A New Beginning

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

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

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

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

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

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

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.