Harvesting Joy

Jameson is now hooked up to ECMO. It is amazing how fast he went from slightly stable to death's door. It is amazing how he found the strength to make it through the transport. Hubs and I both agree that is has never been more glaringly obvious just how tenderly God holds our fragile boy in his arms. How's he held him and strengthened him to make it this far. Literally seconds before the ECMO machine turned on his lungs massively failed. As I sit here listening to the thunder and lightening and think about my babe resting and healing just down the hallway I am reminded of just how awesome and powerful and merciful my God is.
ECMO is a machine that pumps all of J's blood outside of his body, thins it a bit, oxygenates it like the lungs do, and then pumps it back into his body. This allows his lungs to rest and hopefully heal. What this does is buy us is time for the lymphangiomatosis treatments to kick in. We will be meeting with more specialists in the morning and J will probably start a new treatment that will hopefully work more quickly that interferon. Rapamiacin is a medicine we were hesitant to try before as it can cause pulmunary edema and renal failure- both things that J's body have been struggling with already. Miraculously, ECMO will control the lungs so pulmonary edema is not a huge concern and dialysis can be added to ECMO making kidney failure much less of a problem as well.
ECMO is a risky procedure but J was running out of time. We are hopeful that he will be able to heal while his body rests.
We no longer have a sleeping room at the hospital but the nurses generously gave us an empty room last night. J has so much equipment that even fitting a chair in his room is a tight squeeze. At this point, I don't think we are ready for visitors besides family. Please keep the birthday boy in your prayers and praise Jesus for all three glorious years.