Day to day...hour by hour at times...coasting....waiting....I feel like we are truly living day to day...Kyle has been so up and down that I'm finding it hard to keep up. He is still on the IV steroids and we are concerned that this might be the best we can get his lungs until surgery. He's getting tired very easily and complaining of his "breathes" as he calls it. His color hasn't been great and he is back on O2 more....which he is ok with...(this is both good and bad) Still on the 20 hour tpn...which he also has been pretty good about. His blood sugars have been to high which is a concern and we are hoping they will get better after he's off the steroids.
It looks like surgery the second week of May, it's a compromise between his GI dr and pulmonary dr...GI wants the surgery now, while pulmonary is more cautious with his lungs. At this point I'm not sure how I feel, so many emotions about this surgery...my brain is having a hard time processing it. I don't know how to prepare him for this, he's 5, he's smart and this will test his limits...I think it will test all our limits.
Jack and Alex are good, so patient.... Gosh I wonder what I would do without them...