. Because of her reflux, her bladder never completely empties. As her bladder contracts, urine not only flows out, but also back into her kidneys. As her bladder then relaxes, the urine flows back from her kidneys and into her bladder again. The doctor is wondering if this is contributing to the bladder instability that "E" faces. Ideally, she would have the surgery to reimplant her ureters thus resolving her reflux all together, but because her bladder has this spasticity, the doctor doesn't think it is a good option for her. The goal of the implants is to reduce and possibly stop her reflux. The doctor did not seem overly optimistic that this would resolve her issues, but at this point, it is the best that the doctors can come up with.

Where this leaves us... while we are greatly relieved that her spine and spinal cord are fine, we were hoping that we would find something that would be correctable and thus "cure" her. We, of course, are willing to do anything that we can to help her, but the process of trial and error is a frustrating one for "E" as it takes away some of the things she loves to eat. Please continue to pray for healing for her, but if not healing, at least relief for her. We kept a journal for a week and realized that she is having 6-10 spasms a day. It was shocking to realize that this is happening as frequently as it is.

We thank you for your prayers and encouragement. It is our hope and prayer that as "E" faces the challenges and testing that lie ahead of her that it will shape her into a kind and compassionate child. It would be easy for her to be angry and bitter with this, but for now, she takes it day by day.

Thank you all! We love you!

June 21, 2008

After two and a half weeks of "E's" new antibiotic, she got pretty sick with another kidney infection. This was a bit disheartening as her spasms cut in half with the antibiotic switch. She has been placed on yet another medication to treat the current infection, but her doctor wants to try her back on the last antibiotic with a combination of probiotics after she completes this round of treatment. It has been an indicator for us that it is unlikely she will ever come off antibiotics without correcting her reflux. Her doctor is unable to perform the open reimplantation of her ureters because of her spastic bladder and lack of explanation for it. We have decided to schedule her for endoscopic injections of implants in hope that it will decrease her reflux. It is possible, but highly unlikely, that it will resolve her reflux entirely, but it may help to prevent infection and could help her spasms. We may be looking at open surgery within the next few years.

Please continue to pray for wisdom for the doctors and us, as her parents, trying to make the right choices for her care. Also pray that this infection would heal without damage to her kidneys. She has one small area of permanent damage to her left kidney and we hope to prevent any more.

As always, we cherish your prayers and encouragement. What a blessing it is to know that we are not alone in the trials and fears that we face! Thank you for your love.

September 1, 2008

Thank you to all of you who have been praying for "E"! She has had a pretty good summer and we are so thankful for the progress she has made. We have switched her antibiotic to one she tolerates better and she is staying infection free right now. We have had to eliminate fresh tomatoes (one of her favorite foods) from her diet because it became evident that they were making her spasms worse. With these changes, she is down to about 2 spasms a day. This is such a big improvement from before. Last I wrote, the doctor in Chicago was suggesting surgery to place implants at her valves. We held off scheduling her for that appointment because she had such great improvement and has been infection free for the summer. We heard about a specialist near us awhile ago and waited for weeks to get all "E's" reports from the hospitals where she has had testing and for an appointment. We went to see him last week. This new doctor was very encouraging. He feels like the majority of "E's" issue are related to voiding dysfunction. She needs one more test that involves measuring a void followed by a sonogram of her bladder. If this confirms voiding dysfunction, he would like us to try a program that his office runs. It is one of the few programs like this in the US - to imagine it is only 20 miles from our house. It is a series of appointments working with a specially trained physical therapist that helps "E" to retrain her pelvic floor muscles. This will be done using exercises and (amazingly enough) computer games. She will have to learn to use certain muscles to play the computer game. It is very innovative. We are excited to have hope! The doctor in Chicago has been wonderful, but she wasn't able to give us hope for "E's" long term prognosis. This doctor makes no guarantees, but he is hopeful that with this therapy and her medications we might be able to give "E" a more "normal" life. We are probably still looking at implant surgery, but it is not something that we have to do right now. Thank you for loving us, praying for us, and encouraging us through this. We appreciate you all.

September 27, 2008

Thank you for your continued prayer for "E". It is such a blessing to know you care! We got the results of "E's" most recent test this week and it shows that she is able to empty nearly all of her bladder capacity. This is good, but her muscles are not functioning properly as she voids. From the doctor's standpoint, she is a candidate for therapy to retrain her pelvic muscles. We received a letter today, however, that states that this therapy is not covered by our insurance. There is an appeal process but it can take weeks or months. Would you take a moment right now and pray that the appeal would go very quickly and approval would be granted? We will proceed with therapy regardless of whether insurance will pay because it has the potential to help her overcome these spasms. We will do anything to help her, but it would be great to have insurance help us out! One other thing that I would ask you to pray for is that she would be able to participate in the therapy. It takes discipline, coordination and focus that, we are told, not all four year old children can handle. If she does not have a good first session, they will wait for six months before they will try again. Six months is a long time to continue with her spasms and without an effective treatment. We are trying all of the recommendations that the doctors have suggested, but "E's" spasms are beginning to increase in frequency again and we do not know why. We appreciate you all and covet your prayers. You bless us more than you can know.

September 29, 2008

After speaking with the insurance company and "E's" doctor today, we are not going to be able to get insurance to cover her treatment. This is disheartening, but God is faithful and we feel that this is the best thing to do for her at this point, so we are working to get her scheduled. Right now, there are no appointments until at least December, so they are going to have to try to work us in to get started. Would you take a brief moment to pray that we would be able to get her started quickly and that I would be able to arrange childcare for our boys for each appointment time? We so appreciate you for coming along us during this journey.

