Jameson has done fairly we over the past day. The left chest tube that hasn't drained in weeks was taken out this morning. They will continue to monitor the effusion with morning chest xrays and can put a new one in at any time if it is needed. His belly is still large and full of fluid. We keep hoping the sirolimus will be our wonder drug and dry him up but so far we haven't seen a noticable impact. He will be on a vent for a long time barring a miracle so the plan will be to get a trach as soon as he is stable enough for surgery. Hopefully early next week. Even with the trach he will still need heavy sedation for quite some time due to the fluid build up in his body.
been held for a few days and he has improved. No more fever, improved
kidney function, improved lung function. But he has to get started back
on it. Interferon is really the only maintenence, long term drug known
to help out with lymphangiomatosis. Hopefully when he starts back on it
his lungs will not diminish and after a few days his body will learn how
to tolerate and manage the drug.
Today is a "boring" day. No
tests to run, no exciting news, no field trips to the OR. Jameson
remains in critical condition. Just this morning I read some notes from a
Dr stating that he will remain critically ill. Ugghh. Even though I
know he is super sick and progress has stalled out, seeing it in writing
just stings. And stinks. I sit and wait and pray for healing. Thank you
all for your continued love and support and prayers. We are so grateful