Today was a big day. It has been on our calendar for months in big red letters CHOP Urodynamic Study. This was the 3rd time Jarrett would undergo this big, expensive test and hopefully our last. What many do not realize is that the biggest impact Spina Bifida has on Jarrett is effects his bladder and bowel. To sum it up his bladder is weak and leaky. His bowels have no nerve control and cannot go to bathroom on his own to poop. He wears pull-ups to catch the urine in between his catheterization every 3 hours and does a cone enema every night to evacuate his bowels to prevent him from having accidents. This little kid deals with a lot and he never argues, fights or complains about anything. He is amazing. We have had some long and challenging conversations about why he needs to do this stuff and he seems to get it. It still does not make it easy for him to go through so much at such a young and precious age. These are the times when Spina Bifida just sucks.
We had a long appointment with our urologist Dr. Szderic at Children's Hospital of Philadelphia in May and we talked about how uncomfortable Jarrett is becoming wearing pull-ups and being wet all the time. The medication he was on (Ditropan) had terrible side effects and was not working. The liquid training and cathing had become pointless. We talked about many options from medication to liquid training and more frequent catheterization, but felt we had done all of that already. My biggest concern as a Momma is that I never want his life to revolve around his disability or his toileting needs and to be honest, neither does he. We decided to schedule the VUDS (video urodynamic study) to really get a big picture of what the little man's bladder was doing and what it is capable of.
We have talked to Jarrett about this and why we were doing this and even talked about the big surgery that could be in his very near future. He asked many questions, good questions and he decided for his little 7 year old self he wanted to proceed. This child never ceases to amaze me. He is wise beyond his years.
Today we had the VUDS and learned that Jarrett has a big, healthy bladder. His doctor said it looks like a perfect oversized lollipop. We also learned what we already knew, his bladder neck is weak and leaky. At low volume pressures his bladder leaks a lot. We also learned he is a perfect candidate for this bladder reconstruction surgery and cath port. These were exactly the results we have prayed for. The doctor did offer us one more option to try before we proceed with the surgery. We will give it a go. We have nothing to lose by trying and everything to gain if it does work. So on Friday Jarrett will be home with Momma while we start this new medication process. Mainly to see if he has any adverse reactions and for me to learn how to do this. One of the medications will be injected directly into his bladder through the catheter twice a day and the other he will take orally twice daily as well.
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| Watching Rookie of the Year during the VUDS. That balloon shaped image above Jarrett's head is a pic of his beautiful healthy bladder. |
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| All smiles before the VUDS |
Jarrett was a trooper through the 1 hour trip there, the 2 hour test as well as the 1 hour drive back home so he earned a reward. His favorite part of going to CHOP is visiting the cafeteria and getting some chocolate pudding with whipped cream. He more than earned his treat today. Look at his smile. He is worth all of this extra stuff I have to do. He is fearfully and wonderfully made and I am so proud God chose me to be his Momma. Please say some prayers for us as we enter this new phase of our SB journey.