October 20, 2008

Hello everyone! I wanted to give you all an update on "E". As her symptoms have increased, I scheduled an appointment last week to see the Nurse Practitioner today. This morning, I got a call from preschool that "E" was not feeling well. When I picked her up, she had a 103 fever. It turned out to be a huge blessing that we already had an appointment for this afternoon. She has a urinary tract infection despite her prophylactic antibiotic. We will be working with the doctor over the next few days to once again look at her treatment plan. I have a few prayer requests and praises to share

Praises
- I already had the appointment for today - the day she is sick
- The nurse practitioner that we saw is actually someone that I went to high school with. She spent a long time talking over "E's" case and our options for treatment. I feel like I have an advocate in the office through her.
- The nurse that does the therapy we have wanted to start her on is coming in over her vacation time on Thursday to work with an out of state patient and is willing to see "E" then to at least give her an initial treatment even though we may not get in again until December. If she is not feeling better by then, however, we will not be able to do therapy.

Prayers
- Her treatment antibiotic would work well and quickly
- Wisdom to know for sure which surgical option to go with - at this point we are leaning toward reimplantation for a variety of reasons
- Good communication with her physician and wisdom to know if he is the right surgeon to use as he rarely does this surgery - most cases are easily rectified by implants only

Thank you all for your prayers for our little "E". We cherish you all.

November 2, 2008

When I wrote two weeks ago, "E" had developed a kidney infection despite her daily antibiotic. We started her on a therapeutic dose of a different antibiotic and she improved quickly. We found out from her culture that she had developed an infection that had become resistant to her daily antibiotic. She completed her course of antibiotic on Thursday and by yesterday she was sick again. She has had a lot more pain with this infection and is urinating visible blood. She is now on yet another antibiotic and has had four doses but her fever is continuing to climb. We are in desperate need of wisdom right now. The pediatric urologist that we have been seeing here refused to prescribe her an antibiotic for this current infection and we were told to call her pediatrician to deal with this. The apologetic physician on call stated that there are "political reasons" why this doctor would not treat her infection. We are baffled by this situation and are at a loss as to what to do. As "E" is sick again, we need to get her treated and she needs to have surgery, hopefully sooner than later. At this point we are not comfortable continuing to see a doctor that refuses to treat our 4 year old for "political reasons." We need to make a decision as to where to take her. We are debating between returning to Chicago and taking her to Mayo Clinic. Would you please take a moment to pray for healing for our little "E" and for a direct answer as to where we need to go from here?

Thank you all. We are blessed by your intercession.

November 3, 2008

Thank you to so many of you who have been praying today! We got the results of her culture and though it does not make sense to me, her urine did not grow any bacteria. The thought is that she has cystitis which is an inflammation/irritation of her bladder and urethra, but her kidneys should be fine at this point. She shouldn't have a fever with this, so it is possible that she has a virus of some kind right now causing the fever. This is good news.

More good news is that we have an appointment at Mayo Clinic in Minnesota on December 3rd to meet with a surgeon and do a few repeat tests and then she will have reimplantation surgery the next day. We are very relieved at this! We at least have a plan ~ so we can praise God for that!

Please don't stop praying for "E". We have to keep her healthy between now and then. She has to have her urine checked for infection a week before surgery and if she is sick, she cannot have the surgery at that time. Also, this is only going to treat half of her issues. We have hope that the surgery will in turn take stress off her bladder and thus decreases her spasms, but there is no guarantee of that. We are going to stop her therapy at this point and get through surgery to see what happens. Then we will start anew looking for something to help her bladder spasms.

Thank you all for coming alongside us!

November 13, 2008

Thank you all for your ongoing prayers for "E". You should see her face when we tell her that people all over our country are praying for her. She, unfortunately, has developed yet another infection despite our best efforts to keep her well. We are awaiting her culture results to know how to treat her. Her temperature reached 103 this morning, but went down with advil. It is now back to 101. This is obviously not a good situation, but we are thankful that it is happening now when we can treat it before her surgery is scheduled. We are fervently praying that God will heal this infection and prevent any additional infections so we can have surgery as scheduled. Thank you all for continuing to pray!

December 1, 2008

We are in a hotel in Cedar Rapids, Iowa tonight and will continue our journey to Mayo Clinic tomorrow. Thank you to all of you who have been faithfully praying for our "E". Tomorrow she will have a kidney sonogram and an x-ray test to reassess her reflux. This is a test that requires a catheter to be placed. This is always very traumatic for her. Would you take a moment to pray for her as she faces this test? She is pretty scared about what this week holds for her. She doesn't know details, just that we are going to Mayo to fix her reflux.

On Wednesday, we will consult with the pediatric urologist and she is tentatively scheduled for surgery to correct her reflux on Thursday.

Would you also take a moment to pray for our boys as we will be away from them until we return after "E's" discharge from the hospital? It has been an intense couple of weeks and though our boys are so young, they still can sense something is going on.

We thank you for your prayers and encouragement. We are blessed by each one of you.

December 2, 2008

We are settled into our hotel room now. Today's testing went well. "E" was so brave and only cried a bit. The anticipation was almost worse than the procedure. She is doing great now that we are done with testing. We are eager to hear what the doctor says tomorrow morning and we will report back when we know for sure what the plan is. Thank you all for your prayers. We have so appreciated your e-mails of encouragement. Please forgive me for not responding to each individually at this time.

December 3, 2008

We met with "E's" doctor today. This is an amazing place! We will not be able to do surgery tomorrow as we had hoped because she had an infection just three weeks ago and because no one has yet gotten control of her bladder spasms. This is disappointing in one regard because of course we are just ready to get this fixed. On the other hand, if we do surgery with the state her bladder is in now, we were told that the sutures will not hold and the surgery will not be successful. We are now planning surgery for January 9th. In the mean time we will be trying a new medication to help her spasms. The doctors here have told us that "E" should one day have a pretty "normal" life. It may just take us a little while to get there. Thank you for your prayers.

