I am so sad, we found out on Monday that Kaitlyn has to have another surgery in December.
About 2 weeks ago, we took Kaitlyn for her 1st Spina Bifida Clinic. We were set to see her Neurosurgeon, Urologist, Ortho & Rehab Med Drs plus have x-ray's, renal ultrasound and urodynamics testing done. We did our testing in the morning and saw the drs after lunch. Anyway, we saw the uro first because he did the urodynamics test, which basically was our 1st step going downhill. This test should have been very uncomfortable for her, but she really just laid there and played with the nurse the whole time and laughed. The first time she had it done at about 6 weeks or so she screamed and screamed. So turns out, he believes she is losing sensitivity and that her bladder is not emptying completely. So he put her on Ditropan to help the bladder some and told us to start cathing her again. So we are doing that about every 4 hours and she definitely needed it, because she will have a pretty wet diaper, and still we get urine after, even if shes not drinking a lot.
We did not get to see our neuro because he had emergency surgery but he popped in and said that he wanted to order a MRI because it could be possible she is retethering. OY, not really what I wanted to hear. We went ahead and saw the ortho and rehab med drs, which that part I thought went well. We got hooked up with a service here in AL, that helps pay for equipment (braces, wheel chairs) etc, and mostly it'll be no out of pocket costs for us, which is awesome. The ortho/rehab drs both suggested she get more PT and some OT because they think it would help her in walking, as she isn't fully walking yet. She can cruise furniture, push toys across room, but not much else. It was sounding so good that she would probably be walking by the time she's 2. That was like music to my ears.
Fast forward to her MRI this past Monday. We got in to the see the NS and he was like come back here with me, that was the 1st sign I knew something was wrong because he normally talks to us in the pt rooms, and the nurse took K for a bit. So he pulls up her MRI results and is showing us the various things that had changed since her last MRI (about a yr ago) and several things were different. First her cerebellum was being pulled down, which means her spinal cord has retethered. She also has some spinal fluid pooling at the bottom of her spine, near her lipoma (Cyst) area and on top of all that, she has a vertebrae that is growing in almost a J shape... :/ her spine is straight, then it has a curve, down towards the bottom and then straight again.... :/ They didn't notice this prior because she was so small and because it hadn't fully formed, is what he said.
So she needs surgery to detether her cord again, he's also going to remove more of the fatty tissue from the lipoma this time, she'll still have some but it'll not be as large. The incision is probably going to be longer and the surgery sounds more complicated this time around. He can't give exact things he'll have to do until he gets in and sees the spinal cord and how bad the nerves are around it and if they grew in etc. If so, there is a chance she will lose more function in her legs/bladder depending on the nerve damage and/or if he has to cut any. He of course is going to try to avoid that at all cost.
He also ordered 2 CT scans on the Monday of her Pre-Op visit, one on her head and one of the spine. The head one is to double check the spinal fluid/cerebellum and make sure there isn't any spinal fluid building there, because if could be Chiari Malformation, which could require a shunt to drain the fluid, which is another surgery. Praying it's not, he doesn't think it is off hand, since her head size hasn't changed more than normal growth.
Surgery is slated for Dec 6, she'll have to be in the hospital for at least 5 days on her stomach to heal and make sure there are no problems etc. Please just pray for us and/or send lots of positive thoughts our way. I just don't know what to do, I thought she was doing so well, trying to walk more etc, but now I feel like it's all come to a stop. If there is nerve damage and he has to cut any nerves, she may never walk. I know there could be worse things, but I was so hopeful after our visit with the ortho dr 2 weeks ago, now I just don't know.
* sorry if this is repeat for some of you reading, but I am trying to keep track of everything in 1 spot for future information.