Now I'll back track. So as soon as we see Braylee up on the pediatric floor after her surgery, she had 2 egg sized lumps on her head. When feeling them they felt like they had fluid in them. We asked the doctor on the floor if this was ok and he assured us yes, it'll eventually go down. Now this doctor we have only dealt with 2 times in all of our time at that hospital so we didn't know him very well. Well fast forward about 4 days and the fluid, which was blood started to drain out of the trouble spot. Her surgeon told us to wrap her head and it will help everything go down. On her one week post op he walks into the room and immediately asks why her spot is all wet and crusted. Come to find out the pediatric doctor had never told him it was that much fluid. If he had then her surgeon would have immediately come up and drained it with a needle. He was very upset they didn't call him. Now we are all very nervous about what the trouble spot is going to look like once it dries up and we can finally take a look. We kept in constant contact about it's progress. About another week goes by and we are on our way down to Dallas, TX for the Children's Craniofacial Association Retreat and we noticed the brand new incision on the back of her head looked like it's separating. I immediately sent pictures and he assured us that we were still ok to continue on our trip and it didn't look very concerning to him. Then finally on the trip her trouble spot stops draining. We made a plan with him to come see him when we got back so that he can clean it up and we can look underneath the scabs. So last night she took a shower and I assessed her incision and it still looked angry. We get to the appointment today and he walks in with all of his supplies. He starts to gently scrub and try and get the scabs to come off but the big spot just wouldn't budge. So he finally said well guess I'm digging in to see because I've been losing a lot of sleep over this and I just need to know... yep Me too... Me too. So he cuts the scab off and voila it's a closed incision!!! Now that we had that out of the way we started talking about our other concerns and he starts looking and yep she is starting to have a reaction to the stitches. She has a very small strip down from the trouble spot that should close on its own because it's healthy and so close together. Moved onto the back and sure enough same thing but this one is very angry. He checked it out really good and there's no infection, it all looks healthy it's just a little pissed off. So we are giving these spots around 10 days to do their thing and heal. If need be he will throw a couple stitches in, just a different type and it should all be good. So as usual it's been one heck of a rollercoaster but after today we all feel a little relief and can maybe see the light at the end of the tunnel. Phew, sorry l rambled on, that was a lot of information😂.
As I mentioned before we got to attend the annual CCA retreat. Here we meet people some with Apert and others with different syndromes or craniofacial differences who are going through some of the same struggles, surgeries, and emotions that we do every single day. It's so great to be able to talk and have someone who can relate and possibly give you advice. We made so many amazing friends!! The girls were super sad to say goodbye. It is always an amazing experience and we can't wait to go back next year!
I'm going to post pictures below so if you don't like blood or anything then don't scroll any farther.