We will be traveling back home today. Would you please take a moment to pray for safe travel for us and my mom, who drove separately. Also that "E" stays infection free until January 9th.

Thank you all!

December 10, 2008

I didn't expect to be e-mailing you all again so soon, but on Monday night "E" fell and broke her right arm. She was splinted at prompt care that night and we saw the orthopedist today. He sent us to a pediatric orthopedist who has scheduled "E" for surgery tomorrow. She broke her ulna which then dislocated her radius because of the angle of the break. She has to have her radius put back in place and her ulna pinned to prevent it from re-dislocating her radius. She will be in a split cast tomorrow after surgery in order to allow swelling. Next week, we will have to go and have her cast stabilized. Because she will have a cast for 6 or more weeks, we have to reschedule her surgery at Mayo clinic. She cannot have anesthesia while her cast is on because the body tends to swell and if her arm swells with a cast on we are in more trouble. "E" is also running a fever today. She started coughing yesterday so we are hopeful that it is just a virus, but we have taken her urine to the lab to be tested. They plan to do surgery as long as her temp stays below 101. We are a bit overwhelmed right now in dealing with this on top of the stomach flu this week. Would you take a moment to pray for our family right now and for "E's" surgery tomorrow?

December 11, 2008

Thank you for your prayers for "E" today! Her surgery was successful and her arm is stable in her split cast. She had two issues today. The first is pain. She is responding well to pain medication now and is peacefully asleep. The second is that she had a pretty bad reaction to the tape they used on her face during surgery. She had massive welts and we were told that the skin was nearly blistered by the time they got the tape off of her. At this point the redness has mostly faded and it doesn't seem to bother her. This was a good thing to learn today as this is a shorter surgery than what she will have done at Mayo in February. Who knows what the tape would do to her if on longer. We can praise God for revealing that to us today so they can use something different the next go around!

Thank you for your prayers and encouragement!

February 2, 2009

I wanted to send a short e-mail to let you know that "E's" urine culture came back clear today, so we are set for her surgery this Friday. Jason is in Lisle, IL until Wednesday, when we will meet him at my parent's house to drop off our boys. Jason, "E", and I will then proceed back up to Mayo on Thursday. We will not know the time of her surgery until Thursday night when we get there. I will e-mail the time then.

Would you take a minute to pray:
1. That we would all stay healthy through then.
2. For safe travel
3. For our boys as we will be away from them for several days
4. For anxiety - "E's" and ours. Jason and I have been hit with the magnitude of this again and it is scary for us to watch her go through this.

Thank you all!!!

February 5, 2009

We had a very uneventful drive up to Mayo Clinic today. Thanks for your prayers for safe travel. Our boys are doing well at my parents and "E" is doing okay. She is really nervous but excited too. She understands that this surgery is going to help her and she is eager for that.
Her report time to the hospital tomorrow is 10:00 am. Surgery time was not given, but it will probably be about two hours later. We would've loved to be able to go in earlier in the morning, but this will be okay. She will just have a long morning without being able to eat.
Thanks for continuing to pray! We will update when there is something to tell.

Thank you all!

February 6, 2009

Thank you for your prayers. "E" had a rough night as she has developed croup. We were concerned that they would not proceed with surgery, but the anesthesiologist wasn't too concerned. She went to sleep at about 11:55. They let me go with her to the OR and stay with her until she was asleep. She was so brave. We will update when we can.

February 6, 2009

"E" is done with surgery. The first thing the doctor said was that it went well and that it absolutely needed to be done. He then proceeded to tell us that her bladder is in rough shape. The muscle is very thick showing us that it has been quite dysfunctional. This finding decreases the surgery's effectiveness from 95% to 80%. We still think that is pretty good. After seeing her bladder he confirmed what we suspected in that she will be on medication indefinately for her bladder dysfunction. We will reevaluate her reflux in three months and if it appears to be resolved, she will be able to discontinue her daily antibiotic.

She has a catheter as well as an external stent from one of her kidneys. As long as she produces good urine from both, the stent should come out tomorrow. The catheter will hopefully come out Sunday and he is hopeful that she will be able to come back to the hotel on Sunday. If she does well, then we may be able to head home on Monday.

She is not back to her room yet, so we are anxious to see her. All in all, today is a success. Thank you for praying. Please continue to pray for her pain, kidney function, and bladder function. We are so blessed by each of you encouraging us! Thank you for walking this journey with us.

February 7, 2009

Thank you for your continued prayers. It has been a long day after a night with not a whole lot of sleep. "E's" pain was pretty intense through the night and she ran a fever of 100.7 so we had to keep rolling her which caused her to cough (this helps reduce fever). Coughing is really painful for her and movement on the whole hurts her. When we have her settled, she is able to be pain free on the medications that they are giving her, but we cannot just let her lay in bed.

She walked the length of the hallway a few times today which was very hard, but she understands that she has to do it to be able to go home. She cannot stand straight up because of the pain she has, but she walks, none the less, to the playroom where we do a project and then walk back to the room.

Her kidney stent was removed this morning. It was painful when it was removed, but now that area feels better. The doctor hopes to remove her bladder catheter tomorrow. That will help "E" a lot as it bothers her. It is possible that we will be able to take her to the hotel tomorrow, but at this point today, I would be surprised if they let her go. Maybe she will have a great day tomorrow and make a lot of progress, but since she is still running a fever and having this much pain, my guess is that she will be discharged Monday.

