I do not know where the time is going, these last years have just been flying by, feels like Christmas time was just yesterday, well maybe last week, but here we are into April already.... I am still having a hard time believing my baby, my firstborn will be turning 11 years old very soon!!!!
Sebastian is doing ok. He is staying awake more, more alert and seeming to be a bit happier
His hip infection seems to be under control and he seems fairly comfortable when we lift or move him. Today he had an MRI and is quite pale, his hemoglobin is low, but that is usual. We are still working on how to feed him, so he is still on TPN and hoping to start actually feeding him into his gut very soon. What is really seems he needs is a permanent j tube placed, they have now done 5 gj's but they keep migrating back into the stomach - which isn't working. There are some pretty bad complications which could possible occur from the j-tube, and the surgeon is not wanting to do this - I wonder if he is coming from a perspective of do no harm. We also were very concerned about this tube, but after his primary pediatrician (whom is a Saint I believe and has cared for Sebastian for his entire life) and other doctors whom know Sebastian well feeling this is what needs to be done we also agree.
All in all he is doing very well and now we just need to find a way to feed him - long term through an IV into his central line is not possible.