For anyone who doesn't know, our 6 month old Tucker was born with a congenital hand defect known as Complex Complete Syndactyly which means, in his case at least, that his middle, ring and pinky fingers were fused together.
I'll have our previous updates linked down below if you need to catch up.
We drove up from our home in Central Virginia to my aunt's house just outside of Philadelphia on Tuesday for the surgery on Wednesday. You don't get your surgery time until the day before so we called while we were driving and were told that our arrival time was scheduled for 6am Wednesday morning.
We got up crazy early and headed into the city and made it to the hospital by 530am. The orthopedic surgical center is in the Woods Center building of CHOP and it has its own parking garage but something to bear in mind is the clearance is very, very low. We parked our Honda Odyssey there when we came for our consult with no problem but for this trip we drove Beau's 2016 Toyota Tundra Pro and it was too tall. When you go to pull in, you have to stop at a guard shack and they have a sensor on it that goes off if your car is too tall and that allows you to turn around rather than finding out the hard way that your car doesn't fit. We parked across the street and had to walk through the the Buerger Center building and across the walkway into the Woods Center. We didn't have any issues but we were very glad we had allotted extra time and had gotten there early.
We checked in with surgery reception and after about 20 minutes we were called by his nurse and taken back to his pre op room. They had us change him into a gown and they took all his vitals. While we were there we also saw the surgeon Dr Chang, the anesthesiologist as well as his student/resident and a surgical nurse. Everyone was absolutely wonderful. They were very patient with our questions and explained everything well. After everyone had left, Tucker decided that he had had enough with being awake and fussed until Beau got him to fall asleep. Right after that the surgical nurse came back to get him. Beau was able to hand Tucker off without waking him off so he went straight from sleep to being under anesthesia which was great. I was concerned about him getting upset when he went back but it worked out great.
We were taken back to the surgical waiting room where we sat up shop and waited. Dr Chang had originally put down that the surgery would only take 2 1/2 hours but he decided that morning to go ahead and separate the tips of his middle and ring fingers rather than just the pinkies so the surgery actually ended up taking about 5 hours. There were a couple of nurses who handled regular updates for all the families in the waiting room. Ours came to give us updates every hour so we felt very in the loop while he was in the OR. They also had a large screen in the waiting room that had each child's initials and date of birth as well where the child was. So it would say in pre op, waiting for OR, in OR, in Recovery, etc.
Once he was out of surgery our wonderful anesthesiologist Dr Schwartz came and found us. He said everything went great, that Tucker was fine and that he would come back in about 20 minutes to take us back. When we went back, Tucker had woken up from the drugs but had fallen back asleep on the nurse. She handed him over to me and we rocked for a bit while he debated waking up. He woke up enough to nurse a little bit then woke all the way up when Beau started getting him dressed and into his carseat. Dr Chang came by again before we left and let us know what all he did and what we should expect with the next surgery.
Once he was completely discharged, we loaded him up in his carseat and set out for home. We had debated for awhile on whether we should go back to my aunt's house after the surgery but we eventually decided to try and get home while he was still sleepy from the anesthesia. We left the hospital around 330pm and ended up getting stuck in some traffic so we didn't get home until 1130pm. He slept almost the entire way. He woke up a few times crying but was happy with a bottle and his pain medication.
That night at home was rough but he seemed to be feeling better the next morning and went right back into his normal schedule, taking his naps normally and was ready to go to bed at the normal time. I do think the pain medication they gave us (liquid Oxycodone) made him a little uncomfortable. He would settle down like he was drowsy but he would fidget a lot. He would fall asleep then wake himself up not too long afterwards. His post op nurse said that he shouldn't' need much of the oxy and we could use Motrin after that. So after a couple of days, we tried the Motrin and he was happy as a clam after that and slept like a champ. After another couple of days, we went down to a dose of Motrin right before bed for a few nights before he didn't need it anymore.
We are now 2 weeks post op and he is doing fantastic. The casts are interesting to say the least. He figured out how to roll over on the floor with them within a day but rolling over in bed was a bit harder for him to manage. We put him down to sleep on his back but since he's learned to roll over, he's been a side or tummy sleeper. It took him several days to figure out how to get onto his tummy without getting tangled in his blanket and he still has trouble getting back onto his back.
He is able to scoot around on the floor about as well as he could before his casts which is great. The biggest difference is that instead of doing his "inchworm" scoot across the room to more of an army crawl. He can get to the toy he wants then either just whacks it with his casts or pins it down against the floor and tries to chew on it. It seemed to frustrate him a bit at first but he's gotten used to them and just figured how how to get what he wants. Food has also been a little tricky. He had started Baby Lead Weaning about a month before his surgery and he couldn't understand why he couldn't get the food he wanted to his mouth. We have ended up just spoon feeding him or letting him suck what he wants off of our finger. Not really ideal but its only 3 weeks in the casts so.
The casts he has have his little thumbs poking out so that we can check that he isn't having any circulation issues. The problem with this was that he decided to start sucking on them. We also quickly noticed that the cast was typical hard cast material which is hard and rough. He was scratching himself with them (as well as us) so we've ended up keeping socks over them to keep him away from his thumbs and so he can't scratch himself and so far that's been working great. He's also managed to somehow get his hand either twisted or slid down inside the cast and one of his thumbs isn't poking out anymore. We can see it in the cast but haven't been able to get it back out yet. It doesn't seem to be bothering him though so we aren't too worried about it.
A part of his surgery was a skin graft. They took the skin from his groin area so he has an incision from his right hip to his lower groin. The incision has internal stitches and a layer of surgical glue over top of that. It doesn't seem to make him uncomfortable at all but we have found its a little difficult to keep clean. They told us it would take about a week for the glue to fall off (which most of it did although there are still a few spots where its hanging on) and until it did, we couldn't put any cream or ointment on it. So because he spends almost all of his time on his belly, any time he would poo, it would all go towards the front of the diaper and onto that incision. We are very careful and change his diaper as soon as we notice its dirty or wet but the incision is in the crease of his leg and it was tricky to clean without disturbing the glue. Now that the glue is about gone, we've been keeping Aquaphor on it which helps keep it clean.
We go back up in about a week for the cast removal then we are done until July when he will have his next surgery, this one to finish separating his middle and ring fingers. This could possibly be his last surgery but there is a decent chance he will have one or possibly even two more hand surgeries. Dr Chang said as he gets older, the skin between his fingers could start growing up between his fingers again so depending on how that goes, he may need to have a procedure to correct that. He will also have the option when he is at least 7 years old to explore having his right index finger operated on to attempt to straighten it out a bit. I had a surgery done to try to straighten mine when I was 12 (we have the same index fingers) but it didn't really work. But once he is old enough, he can make the decision for himself if that is something he wants to explore.
Thanks for following his journey through this first surgery! I will be post a ton of pictures of his hands once we get the casts off. We haven't seen them at all so we are very excited to see what the end result is! I'll also leave the links to our surgery video as well as previous posts below!
Thanks guys!!!
Tucker's Hands:
http://www.thereviewhq.com/2016/08/tuckers-hands.html
Tucker's Syndactyly Update:
http://www.thereviewhq.com/2016/09/tuckers-syndactyly-update.html
Tucker's Surgery Update:
http://www.thereviewhq.com/2016/12/tuckers-surgery-update.html
Tucker's First Surgery Video
https://www.youtube.com/watch?v=44xtPm5V6Xk&t=2s