I do have a few things to pray for:
1. "E's" fever will be gone
2. Her pain will greatly decrease and endurance increase
3. Restful sleep tonight for all of us
4. Our Little "L" has tonsillitis now and has been running a fever since yesterday. My parents got him started on an antibiotic today and he looked pretty good when we talked with him via video today (isn't technology amazing!), but it is hard to be away from him and him to be away from Mom and Dad when he is sick.

February 8, 2009

"E" had a difficult night last night with her fever reaching 103, but this morning has been a good morning. "E's" pain is being really well controlled by the medications they are giving her. The resident was able to remove her catheter this morning. This has really helped "E's" comfort level. The only downside is that she has been needing to go to the bathroom, quite literally, every 20 minutes. We are so pleased that her kidneys and bladder are working so well, but it is a bit physically taxing right now. We just got the doctor to agree to decrease her IV fluids a bit.

Because of her fever and oxygen level falling last night, we bought ourselves another night at the hospital, but if we can keep her fever down, hopefully we will be discharged tomorrow.

Things to pray for
1. "E's" fever
2. Continued pain control
3. "L" is still running a fever as well, but he is drinking well and responding to ibuprofen. My parents are not getting much sleep right now. They have been such a blessing to us!
4. Good sleep for all tonight!!

February 9, 2009

"E" is continuing to run a fever. Right now it is 101. This is with tylenol being given every six hours around the clock. So, we have to stay another night. They did a chest x-ray, bladder scan, and blood work this morning trying to find a cause for her fever. Her cough is improving and she is using her incentive spirometer to open her lungs regularly. We are pretty disappointed that we will be here another night, but we don't want to leave if "E" is "sick."

"E" is urinating good volume, but she has been passing several clots of blood which is really painful for her. She is having difficulty with bladder control and is experiencing bladder spasms today. She is still dealing with urgency and voiding frequently which is a bit exhausting for her (and us).

On a positive note, because there is a positive side, her abdomen is healing really well. Her incision looks great and she is able to stand taller each time we walk. She was even able to lay her bed flat last night for a few minutes and extend her legs without much pain.

Would you take a moment to pray for:
1. wisdom for the doctors and us as we try to find the source of this fever.
2. healing
3. that "E's" bladder spasms would stop
4. "L" still has a fever with his tonsillitis. He is not sleeping well for my parents.

Thank you for all your encouraging e-mails and mostly for your prayers. Please do let me know if you don't want to receive any more e-mails. I don't want to fill your inbox. I know you are all very busy people. Thanks for encouraging us!

February 9, 2009

"E's" fever reached 102.7 this afternoon and we really saw some changes in her for the negative at that point, she was confused and restless and was not herself. Her chest x-ray had a few minor abnormalities but did not show pneumonia. Her blood work showed that her blood count was low but otherwise normal. Her white cells were normal which is odd with a fever.

The surgeon is at a loss as to what to do, so they have consulted pediatrics. The peds doctor came in tonight and assessed "E". She saw her after her fever broke and she was feeling so much better. We sent blood cultures, a urine culture, a test for influenza and a test for RSV. There is a chance that though her cough is really improving, she may be running a fever simply from croup.

She is still having urgency and pain with urination and still passing blood clots, but her output continues to be good.

She is sleeping peacefully now and will hopefully have a good night.

We are so hopeful to start home tomorrow, but I am not sure that they will let us go until the culture results are back and "E" goes without a fever.

Thank you for continuing to pray!

February 10, 2009

Your faithful prayers and our great God having been working in "E". She is fever free and we are coming home. After our afternoon yesterday, I didn't think that we were close to discharge, but she is doing fantastic. I can only attribute such a fast turn around to the hundreds of people that have surrounded us and "E" with ongoing prayer! Thank you for being so faithful. I have no doubt that God did a great work of healing in her body.

She is still having urgency, spasms, pain on urination and passing blood clots, but the urologist has come to the conclusion that her bladder is in such a bad state, that this healing process is going to take significantly longer for "E". We don't have all of her tests back yet, but if something would show up, we should be able to treat it from home at this point. All of the tests that are back look really good.

"E" will have some repeat testing in three months to confirm that the reflux is resolved. If it is, then we will continue to treat her dysfunctional bladder, but we will be able to stop her reflux treatment.

Jason and I cannot begin to express our gratitude and the love we have felt over the last few days. We are blessed beyond description to have each of you in our lives. Thank you for loving us and loving "E".

Finding Balance

2009-02-15T14:08:00.002-06:00

I am a woman who likes to think that I can do it all. I don't like to accept help from anyone or admit that my plate is too full. I am continuing to learn that it is okay to not do it all. The month of December '08 was especially taxing for our family. I was completely overwhelmed by all that was going on. "E" had been sick, we made a trip to Mayo Clinic, and then she broke her arm which required surgery. We had extra doctor appointments because of her arm, my sister in law was getting married and then there was Christmas and all the busyness that it brings about. I had to let things go. I didn't have a choice.

To simplify, I stopped doing my weekly Walgreens and CVS runs. I am a big time bargain shopper and love the reward programs that these two stores offer. I had enough toothbrushes, toothpaste, bandaids, shampoo & conditioner, etc on hand that I could miss a few months and still have plenty in stock. I am just getting to the point that I am considering adding this into our schedule.

I spent a morning every now and then to make freezer meals so on our really busy days I was not adding dinner prep to our choas. It is such a blessing to grab a dish from the freezer and have a home cooked meal a few hours later with no work! We also ate out more often during our most crazy times. That is not my first choice as the idea of three kids under 5 at a restaurant is not always a pleasant prospect, but sometimes it is worth it just to avoid the post meal kitchen clean up at home. It is only for a season, right?

