Here's the entire scoop of Abby's doctors' appointments on Tuesday and Wednesday!
Abby went to see the ENT on Tuesday with Matt and a nurse. (You wouldn't know it by the amount of times I've had to take off, but we really do try to split the appointments as much as possible!) It was a good visit and Dr. T thinks that she is developing well. The trach site looks good and he gave us a few suggestions on how to keep the site from getting so red. He will be doing a bronchoscopy (scoping her airway) during her palate repair to see how it is growing. During the palate repair, he will also see if she needs tubes (90% of cleft palate kids do, so we're figuring she will) and put them in then. He'll also do a comprehensive hearing screening using brain waves (they aren't questioning her hearing, but they just want to make sure). I'm glad that they'll be able to get so much done at once so that they won't have to put Abby under anesthesia any more than necessary. At his suggestion, I called to make an appointment with the cleft palate clinic to schedule a consultation and get the ball rolling on that.
Low and behold, I was able to get it for the very next day, on a day when we were already going to be there!! This is no small miracle, my friends!!
So we headed back up again on Wednesday. This time, Matt and I both went. Afterall, this was the BIG appointment about her ribs and we both wanted to hear the news firsthand. We would be crying after this one, one way or another!
We met with the chief of pediatric surgery, who is the only pediatric thoracic surgeon at JHH. He checked out Abby's x-rays and noted that the gaps are posterior. This means the gaps are away from the sternum, closer to her side. He was happy about this because it means that the sternum is strong and the gaps won't do as much damage. Dr. C assured us that her lungs and heart were well-protected and that we didn't need to be extra-careful with her. Furthermore, he said that as long as she was breathing well and was able to be weaned from the ventilator, he didn't see any reason to do any surgery at all!! He claimed that lots of kids live very "normal" lives with rib gaps.
When we asked about the titanium rib surgery, he said there was no reason to pursue that because Abby isn't that severe. Thank you, Lord! That surgery scared me so much!! If they did do surgery on her, it would be relatively minor in comparison and would be using bone grafts from her good ribs to fill in the gaps. Right now,, though, Dr. C just wants to leave her alone and let her grow. Yay!!!
As expected, we cried happy tears and enjoyed a moment of thankfulness together. :)
So then, we headed over the the cleft palate clinic, where we saw a plastic surgeon who does ALL of the repairs for JHH. He does about 650 a year!! Craziness! We really liked him a lot and appreciated the time he took to explain everything to us. He even drew diagrams!
Abby's palate repair will be at the end of September, when she is 11 months old. This will allow the palate to be intact and avoid speech problems. (We'll still have some because of the trach, but let's not have anymore than necessary!) It's her soft palate that is cleft, which is the best place if you have to have a cleft. Hers will be a simple repair and she'll only be in the hospital one night if all goes well.
Dr. R will also follow her jaw growth, and ENT and he will determine together if a jaw distraction will be helpful for Abby. If it will be useful, it could speed up the amount of time she has to have a trach!! Ahhhh, decannulation (removal of the trach) day will be a national holiday in our family!! We'll know more about that after her palate repair when they scope her airway.
Abby's next appointment is on Monday, and it's a swallow study evaluation to see how she does drinking a bit of milk by bottle and eating solid foods!! I am SOOOOOOOO excited about the prospect of Abby getting to eat by mouth! I know that g-tube removal is a long way off because she'll have to be able to get her nutrition by mouth before that can be taken out, but anything by mouth is a start!!!
After this round of appointments, I can now safely share that we are planning for Abby to be weaned from the vent this summer!!! It had been mentioned in our last pulminology appointment, but we were waiting on ENT and thoracic to confirm it. We'll do an elective admission to good ole Mount Washington for about a week, where they will slowly wean Abby under close observation. I'm thankful for that though, because I'd much rather do that in the hospital! It's much safer! The goal is a complete weaning, but they definitely want her at least off during the day. We have another pulminology appointment in June, so we'll hopefully schedule the weaning at that time. I can't wait for decannulation, but right now, I will very gladly take a deventilation! (no, that's not really a word...but I really just want her off of the ventilator!)
Alright, I think I've caught everybody up to speed on all of the medical news. Does this even make any sense to anyone else?! I have no idea. But I figure that at the very least, you can know how to pray and how to praise...because there's a whole lot to praise God for in Abby's life!
Thank you for all of your prayers. We are, to say the least, ecstatic about all of this good news. I don't dread going to the doctor anymore because I can actually have hope that we'll get some positive information! :)