Thursday, July 16, 2009
yesterday, we had an appointment with urology at CHOP. they did a urodynamics study to see what his bladder does/doesn't do. compared to how it was when justin was still in the hospital, i think he's come a long way.
after justin's closure, he was not peeing at all. they had decided to cath him every 4 hours. his volumes were still a little high at 4 hours, so they moved it to every 3 hours. we were cathing him every 3 hours when he came home, even though he had started to urinate a little bit here and there while he was in the hospital. the first few days that we were home, he was doing awesome. his volumes were lower and continued to become lower. the day of our spina bifida clinic, we had told them how well justin was doing, so they called urology to report, and urology said we could do it every 6 hours, and if they were continuously better, every 8. we've been cathing justin every 6-8 hours for a few weeks now. i was anxious yesterday to see what they would find with the urodynamics study.
it turns out that things are pretty good for him, but he still has to have a small surgery next week. justin's bladder can fill and hold urine, but there is a problem with him voiding entirely. there is an internal sphincter and an external sphincter. justin's internal sphincter voids properly and the external voids properly, however, they are not voiding in sync. this could cause pressure and build up, so he will be having a surgery where they will inject botox as a muscle relaxer to the external sphincter to see if that will help him to release all of his urine at once rather than the build up being there. the remaining urine being built up is what we are cathing pretty much at this point.
he was originally able to be an out-patient for this surgery, but after they realized he is on oxygen at night, they decided he will have to stay over night. it makes sense, but i'm not too thrilled about it. i hate the thought of being in that hospital again. he won't be in the nicu, so he will have an actual room, and they said we could stay with him overnight, but i don't know if it's just one of us or both of us that are able to stay. i'd rather him stay for safety reasons, because i'm nervous about his breathing after coming off of the anesthesia. he slept for about 2 days straight after his closure surgery. that was also when his breathing became shallowed, but it was from the closure, not the anesthesia.
justin's surgery will be tuesday, july 21st. we won't know the time until the night before, but i am glad we were able to schedule it before i went back to work with enough time for me to be here post-op with him. apparently, i'm a bit of a control freak with him, so it will definitely be reassuring for me to be able to watch him for the first few days after we come home.
anyway... onto happier things. monday and tuesday night, justin only woke up once both nights around 2 am. last night.... HE SLEPT THE WHOLE NIGHT! from about 8-9pm til 6am this morning. i am so excited. he is doing awesome. he is 13 lbs, 6 oz, and just shy of 24 inches, so you can tell my little man is growing like a weed.
madi, justin, silest and i took a trip to the park on monday. as you can see in this picture, madi was pretty proud of herself for finding a way into justin's stroller unassisted.
tuesday, she went with GG and uncle to a friends house to see some horses. she had a good time with the horses, but i think she had a better time on their "playground."
this weekend is my cousin riley's first birthday, so madi is looking forward to having some birthday cake. she's already counting down til her birthday party. it is so cute that she is so excited for her birthday. she was thrilled this past weekend for aunt wee's birthday. madi wanted "birthday cake, birthday ice cream, and birthday hats." hopefully she'll get to enjoy herself with all of the other babies at the party this weekend. then i really need to start getting things ready for her birthday. i'm so far behind this year, it's sad. i'm usually so on top of things. it's been hectic the past2 months, so i have a get out of jail free card.