House cleaning is one of my least favorite tasks, but I cannot stand a dirty house. We have a significant area of hard flooring in our house and I was raised to scrub on my hands and knees. Through our time of added stress, I bought a steam mop and cut the cleaning time in over half. The floors may have more streaks, but they are clean.

I extended my cleaning schedule to every three weeks rather than every two weeks. We can live in a less than spotless home for awhile. In reality, with my little ones, my house is never spotless anyway!

The point is, when your life is most choatic, it is okay to let go. You will get through the choas and on the other side, you will catch up. Cut your losses for awhile if you have to. When your child is sick, just do what has to be done and don't be afraid to accept help if it is offered!

What can you do to reduce your stress through flare ups in your family?

Flexible Spending Accounts

2009-02-15T13:27:00.003-06:00

As out of pocket medical expenses were adding up, we began looking for any kind of financial benefit that we could find. One of the programs that we have opted to take advantage of is the medical flexible spending account (FSA). Wikipedia has a fantastic description of a FSA.

Basically, a FSA is a plan that is available through your employer. It gives you the option to withhold a certain amount from your paycheck to be deposited into an account that can be used tax free for non-reimbursed medical expenses. It is a small benefit, but you can at least save the taxes that you would have paid on that amount of money.

There is a catch. Any amount of money that remains in your account at the end of the benefit period will go directly to the government. There is a grace period of 2.5 months, I believe, because sometimes procedures that are performed in one benefit period may not be billed until early in the next benefit period. You cannot pay for a procedure done in the last benefit period with funds from the current benefit period even if you recieve the bill in the current period.

The key is to do a little homework and withhold only what you know that you will spend. One idea is to withhold the amount of your out of pocket maximum for your "sick" child. You will most likely spend more than that, especially if you have more than one child, but you don't want to lose money in an attempt to save some!

Things that are covered by medical flex accounts include any portion of a medical bill that is not covered by insurance, prescription medications, over the counter medications, or health related purchases. Pharmacies such as Walgreens designate on your receipt items that are eligible.

The ease of obtaining reimbursement varies with the plan provider. Some plans provide a debit card for use in medical FSA. Ours requires us to send in receipts and its particularly difficult to get reimbursement. I am required to send in a doctor's bill and an explanation of benefits (EOB) so that the service has a name and a diagnosis. Then I have to fill out a form that explains it all again. It has been difficult to get reimbursement for prescriptions with our plan. I will send in a bunch of receipts and the same supporting information each time. Sometimes I get reimbursed and sometimes I don't. It is not really worth arguing to me because next month I have more bills to send in and we always spend more than we have withheld. My suggestion is that if you are not doing this already, ask your co-workers what their experience has been. Decide if it is worth the extra work to you.

There is something else to consider. If your medical expenses as described here exceed 7.5% of your adjusted gross income, you can claim your expenses on your taxes. Anything that you have withheld for your FSA cannot be claimed. You may want to talk to a tax professional to see which option would most benefit you.

Disclaimer: I am not an expert on any of this! Please consult a professional and your employer before making your decision on a FSA. I simply wanted to share a resource that we have found valuable.

Tips for Doctor Appointments

2009-02-15T10:36:00.002-06:00

Having been to many doctor appointments, for myself with three pregnancies now, and for "E", I am learning a few things that have helped make the process a bit less painful.

1. If there is a lot to discuss, or this is a new doctor, take someone with you. It helps to have another set of ears listening if you are going to be receiving a lot of new information. If nothing else, sometimes your discussion with the doctor may be lengthy and your little one may need to be distracted by someone else so that you and the doctor can focus on the issues at hand.

2. Make a list of questions or concerns before you go to the appointment. It is often a headache to get in contact with a physician, or have a message accurately relayed by office staff in the event that you have a question or concern. If you have the doctor in the room with you, take advantage of that opportunity. No question is stupid. If you don't understand, or if you feel like the doctor is not understanding what you are conveying, be persistent. Don't leave with more questions that you came in with!

3. Bring a list of current medications, doses, and frequencies. It is the nurses job to review this list every time you see the physician. It is easier for them and you if you can hand them an accurate list!

4. Bring your health history, flowsheets, and test results to each appointment. If a question about progress comes up, you have all your evidence in hand to review the treatment plan.

5. Get a sitter for your other kids. It is very difficult to make the most of your appointment time with the doctor if you are distracted by managing the circus act that your children are performing, keeping them from crawling on the disgusting floor, or preventing one from tackling the other. You will be much more relaxed as will your physician!

6. As always, dress for success. Take yourself seriously. Show that you have it together and are working for your child's best interest. The more value you place on your child and self, the more seriously you will be treated.

You are paying good money for the time you get with the doctor. Spend it well. Don't settle for less than what you expect from each appointment. You are the advocate!

What's In This For Me

2009-02-15T10:25:00.003-06:00

I am a fixer. I can fix most things. I get this from my father, who is heavily mocked in my family for being a major "jerry-rigger." The reality is, though, he is able to fix most anything. I inherited this ability to see a solution to a problem. It is something that has extended from the physical into the relational and emotional too. I say this humbly because I have been in the process of learning that I am not THE FIXER.

One day in my mom's group Bible study I was talking about my struggle with being a fixer and being unable to fix "E". My small group leader wisely pointed out that perhaps that is something that God was trying to teach me. Barbara Rainey of Family Life was quoted by a dear friend of mine as saying, "Some of us, and our kids, who are used to doing things well (overachievers, people-pleasers, successful kids, etc.) need to be reminded of our need for a Savior."

My life, other than dealing with having a "sick" child, is a pretty easy one. I am able to control many things and in general it appears that I have it all. It is easy to think that these things... securities... solutions come from me. The reality is, they come from my Savior. He allows me to fix some things on my own, but I cannot lose sight of the fact that He is the ultimate fixer.

