We attended SB clinic this past Wednesday in Birmingham. First, Charlotte had to get a few X-rays, and then we met with her orthopedic doctor. As I have stated before, we were very nervous about her right hip dysplasia and the possibility of surgery. She has been army crawling everywhere and even trying to stand, but her hips still pop. The doctor was pleased with her progress and then showed us how her right hip had improved vastly. It is still not perfect but there is more curve to the hip bone and the ball and socket are more closely held by muscle. My mom and I were both tearing up at the news, and Ben was thrilled as well. The doctor also decided it was time for AFOs (ankle foot orthopedics) to help Charlotte stand without collapsing forward.
We were all ready to celebrate the great “no surgery” news but still had the bigger clinic to head to. We registered downstairs, Charlotte had a CT scan, and then we began the wait. Clinic is a long day when things are running smoothly, however our neurosurgeon was in the OR for an emergency surgery, so it was a very long wait. About an hour or so into the wait, Nadine, our neurosurgeon’s nurse came out and said she wanted to see how Charlotte was doing. She is wonderful and I didn’t think anything about it. She asked me questions about how Charlotte was doing and then gave me the bad news that the CT scan showed enlarged ventricles in her brain. We were all shocked, because Charlotte has showed no signs of shunt malfunction. In fact, she has been doing excellent lately; moving around more vigorously and continuing to have an enormous appetite. Nadine warned us that we could have a long wait ahead but she would try to get us in to see Dr. Wellons as soon as possible.
I think Ben and my Mom were hoping they might wait and see how Charlotte did. I’m not typically a pessimist, but with things like this I assume the worst. I tried to hold myself together as we sat waiting and the hours slowly ticked by. We saw Dr. Wellons around 4pm and he informed us Charlotte would need surgery on Tuesday; unless she started displaying severe signs of malfunction. The shunt is three parts, and he informed us that the part that is malfunctioning 85% of the time is the piece in the brain due to tendrils wrapping around it. They will check all parts, but most likely will need to replace this. We discussed all we needed to do, signed papers, and nailed down times. Then, as an after thought, we mentioned that her urine had smelled strongly for the past few weeks.
I had called my pediatrician awhile back about it because I was a little worried; though she had no fever or fussiness. He said to call him if she developed a fever, which she never did. We all assumed it was from the massive amount of veggies she eats. However, Dr. Wellons said they would test her urine because they do not want any other infections untreated when they operate. I began to kick myself, thinking I should have had her tested long ago. Our urologist’s nurse came in to take a urine sample. She told me it looked very clear and that I hadn’t missed anything, so I relaxed a bit.
Nadine then took us to meet with anesthesia who gave us paper work. Then it was onto draw blood. That went terribly. The nurse was fast but Charlotte was out of energy and screamed the whole time. Last was an X-ray of the shunt. During all the x-rays and scans I could not be with her because I am pregnant. It was hard, but standing outside the room during that last one nearly broke me. She screamed and screamed, and I couldn’t even tell her it would be alright. Finally, all exhausted we headed back to my grandparents.
Yesterday, while I was in Wal-Mart, Nadine called to tell me that Charlotte does indeed have a UTI and would need to start antibiotics immediately. The nurse was wrong. I had missed something. I had missed something major and allowed my daughter to have a UTI for weeks. I broke down in Wal-Mart, hating myself and my carelessness. I am Charlotte’s advocate. It is my job to make sure she gets the care she needs even if it means being the pestering parent who calls the Doctor about everything. I had failed.
The UTI also means that Charlotte is most likely retaining urine and will need to start in and out catheterization. We knew this was a possibility, but now it is one more thing to face, one more health issue that needs to be resolved.
There are parents dealing with much tougher situations at clinic. My heart hurts for them and all that their own children have to endure. Yet, it doesn’t make what I am going through with my own daughter any less painful. When it is your own child there are no comparisons; they are yours and you hurt for them. And maybe people would think that those initial surgeries were harder, because she was so incredibly young and fragile. But I’m finding that to be false. It almost seems harder now because I know her more. I know her better than anyone. And she knows me and expects things from me. I can’t explain to her why, when I wake her at 4:30 am Tuesday morning, I am not feeding her. I know it will be miserable because Charlotte will be tired, confused, and hungry, wondering why she can’t be fed.
This surgery is basically inevitable with SB, but you still hope and pray that your child is the rare one who makes it to 25 before needing surgery. And for reasons unknown to me, the likelihood of failure after the new shunt is placed is very high. Most often, it takes several surgeries to get a working shunt. I am praying this is not the case for Charlotte but I am afraid none the less. Dr. Wellons has been a wonderful surgeon and he does this often. But brain surgery on my child will NEVER seem routine.
I am very grateful that Charlotte does not have to have hip surgery and I am also grateful they found this malfunction before it was causing severe signs. However, I sometimes want to tell God “enough. We have enough on our plate right now. Do something to me instead of my daughter. Are you punishing her for my mistakes, or my lack of faith? Please quit using her as my trial.” I wish I could say I’m at peace with all this. That I’m counting it all joy. Maybe joy comes later. Maybe you just have to endure for awhile and then when you think you can no longer endure God in His grace places joy in your heart. For now, I’m just praying that God would help me get through this and for the miracle that the shunt surgery would go smoothly and work wonderfully.