1/31

Big update...we are getting discharged tomorrow afternoon! Tomorrow marks the two week mark of being at UNC. I was in desperate need of a break yesterday so Chris's parents drove him, Dylan, Brady, and Cooper to Chapel Hill so that we only had one car here. Chris relieved me yesterday afternoon and I took Dylan and the dogs to our friends Doug and Krista's house in Durham. They were nice enough to let us stay for a couple of nights and Dylan has been having a blast playing with their son Caleb. I came back to the hospital this afternoon so that Chris could get us organized for the big drive tomorrow. It looks like we are on track for an afternoon discharge. From there we will head up 95 and make the trek to Boston. We are getting admitted to Boston Children's hospital on Monday. From what I understand (if we go through with surgery there) we will most likely be in Boston for about 3 weeks. I am excited to put this part of our journey behind us and move on to the next part. Every day that passes brings us closer to being home and healthy. God speed.

 Breakfast with friends!

 Our first big girl bath with Caleb

 Playtime with Caleb

Playtime before bed

1/29

Unfortunately, I don't have too much to update. We had a snowstorm last night that brought a couple inches of fresh snow to Chapel Hill. It was pretty to look at from our room. Other than that I have noticed that the steroids that they are trying to slowly wean Peyton off of are making him ravenously hungry...all...the...time. We are kind of in a holding pattern right now. Seeing that we are 'choosing' to go to Boston Children's UNC will not transfer us so we will be discharged. The case manager at UNC is working to help make sure that they don't discharge us, have us drive to Boston only to find out they don't have any beds. Boston is waiting to receive all of Peyton's records (and it is no short story.) Once they have received everything which should be tonight or tomorrow morning they will contact our insurance and verify everything. From there they will communicate with UNC that we are good to go and we will head up the road. I don't foresee this happening until at least Friday, sigh. We should know more tomorrow and I will update as soon as I hear anything. Goodnight.

 View from our window

 Hungry boy

Starving boy

1/28

Happy Tuesday:) Peyton is doing well although I think he is getting frustrated being hooked up to monitors and stuck in a room. He is eating well and fighting all of his naps. Chris and I have been doing a lot of work behind the scenes trying to get everything set up for our move to Boston although it feels as though we are getting nowhere. I am working with a case manager at UNC, Chris is working with our insurance company, and we are in communication with Boston Children's. My parents left today to head home. Apparently we are supposed to be getting a good amount of snow here, great timing. As of now we are just waiting to be released/transferred. I am not sure which will happen. I will keep you all posted. Stay warm.

Crazy hair after bath

 So great to spend a little time with Dylan

Messy feed

 

1/27

The weekend was quiet. We finally got transferred from the PICU to the Critical Care Unit. We had some visitors which was a nice distraction. Doug, Krista, and Caleb Wixted came to give Peyton a hug and a high five.
I have been having a hard time accepting the fact that the team at UNC wants to put a trach in. It seems very invasive given where we are today. That being said, I was connected with a doctor at Boston Children's Hospital who specializes in cases like Peyton's (TEF, severe tracheomalacia, etc.) I sent him an email outlining Peyton's background and how we got to where we are today. He immediately emailed me back asking me to call his cell phone...on a Sunday morning. I got my questions together and gave him a call. To make a long story short Chris and I are diligently working to get Peyton transferred to Boston. The team at UNC has been wonderful but this doctor offers us an option that is still a major surgery but less invasive for the long term and it actually fixes the tracheomalacia. I don't know when or how we will be getting transferred but we are hoping that it is sooner than later. I should know more tomorrow.

 Grandpa and Peyton at free play

 We love wagon rides with Leo!

Sleeping angel

1/25

There is not much to update. We are still in the PICU waiting for a bed to open upstairs in the Critical Care Unit which is a step down from the PICU. Nothing will be happening this weekend. We have a CT scan scheduled for Monday. All four grandparents had a visit today with Mr. Peyton. Dylan is in Chapel Hill for the weekend as well! Lots of love to go around.

Peyton and Grandma LouLou.

1/24

Sorry I did not post anything last night. Our procedure got pushed back again due to another emergency so we did not sit down with the team of doctors until about 6:30. Peyton spent the night in the PICU for monitoring. Here is what we know so far. He does not have tracheal stenosis he has severe tracheomalacia which presents itself in a lot of TE Fistula babies. Many children out grow tracheomalacia but seeing that Peyton has had two life threatening episodes recently in a short period of time the team is worried for his safety. They want to run a couple of scans on his him to see if any of his internal organs may be pressing against his trachea and causing the severe narrowing. If that is not the case they talked about potentially having to do a tracheotomy. We do not know when the scans are scheduled for but seeing as it is Friday afternoon I assume that nothing will happen until Monday. We are waiting to be moved back up to the Critical Care/Pulmonology floor. If we hear anything or get any news I will be sure to let you all know. Once again I cannot thank you enough for the kind words, prayers, and support. It means so much to Chris and I to know that you are all thinking of Peyton and his well being. Thank you from the bottom of my heart. xo R

1/23 Part II

Another emergency case had to be admitted so Peyton has been pushed back again. We are now scheduled for 3:00. We are going on 10 hours with no food and somehow he is still smiles.

1/23 Part 1

For all of you who are checking back for updates on today's procedure, unfortunately it has gotten pushed back to 2:00. We are hanging in there. Peyton hasn't eaten since 4:00am so we are getting a little hungry. We went to toddler play group for a change of scenery and to pass some time. Dad arrived and Peyton was happy to see him after almost five days!

 Morning from Peyton and Heely

 Group huddle to talk about how well today is going to go!

Group play to break up the day

1/22/14

Thank you all for the overwhelming support, well wishes, and prayer...all are greatly appreciated. Since the modified swallow study yesterday speech has requested that we go back to thickening Peyton's bottles and we are working to feed in an upright position. No more baby food for now. I have noticed that Peyton is much quieter and doesn't sound as 'junky' and congested. He came in breathing exceptionally loud and raspy, almost as if he swallowed a squeaker out of one of Brady and Coopers toys. These lovely sounds were accompanied by a piercing deep cough which has subsided a little. Pulmonology and the Critical Care team both took notice to his quieter breathing. Peyton has had a very happy disposition since the updated feeds which I am hoping means that it is helping with his reflux and not aspirating anymore. We went to toddler playgroup and got one on one attention which Peyton loved.
Anesthesia just came to visit and talk through what is expected to happen tomorrow. Peyton is scheduled to have a GED, Bronchoscope, and depending on what they find and what scar tissue they may see Dr. Zdansky (head ENT surgeon) is prepared to laser. His procedures are scheduled for 12:45pm. ENT, Pulmonology, and GI will all be present and look at their respective parts. From there we expect that the teams will sit down and come up with our options and their recommendation. Fingers crossed and prayers that all goes smoothly tomorrow. I will try and update the blog as soon as we know anything. Until then...

Thank you Chapin and Nick I love my dog Heely!

 

Playing in my crib

 



Happy boy!

 



Toddler group playtime

 



Cuddle time with Mom:)

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!