The Right Doctor

2009-02-15T10:23:00.002-06:00

Finding the right doctor is like buying a new pair of jeans. You may have to try on a few pair before you find the right fit!

I'm not sure if this was an original quote to me or not, but it came to me one day and I thought it might encourage you!

Keeping a Health Record for Your Child

2009-02-15T09:22:00.005-06:00

The longer your journey through medicine takes, the more doctors you will see, the more medications will be tried, the more tests will be done. It gets to be a job in itself to manage all of this information. I have found that keeping a Medical History of my own for "E" has been a tremendous resource. I keep a chronological journal of sorts with dates, medication changes and responses to those medications, tests and results, doctor appointments, a summary of each appointment, etc. This information is priceless when it comes to reviewing E's care. When and if you see another physician, they will much appreciate having this history to refer to and it will save you the trouble of explaining all that has happened with your child. In my opinion, your child will receive better care because your doctor will have a complete picture of his or her health history.

Keep copies of any flowsheets that the doctor has you complete. For instance, we have had to fill out flowsheets for urine output for "E". We had to document the fluids she took in and the amounts she urinated, any accidents that she had, and whether she had a spasm, urgency, or was prompted by me to void. As we have changed physicians, having a copy of this prevents us from having to complete a flowsheet for the new physician. I am all about saving time and energy!

The last component of your child's personal health history is getting hard copies of any testing that has been done. "E" has had x-rays, sonograms, bladder testing, etc. Each time you go to a new doctor or facility, they will want to see these tests. It can be a very time consuming task to collect this information. It can sometimes take weeks, so save yourself the headache and ask for a copy of any testing that is done when it is done. In today's era of digital technology, you will end up with a lot of discs, so get a cd case that holds multiple discs and keep it all together.

When to Call Your Insurance Company

2009-02-14T20:34:00.002-06:00

If your premium is paid and you are within the constraints of your policy, your insurance company is liable for their portion of your medical bills. You are pretty much guaranteed to have issues, though, if you have a sick child. Insurance companies are in the business of making money. If you have a sick child, they are not making money off of you. This means that it is imperative that you are aware of benefits, networks, copays, deductibles, and covered vs non-covered procedures and facilities.

I have compiled a list of reasons that you may need to call your insurance company.

1. Confirm that the doctor/facility that you will be using is in network. Even though your insurance manual or website may or may not have a doctor or facility listed, those resources may or may not be up to date. If you are going somewhere new, call to check your benefits.

2. Before a procedure call to check your coverage. Insurance companies will have different benefits for different procedures. Coverage for a procedure done in a doctor's office may have a different level of coverage than the same procedure done at a hospital. Also, not every procedure is covered by every policy.

3. Call to check if an upcoming procedure requires pre-certification. In my last nursing job, I was responsible for pre-certifying all scheduled surgical procedures for the hospital. The facility or physician performing the procedure will most likely be calling to pre-certify because they want to be paid. I would not trust this system. Always call to double check yourself. If there is any change in date or procedure at all, call again. I once pre-certified a patient for a procedure. The doctor then decided to admit him a day earlier to do a smaller procedure before his big surgery. The scheduler did not pass on this change to me, thus I didn't call to notify his insurance of the change. I didn't even know about it until I got a call from the patient a few weeks later because he got a refusal from his insurance company all because the date of admission was different than had been pre-certified. Ultimately, it is your responsibility. Avoid a huge headache in the future by making a phone call ahead of time.

4. You may need to appeal your insurance company if a treatment that your child needs is not covered by your policy. One of "E's" doctors wanted her to do biofeedback therapy. It is not a covered treatment by our policy. We chose not to fight this one because the office had tried to appeal many times for other patients and had never won an appeal with our insurance. The appeal process can be very time consuming, so choose your battles wisely.

5. If your insurance company is delayed in paying their portion of the bill, the doctor's office will need to know why. They do not want to spend their time on calling the insurance company, so most likely that will fall on you. If you get a bill for the full amount of any medical bill, call your insurance company to find out why they have not paid. Then, when you call the doctor's office, you will have an answer to when they should expect their money. Be sure that they note in your file that you called so that you will avoid being sent to collections if your insurance is taking awhile to pay.

When you call there are some essential things to record. I recommend keeping a notebook for managing your child's care. One section should be insurance matters. Be sure to document the date, time, name of the customer service person, and specifics of the conversation. This will be very helpful to refer to if you run into an issue later. Keep all correspondence from your insurance company until each bill has been settled in full.

Our Insurance

2009-02-14T17:29:00.003-06:00

We have the privilege to have health insurance. As my husband is an employee of the state of Illinois, we have insurance through the state. Under normal circumstances, this would probably be considered "good" insurance. The fact that our state has no money has proved to remove the "good."

Our youngest, "B", was born 10 months ago. The state has not yet paid the hospital bill from his delivery. This means that I have 10 months of medical bills awaiting payment. When you have a healthy family, this is somewhat inconsequential. When you have a "sick" child in your family, this is a problem.

At one point, within an 3 month time period this year I called our insurance company 28 times. I checked my phone records to confirm it was that many times. That was only one time period! That doesn't count the number of times that I have had to call doctors' offices because they have not been paid.

It is inconvenient and takes up a lot of time, but with "E's" medical costs having totaled over 6 figures, I am grateful for the coverage we do have!

Doctors, continued

2009-01-29T21:37:00.003-06:00

In our journey through doctors, I have learned a few things.

