Wednesday, September 29, 2010

Long and skinny with a chest full of scars

Today was a good day. Caleb's x-rays looked good this morning and everyone believes his intestines are fine. They will probably not x-ray them again unless something else shows up.

The nurse was going to give Caleb his bath this morning and asked if I wanted to help. Of course I was not going to pass up the opportunity to see my perfect little boy naked (you never really get to see the entire baby here, just pieces and parts) and do a regular mom job.

Before his bath, his NG tube was removed to give his nose a break. The tube was no longer needed because they didn't need to remove all the contents of his stomach. This was a good thing because the tape holding the tube on his face was irritating his skin. Tape irritation seems to be a common thing with Caleb.

I got to remove the leads on his chest and his oxygen saturation sensor, so when he had his bath, he only had his nasal cannula and the IV lines in his legs. After his bath, I got to hold a clean, fresh smelling little boy with only a few lines. It was absolutely wonderful!

After all the excitement of his bath, Caleb and I snuggled and he fell asleep. It seems that Caleb has his days and nights kind of mixed up. He is very fussy for the nurses at night, but is pretty calm (usually asleep) for me during the days. Today I made an effort to keep him awake so we can see if he is just spoiled by his mom or if something is wrong at night. This afternoon, he was awake, calm and alert for about two hours straight. We talked and hung out. Hopefully, we got him tired enough to sleep tonight, but not so tired that he had to work too hard. Like everything else with Caleb, sleeping and being awake is a balancing act.

Being in Moderate Care is an eye-opening experience. In the PCTU, nearly all of the kids had a heart defect where surgery was necessary, but would provide a decent quality of life after recovery. In Moderate Care, you see a lot of kids with serious defects that surgery cannot fix. I have met parents that had to decide if open heart surgery would improve the quality of life for a child that was not expected to live into her teens. We are in the fortunate position that if the surgeries go well, Caleb can live a good quality life. The obstacles that we are facing are much easier than what other people here are dealing with. While we still have a way to go, we are counting our blessings and very thankful for our wonderful family!