1/21/2014

I have been getting an overwhelming amount of texts, emails, and phone calls asking how Peyton is doing so I figured that it made sense to have a common place to direct people to go to get the latest updates. For those of you that are looking for a little background here is what has been going on in the life of Peyton. The day Peyton was born we found out that his esophagus was not connected to his stomach. The next morning that was repaired with a TE Fistula surgery. He was intubated for about a week as a precautionary healing process. After the week was up they fed him liquid and agreed that surgery was a success. We brought him home and sometimes when he would start to cry and fuss he would turn blue and pass out on us. He always came right back to pretty quickly. It wasn't until fourth of July weekend did we have our first big scare. We had just gotten back from a nice walk in the park and on the ride home I had fed Peyton his bottle. Once home, I put him down and within a few minutes he started to cry a strange sounding cry and all of a sudden he got very tense and had a blue spell and passed out on us. Chris performed CPR and I immediately called 911. Peyton was unconscious, not breathing, and no pulse for 3 and a half minutes. The ambulance, fire truck, and police arrived and helped to get Peyton moving a little air. We landed ourselves in the PICU for a week where many tests were performed trying to get to the bottom of what was causing these periodic blue spells and coding. After having and Endoscopy the Pediatric GI found his esophagus to be extremely constricted above where his TEF surgery was. He said that his esophagus at its narrowest was the same size as a piece of hair. That is when the dilation's began. We started dilating his esophagus weekly, then bi-weekly, and so on. We had him dilated the Thursday prior to Christmas and the Ped GI was extremely happy with where his progress was at and said that we wouldn't have to dilate him again until late Spring. Two weeks ago while feeding Peyton pureed food he stopped breathing, turned blue, and passed out. I could not clear his airway. I called 911 and Chris ran him next door to our neighbor who conveniently enough is a PICU doctor. Thankfully he was home and was able to clear his airway. We spent a night in the PICU under observation. We were discharged the next afternoon. Five days later after feeding Peyton his bedtime bottle he had another blue spell. It took a couple of breaths to revive him. We scheduled an Endoscopy and a bronchoscope for last Friday. The doctor performing the bronch found that Peyton had pretty severe tracheal stenosis (narrowing of his trachea.) They immediately admitted us to the PICU. The following day (1/18/14) they had Peyton airlifted to UNC Chapel Hill. I drove to meet him there. Since Saturday we have been being monitored by a team of ENT, GI, Pulmonary, and Pediatric Critical Care doctors. They have done a series of x-rays, viral tests, etc. That brings us to today (1/21/14.) We had a swallow study and a modified swallow study done this morning. With the swallow study they laid Peyton flat and fed him a bottle of barium to watch his swallowing function. They then sat him up and fed him different consistencies of food to see how he did swallowing as well. What was assessed were a few things. 1. His esophagus still has a slight narrowing. 2. He has internal reflux to the point that he swallows his food but it then quickly starts creeping back up getting extremely close to his vocal cords 3. He is trying to compensate 4. He is aspirating when drinking a regular bottle...a lot. So....all of that being said speech has put him on thickened feeds again and will review the studies and come work with us to see how we can help Peyton through his feeds. We have an exploratory scope scheduled for Thursday. GI, Pulmonary, and ENT will all be partaking. From there they will come up with a plan and present it to us. As we find out more I will update the blog. Other than that, on a positive Peyton and I went to group toddler play time today. Peyton absolutely loved getting out of the room and his hospital crib and playing with toys! I will update as I hear more.
xo
Ryan

                                 Playtime...then sleepy time                                 

Tea party with my friends



We are 8 months old today!