Long Winding Road

Today has been a hard day. Andrew's trial off ECMO did not go nearly as well as last Thursday and no one seems to understand why. He is able to oxygenate fine, the problem seems to be with ventilation and getting rid of carbon dioxide. To look at his monitors while clamped, you wouldn't guess there was any problem, but then when the blood gases come back it is without question that he is back to needing ECMO to stay alive rather than just buying us more time to use lower ventilator settings. With that said, time on ECMO should only make your lungs better or the same, not worse and we are very fortunate that we did not come off ECMO while things looked very promising last Thursday, his right lung would not have been enough to support him through whatever is going on in his body presently.

Over the last several days, Andrew's pulmonary hypertension issues seem to be worse and his belly seems to be very distended and tight even though his drain is working and putting out quite a bit of fluid. He has vomited around his nasogastric (ng) tube about once a shift for the last 2-3 days- they did pull his ng tube back some this morning after looking at the x-ray results. They are consulting the pediatric general surgeon to see is he has any other advice or input.

Andrew is starting to approach the time frame on ECMO where more complications can develop and the doctors are anxious to try and get him off if at all possible. For that reason, we will be trialing off again tomorrow and possibly for several days in a row hoping to avoid some of the complications from long term ECMO use. These days are completely exhausting and draining for all of us. We hope that you all understand that because this has been so trying, we will probably not be posting as often given that no changes arise. Please know that if there are any major changes, we will definitely be letting everyone know. Thanks so much for the support and the continued prayers for Andrew!