2/26

As my Aunt Nancy keeps reminding me 'we all have a lot to learn from this little guy.' I truly believe that. I am in awe at how happy Peyton is overall on a daily basis. With everything that he has been through, the tests, procedures, surgeries, hundreds of IV sticks, etc he continues to put a smile on his face. It continues to make my day. ENT/ORL came yesterday and scoped Peyton. They found that his left vocal cord is 'weak.' I inquired what they meant by 'weak' because to me that was positive, it wasn't cut, it was functioning just not to full capacity. They said they categorize the cord as moving or not moving. They saw small movements but they let me know that because he is so small it could just be vibrations that they were seeing. They told me that in 80-90% of the children they see this in post surgery their vocal cord strength returns...it just takes time. That could be weeks, months, or years. The positive is that it has only been two short weeks since surgery. They told me that there is a procedure that they sometimes do where they actually move the vocal cord that is not working closer the one that is so that the airway in fact closes. This has risks associated with the procedure. It narrows the airway which can cause respiratory and breathing issues which is what put us here in the first place. They definitely did not push this on me as an option. They then regrouped with Dr. Jennings and his team and presented me a plan. Seeing as it is not safe for Peyton to eat liquids of any consistency they need to insert a feeding tube. There are two options, an ng tube or a g tube. An ng tube goes in the nose down to the stomach. A g tube is surgically inserted through the belly and into the stomach. As a collective we all agreed that a g tube was in Peyton's best interest. I had always thought of a g tube as a long term feeding tube. They assured me that it can be as short term as we need, hopefully to get us over this hump. So, from here they will schedule time in the OR and insert a g tube. We will then need to be trained on this device and how to use it etc. All liquids and medicines will go through the tube. We are allowed to feed Peyton thickened baby food by spoon. Hopefully he will be able to retrain himself how to swallow without aspirating and this will just be a blip in the grand scheme of things. As for the answers to some of the many questions I had: no this will not delay his speech, no there is nothing that I can do to help him regain cord strength, yes he can bathe, yes he can swim, yes he can go to the beach, basically what I am saying is that he will be a normal baby and can do everything that Dylan can do besides drink a bottle. There are a few other tests that they need to run to rule out the VACTERL association (no they do not think that he has this but they need to check all of the boxes.)
We have scheduled the next ENT scope for one month from yesterday. Hopefully at that point he will have gained more strength in his left cord and we see them working! We have also scheduled a modified swallow study for that day to see if there has been any progress with him aspirating less. I am confident in our team here. My ultimate goal is to be Peyton's advocate on a daily basis and choose the correct course of action to get him to be able to lead a normal life as soon as possible. I truly believe that we are getting there. It may be some time before we get home to Wilmington but I am beginning to see the light at the end of the tunnel. I continue to thank you all for your support.

"You can do all things through Christ who gives you strength." I am not the most religious but this quote continues to give me the strength that I need on a daily basis.