Pierce Day 48

Well, it's never too late to start a day by day updated blog, right? It's been a fairly busy several days, and seeing as Amy and I have been told different information by different doctors seemingly every hour on the hour since Pierce was moved back into the NICU, I will work from the assumption that everyone is completely in the dark about the current status and plan of action. This is probably a pretty safe assumption because I myself had no clue what was going on until a few hours ago.

Pierce's surgeon, Dr Fenton has been out of town for several days, and we were waiting for him to come back today (we were told to make a decision about when to proceed with surgery, as this seemed to be the foregone conclusion of every other doctor and surgeon who poked their heads into the room.)

While Amy was at the hospital this morning waiting to talk to him, she was informed that his flight was delayed due to the air France threats. Obviously he had no control over that, but the frustration of waiting and waiting with no answer had both of us wanting to strangle him at that point. Finally we were able to talk to him, and here is the updated information and plan as well as I know it.

What Pierce is dealing with right now is called tracheomalacia. It is common in babies who go through the TEF repair surgery, however, not usually as extreme as Pierce's case. In his case, with the severity, they believe there are only two possible causes. Either he has severe reflux which is causing distress to his trachea on the inside and causing it to shut down intermittently, or his right innonimate artery is pressing on it causing the collapse. Because they can't rule either out yet, what they are doing is changing (or actually already changed earlier today) his NG tube to a NJ tube. What that means is that his feedings will be delivered directly into his intestine, skipping the stomach. This will allow them to extubate him and monitor for any further Bradycardia/apnea issues. If his little episodes stop, they will know that it's the reflux causing the issue. If they continue or worsen, they will know it's the artery at which point they would proceed with the aortopexy. Aortopexy is a surgery where they go through his side, with an incision very similar to his TEF repair and staple his aortic arch to his sternum to relieve that pressure. If it's the reflux, they can do a procedure that disallows anything coming back up from the stomach, but would also more than likely have to insert a g tube through the wall of his stomach for food. Typically TEF repair children have a difficult time swallowing and eating as it is, so the additional procedure to disallow the reflux would compound that.

It will be a very intense few days for us as we monitor his status and pray for the best outcome. Honestly I don't know what to hope for as far as the cause of the issue, I just want him to recover and get healthy. Thank you everyone for the prayers and well wishes. I will try to update this a little more often so that everyone is up to date.