MORE STABLE BUT STILL VERY FRAGILE

Max's fever has subsided thankfully. It started to slowly drop through the night but then spiked again. He has been heavily sedated which seems to be helping his respiratory rate and comfort level. However, his blood pressure is very erratic which is confusing everyone.

The initial test was negative for respiratory infection (which is a huge relief) and we are still waiting on results from the others because it takes 24 - 48 hours for the cultures to grow.

They attemped to slightly wean him off the ventilator this morning, however, he immediately dropped his oxygen to very low levels. It was a very scary moment. The doctors are stumped and are debating whether it is his heart causing these episodes. We just met with the pulmonologist, who I trust very much, and he is inclined to encourage cardiology to quickly move forward the heart surgery. Nobody wants to do the surgery at this point because of his size and weakness, however they believe he will continue these episodes until something is fixed. After the heart surgery, we will decide about the tracheostomy. The pulmonologist thinks that is likely what Max will need. Cardiology is coming by today and we are having a care conference on Friday to discuss the plan.

Right now the plan is to stabilize Maxwell. They are HOPING they can wean him off the vent within the day. It is completely heartwreching to see Max like this...it feels like we are back three months ago. He has IVs coming out of nearly every part of his body, he is completed "snowed" on sedation and he has massive bruises on all over his beautiful body due to all the failed IV attempts.

Fortunately, my sister Elizabeth (and lil' Tom Tom) was able to run down here last night and be with me through all of this. She and her husband have done a wonderful job supporting me during this very lonely journey, and I am eternally grateful. It's crazy to have all of this pressure and responsibility on my shoulders alone. While I think I have a very good sense of all that is going on, it is very, very helpful to have someone else be involved in the discussions and be here to support me and Max.

Thank you too for all of you who have sent loving, encouraging emails and calls...very appreciated. The next few days the doctors and I must make some very important decisions and your prayers are much needed.