Monday Night Update

I want to start by saying Thank you. Thank you for loving my boy so much and caring about how he is doing. Thank you for being patient and showing me grace when it takes me so long to update. In the hospital at times things move so slow and it seems you are waiting constantly to see a doctor to get a test result to find an answer and then at other times things move so very fast that you can barely keep up with the changes and the plans. This morning was the crazy frantic pace. This afternoon I am thankful for the waiting that means that Alex has stabilized to a point where the doctors and nurses don’t feel it is critical to make changes and order tests so quickly.

We never saw hematology again, but I do know that they found another clot. I am unclear of the details. I also know that at least one of his clotting labs is off. I am hoping to get a better feel tomorrow for what this means in the short and long term.

Dr. O came by this evening and he and i are both in agreement that Alex is not ready to have anything in through his Jtube yet. He has some bowel sounds, but they are not his normal and he has dark bile draining out of his gtube. We both know it is better not to push Alex’s body before he is ready or it will backfire and set us back further.

Last night and this morning left us seeing respiratory numbers we have never seen and are considered scary levels by doctors and nurses. Luckily, Alex stayed pretty stable from about lunch time on. He started on crazy high levels of oxygen with the non-rebreather mask whoever we would try to switch to a normal mask he would struggle again. Around lunch time they had us give 2 additional doses of a diuretic because sometimes with a Transfusion Reaction you can hold on to too much fluid. He peed off over 2 Liters this afternoon and is currently stable on 4 liters of oxygen through a nasal cannula. this is a HUGE improvement. we are hopeful he can stay at safe levels through the night and not need to go back to the mask. (4 Liters is the max you can give through a nasal cannula)

Alex is feeling less scared now that things have stabilized some. We still have some hurdles, but at least we are moving in the right direction.

Thank you for your continued prayers and support.
Ali