Doctors can be intimidating. They have a lot of training and usually, they are pretty self-confident. Some are just plain arrogant. It is difficult to question doctors because I sometimes feel inferior. Some of this may stem from working as a nurse with many doctors that treat nurses really badly. My neighbor who happens to be a professor at the medical school nearby made me feel better when he said, "There are x number of students in each medical school class. Do you know what they call the dumbest in the class?...Doctor." That quote helped me to remember that though doctors are the "experts" in medicine, I am an expert on my daughter. No one knows her like I do.

You can learn a lot about a doctor by watching the interaction of the staff in his office. I have noticed that the staff in an office will often model the personality of the doctor. I am sure that there is little statistical evidence to this, but it is an observation I have made. I want to go to a doctor that treats his staff well. My hope is that when the staff is treated well, they will in turn treat me well when I have a question or concern.

There are great doctors, good doctors, okay doctors and some really bad doctors. The lesson to learn...don't settle for less than a great doctor when it comes to your child!

Your child's doctor does not love your child like you do. You are the advocate. You cannot worry about what the doctors and staff think of you. You have a right and the responsibility to speak up for your child. It does help, though, to use respectful language and tone when doing so!

I cannot expect perfection from a doctor. They are humans and will make mistakes. That does not mean, though, that I have to stick with that doctor after a mistake.

If a doctor won't listen to you, find one that will.

If a doctor is too busy to see your child in a reasonable time period then that doctor has too many patients. It may mean that you leave a good doctor, but a doctor cannot be great if he is too busy to take care of his patient load.

It really helps to befriend the nursing staff. When they know who you are and that you are kind, respectful, considerate, and thankful, they will be more apt to help you when you need something. I know this one to be true because I was one of them! This does not mean that you cannot question them. Just do it respectfully!

When we go to the doctor, I always put on make-up, do my hair and wear nice clothes. I, of course, get "E" spruced up as well. I think that it makes a difference how you are treated. Doctors and nurses will spend more time in a room that is warm and pleasant than one that is not. Again, there is probably no statistic to back that up, it just seems like human nature.

These insights may be helpful or may just be my ramblings, but I hope they help you! As parents of sick kids, we are at the mercy of what the team of doctors treating our babies decide. We are the advocate and we have the power to be a part of the decision-making process.

Doctors

2009-01-29T21:06:00.006-06:00

We have been to a lot of doctors. There are some really great doctors and some really bad doctors out there. We have left doctors for a variety of reasons.

The first urologist had terrible interpersonal skills, he did not give us much hope for "E's" long term prognosis, and he wanted to treat "E" with a certain medication but then would not listen to me when I saw some serious side effects of that medication. He stated that the side effects I was noting were caused by "E's" anxiety about the fact that I was pregnant. Incidentally, "E's" side effects resolved immediately when we stopped that medication.

The second doctor was a good doctor. She really seemed to care about "E", but she wanted "E" to continue an antibiotic on which she had a breakthrough infection. That made us a little concerned. I was willing to stick with her a little longer though because I liked her and the way she treated us when we saw her. We chose to look into another doctor when she came into the room and told us she was stumped by "E's" case and her colleagues didn't know what to do either. She did not want to do reimplantation surgery because we couldn't find a cause for "E's" bladder spasms. She wanted to inject an implant that has an extremely low success rate for the grade of reflux that "E" has. Though we liked her, we wanted a doctor that would treat the spasms and reimplant "E's" ureters.

The third doctor was very arrogant and brash. He basically said that everything we had done with "E" thus far was wrong. He made a lot of claims and gave us hope that he had the solution to both the reflux and spasms through a biofeedback therapy that he uses. He took her off of her spasm medication and we did everything that he said. "E" got worse. No one at the office would take me seriously on the phone. I wanted to see him, but he was too busy to see us and thus we saw the nurse practitioner. Then "E" got sick, first with a kidney infection and then with a lower urinary tract infection. When the second infection hit, he refused to treat her stating that it was the pediatrician's job. He had too many patients to treat every urinary tract infection. This is a problem. The urologist would not treat my daughter, a urology patient with a complex case, for a urological issue. Staying with him was not an option!

We have only seen our current doctor once. He is at Mayo Clinic. He put "E" on a medication that I had been asking doctors to put her on for months. "E's" spasms are nearly gone on this medication. He told us that there are a lot of options to treat her spasms and that we were right not to have implants injected. Implants don't work on this grade of reflux. He also told us that the therapy doctor #3 claimed would cure "E's" spasms was done at Mayo clinic in the 80's and it does not work. It was so refreshing to find a doctor that listened to our concerns, made a plan, and executed that plan with confidence. We know he, like other doctors, is not perfect, but so far, he is by far the best we have found!

Switching doctors can be agonizing. Whether you have seen a doctor just a few times, or if they have been caring for your child for years, it is a difficult decision to start over with a new doctor. The biggest fear is finding that you have left the doctor that really is best for your child when you are looking for a one that is better.

When we were deciding what to do after the unfortunate treatment we received from doctor #3, I was really fearful that I was going to be walking away from the therapy that he said could resolve "E's" spasms. What would I do if that was the best solution for her and we were taking her out of that treatment?

A wonderful friend encouraged me by saying, "If you have to go backward, then you do. If that means that you have to go with your tail between your legs and admit that you were wrong to have left, then learn a lesson in humility and do what is best for your child."

The reality is, if you are thinking of switching doctors, there is probably a good reason behind it.

How can I teach my child, who is suffering like this, that God is a good God?

2009-01-29T20:34:00.006-06:00

One of the most difficult emotional obstacles in dealing with a sick child is questioning God's sovereignty. Throughout my journey of being angry with a very good God, I had one question that I really struggled with. How do I teach my daughter, who has to go through so much suffering, that God is a good God?

I spent a lot of time on this one and in my grief, I couldn't come up with the answer on my own. So, I asked people that loved God, me, my daughter, and my family. The best answer came from my sister-in-law.

