Last Thursday we took Jayden down to Children's Hospital of Philadelphia where he underwent surgery to have his salivary glands removed and ear tubes replaced. At the last minute the surgeon decided she had some extra OR time and that she would also like to remove his tonsils and adenoids. After about four hours back in the OR we got to see Jayden up in the PICU and were told he did great! He did spend the night on the ventilator but was able to wean off in the early morning.
This was a new experience for us. We are a DuPont family. I love DuPont for so may reasons, but we really had a good experience at CHOP. My only issue with CHOP is that is doesn't have that same family feel like DuPont simply due to it's massive size, but the facility was beautiful and we have no complaints. The reason Jadyen has this done at CHOP was because his airway team in there. Jayden may need some reconstruction of his airway in the future and CHOP would be the place to go to have that done, so we didn't feel like transferring him over to DuPont would benefit him.
The recovery from the tonsils and adenoids was pretty easy. Jayden doesn't swallow so the pain seemed to be relatively manageable. The salivary gland part was a little more complicated. Jayden's incisions were much larger then I expected -- about 1.5 inches on each side of his neck under the jaw. He had significant swelling but seems to be getting much better. The results from the procedure are not exactly what we had hoped for but we do see some improvement.
Jayden has a tongue thrust thing that he does that drives us nuts. Angela did the same thing when she came home to us. It's like he's trying to suck a binky only there is nothing in his mouth. It's something that we can help him overcome but it takes time. With Jayden this goes way beyond a cosmetic or social issue. This creates lots of fluid in his little mouth. Our ENT warned us that if we don't break this habit Jayden will exercise his remaining salivary glands to the point that they will create just as much oral secretions as prior to surgery. Ugh.
Because Jayden has no swallow or ability to protect his airway all this drool goes right down into his trachea and into his lungs. Thankfully now that his trach is inflated with a small balloon his lower airway to his lungs is semi sealed off and protected but now we just see tons of fluid pouring out his trach stoma onto his chest. No fun for Jayden -- no fun for us. Now that his glands have been removed he is creating froth. Not ideal at all. Some of this just needs to settle out -- between the meds he is on and the recovery from all the procedures the result are somewhat clouded. So we are just trying to stay positive and still hope for the best.
Yesterday the girls and I had some much needed girl time. Jadyen stayed home with our nurse and spent the day resting and recovering. The girls and I took a trip to the park and spent some time together -- no boys allowed. I love my girls so much. I love watching them interact. I love watching the amazing love the share for each other. I feel so lucky to call them my own.
Thank you to everyone who supported and loved our family this past week. We couldn't do this without you!