So today was Colten’s first full day at U of M Mott Children’s Hospital. It was a good day! The staff and environment are both fantastic. We know we’re in the right place for him.
I was discharged today at about 1:00 PM, about 24 hours post c-section. This is really not appropriate, but I think the staff felt bad for me since Colten was so far away. So thank you to them!
While I was waiting to break loose, Richard and my Dad met with the neurosurgeons at Mott’s. Dr. Maher will be the primary and comes highly recommended. He is one of six board certified pediatric neurosurgeons in the state. He recently operated on a friend of ours’ 2-year old daughter, also at Mott’s – and they’re still here, so hopefully we can catch up with them during this crazy time we’re all here.
Back to the neurosurgeon, Dr. Maher. He is “the guy” for Spina Bifida / myelomeningocele and has operated on more cases than most neurosurgeons in the midwest. We’re very excited he’s on Colten’s team. The plastic surgeon that will be on the team to help properly close the area up after he’s put back together, is Dr. Kasten. Coincidentally, We have seen Dr. Kasten a number of times for a vein anomaly that Parker has. So we already have a relationship with him and that was another great revelation today. Dr. Maher said that Colten’s myelomeningocele was actually one of the largest he has seen in terms of how much skin and meninges was outside the body. The hole in Colten’s back appears to be only an inch, which is small compared to how much was outside his body. If you want to see a gruesome picture, go to the previous post and there’s a link to a clear picture of Colten’s back.
Today’s neurological testing came back with no activity below the knees. Yesterday, only movement was detected in the right quadricep but that appears to have returned to a more normal function today. It could have been leftover numbness from being in the breech position so long. We are prepared though, that surgery could cause more damage, so it’s really hard to give concrete answers at this point. Colten also had two ultrasounds – one on his head and one on his heart. After the head ultrasound came back, it was determined that there is a 70% chance he’ll need a shunt but it’s not something they will do tomorrow during his spinal surgery. He will be closely monitored until he gets to the point that a shunt is required. We do not have results from the echocardiogram yet.
Couple more great things happened at Mott’s… Neurosurgery told me I could breastfeed Colten up till midnight tonight. I had been pumping at Sparrow because they were not allowing feedings at all, only sugar water, so to hear that I could finally nurse him directly was very relieving. So Colten and I got some extra bonding time! We also get visitors here – anyone we choose can come see Colten, even the boys. So we’ll try to bring them by this weekend to see their new little brother! I was able to help the nurses today take care of some diapers and change some dressings on his back – I am thankful I was able to be released so early from Sparrow so I could get more time with him pre-surgery.
One of our frustrations at this point is that whenever Colten cries, it takes a while sometimes to get a nurse to help get him out and protect all the wiring attached to him. But we aren’t quite comfortable just getting him out ourselves at this point. He now has an IV in his head because he was messing with the one on his hand, so we need to be extra careful maneuvering him. However, at least we can hold him!
Colten’s surgery will take place at 7:30 AM Friday (tomorrow) and should last approximately 6-8 hours. Surgery for the spine itself will last 3-4 hours. The rest is surgery prep, plastic surgery, and recovery.
Here’s hoping for a safe surgery little Colten!