17mm Dilated

Hi everyone. Ryan and I want to thank you so much for your prayers and support, today and everyday. Ethan is doing great and sleeping right now. He had no problems getting off the vent or the meds which is wonderful.

Just to explain a little about what he had done today. Ethan had a procedure when he was 4 months old called a Nissen Fundoplication. This allowed the doctors to use part of Ethan's stomach and wrap it fully around his esophagus to create a sphincter where he did not really have one (part of the birth defect). What we did not know for the last year and a half is that it was too tight and his saliva was not properly draining into his stomach. It would build up in his esophagus and eventually spill over causing Ethan to cough, gag, and wretch. We were not aware that this was what was happening until very recently because when Ethan vomits, his stomach contents were not coming up due to the Fundoplication. We associated the coughing with his poor respiratory status.

Ethan has been doing so well lately that we were able to finally establish that the coughing was not related to his respiratory tract so I made an appointment with his GI doctor last week posing my hypothesis that he was in fact throwing up. His doctor agreed and set up the surgery right away.

Today, Ethan's doctor stuck a balloon into Ethan's esophagus and dilated the area of the Fundoplication in order to loosen it. The goal is to loosen it enough that his saliva/oral feedings can go down, but that his stomach contents won't come up. It is a very fine line between the two and the fear is that they dilate too much that he begins to reflux again. If his happens it means he will need another major surgery to repair it.

E's doctor is going slow to avoid this. We will see if one procedure is enough or if he needs one or maybe two more. His doctor was able to confirm that after he was done, fluid was draining into his stomach better. We are hopeful and should see in the next few days how much this has helped.

In other news, Ethan is doing fantastic. We have gotten him completely weaned off of his O2 both day and night. We have also been able to put in a smaller trach. He is now able to breathe around his trach tube enough that we can completely cap his trach off so he is breathing completely through his mouth and nose. The next step will be to admit him in a couple weeks and do a sleep study with a smaller trach in and keep it capped to see how well he can breath on his own at night. We are optimistic as Ethan can already sleep while capped during his naps.

We have been having a wonderful summer and just finished celebrating the boys second birthday. My brother Mark Thomas and my sister Liz were here to celebrate with us and we are so grateful for that. Liz is still here and is a huge help with the boys!! She watch Kevin for us so we could be with Ethan today.

Thanks again to everyone for your prayers, we truly are seeing them in action and we can finally start to see the light at the end of the tunnel!

Love, Tina, Ryan, Ethan, and Kevin