My sister-in-law has a son with special needs. They have been on their journey of illness much longer than we have and I so appreciate her wisdom. As I shared my struggle, Sarah told me a story that I will never forget.

During a difficult time in their journey with his health, her son found his mom and said, "God speaks to me. And He tells me that I am not a mistake."

It was that simple. It is not my job to show my daughter that God is good. It is His job. My role is to continue to pray, continue to trust, and continue to tell my daughter that God loves her.

I came across a verse the other day that reinforced this truth. Luke 10:21 says "..."I praise you, Father, Lord of heaven and earth, because you have hidden these things from the wise and learned, and revealed them to little children. Yes, Father, for this was your good pleasure."

It is child-like faith that best understands God. Kids don't see God as someone that has let them down, they see Him in His glory. "E" had never questioned God's goodness or love for her. She had never asked why He let this happen to her. She loves God, without question and how thankful I am for that. Once again, that God, that I had been so angry with, proved himself good.

When it rains it pours (and splatters)!

2009-01-24T21:50:00.000-06:00

We returned from Mayo Clinic, unable to do "E's" surgery the first week of December. The next week she fell, while playing in our basement, and broke her arm. Prompt care was sending us to a specialist because the doctor was fearful the break was complicated (it was). Just thirty minutes after I got home with "E" from prompt care, and after we finished our special milkshakes with "L" (middle son) and Daddy, all three of the kids were supposed to be in bed. Jason and I heard movement at the top of our stairway in the open foyer. "Go to bed," my husband loudly said. We hear a whimper and then a sneeze, followed a few seconds later by an enormous sound that I can only describe as a sound like something long ripping. I wish. Our middle son, "L" had thrown up over the railing of our two story foyer. Puke was running down the the walls on the inside of the foyer, running down the banister, on the carpet covering the stairs, and I am pretty sure it hit every tile in the foyer. All 118 of them. Yes, I counted them - as I was scrubbing the vomit off of them. Jason carried "L" to the bathroom where he proceeded to throw up again, all over the bathroom, of course. Who can expect a two and a half year old to hit the toilet, right? So with "L" tucked back in bed Jason and I set off to clean up the mess.

First, I don't do well with puke. As a nurse, when a patient started puking, I would hand them a basin and politely excuse myself to the hall until the noises that accompany getting sick would cease. At that time I would return and make sure the patient was okay. I know, you wouldn't want be to be your nurse, right? When you are a parent, you don't have the luxury of leaving the scene. No, it stares you in the face and mocks you until it is cleaned up and disinfected. My dear husband took care of the most disgusting parts that night while I scrubbed the walls and floor.

Second, by the time "L" was back in bed, I was in tears. What stresses a matter of eight days can bring. My husband looked at me and said,"This is going to make a great story." I replied through tears, "But, it is not funny right now." And it wasn't, but it kind of is now. Kind of.

The point is, sometimes when you are dealing with a sick child, the rain turns into a downpour! You will weather those storms, though it doesn't feel like it when you are getting soaked! And someday, maybe you will be able to laugh at all the water. Maybe.

E's Story

2009-01-24T20:28:00.001-06:00

I am a registered nurse. I have studied medicine. I was not prepared to handle having a "sick" kid. It is an amazing task. In my opinion, it is harder than anything outside of losing a child. To watch your child suffer, to do all you can humanly do and it not help, to deal with other people's (health care professionals) failures, to deal with insurance companies, countless phone calls, mounting medical bills,....... it is overwhelming. It is my hope and my purpose for writing to encourage you in your journey. May the lessons I have learned and the mistakes I have made help you to help your child better than I have.

"E" got sick the first time right around her third birthday. We thought she had a sinus infection. Her first course of antibiotic didn't touch what she had. The day her fever reached 105 we took her into prompt care. The doctor still thought she had a major sinus infection and gave her a different antibiotic. Her white count was 41,000 (normal is 4500-10000). Her runny nose gave us no reason to think that there was anything else wrong with her. Two shots of antibiotic and a second course of oral antibiotics later, she was well again....for a few weeks.

She got sick again and again, every two to three weeks she would run a fever. It always started on a Thursday or Friday and was usually gone by Monday when I would have taken her to the doctor. After she was sick three out of for weekends in a row running high fevers (103+) her primary care provider recommended we check her urine for infection. She had her first diagnosed kidney infection in early fall. That diagnosis led us down the road we have been traveling for the last year and a half.

We saw a urologist that diagnosed "E" with bilateral grade four vesicoureteral reflux and a spastic bladder. In common terms, this means that her ureters (the tubes that connect her kidneys to her bladder) are not connected properly to her bladder and thus urine flows back up to the kidneys. In a sterile bladder this is not thought to be a real problem, in a bladder with contamination (which is common among little girls) this leads to pylonephritis aka kidney infection. Bladder infections if severe enough and without treatment lead to renal (kidney) scarring which can damage kidney function leading to a multitude of issues.

Because "E" also has a spastic bladder, it has complicated her case and thus made her treatment more difficult. The doctor that did her cystoscopy (looked into her bladder) stated that her bladder wall looked like that of a 60 year old (she was three and a half). There is no explanation for her spastic bladder and we have been through a complete workup to evaluate it.

After trying many medications, facing antibiotic resistance and breakthrough infections, having our hopes raised and disappointed, and dealing with more appointments and phone conversations about bladder and bowel function than any parent should, we are finally at a point where we have stabilized "E's" bladder enough that she can have surgery to reimplant her ureters in order to correct her reflux. We are on our fourth urologist and have made one trip to Mayo Clinic. We are returning to Mayo Clinic in February '09 for her surgery.