Tuesday, March 31, 2009

Last Synagis of the season

Today Rhys had his last synagis shot of the season. Woohoo! One of these days we will cease to have multiple weekly doctor's appointments. Tomorrow is PT and Thursday is a new speech therapy at the hospital. I am hoping the ST will figure out a way to get Rhys to eat better and get him on track with the spoon feeding. Actually, he has been eating great for the last few weeks, but he hasn't gained (or lost) any weight since his surgery. Beyond annoying! He has definitely gotten longer though. Cody and I both can tell in how his pants fits and how far his legs hang down when he's in his swing or bouncer.

He is doing really well with telling us when he's hungry, and he acts hungry, but our problem is that the Y-cut nipples make him lazy. If we made his milk as thick as he likes it he can't get it out of the nipple because the hole is too small and he gets tired of eating before he has finished his bottle. If we make the milk thinner he gets lazy and doesn't suck properly and still doesn't eat enough. He eats the best when the Y-cut nipples are slightly "ripped and torn" where the hole is a little larger than it's supposed to be. But, that hole continues to get bigger so we eventually have to replace them and start from square one. Why is this so complicated??? We are also having a dietitian come out this weekend so hopefully she can give me some more ideas on how to pack in the calories. The cereal, powder formula and fruit obviously isn't doing it anymore.

We stopped by the NICU today before going to see the pedi and saw one of Rhys' primary nurses and doctor. This was one of the doctors we loved who did so much for Rhys. He said he looks amazing, said he had great head control and said Rhys' increased oxygen requirement after his surgery is "not bad at all" considering his history. That made me feel better. Since his surgery Rhys has needed .5 - .75 liters of O2, as compared to his .25 prior to surgery. I had been worried about it, even though we knew it would probably happen. I guess I wasn't expecting it to last this long. Once the hernias were repaired that pushed the intestines back into his chest cavity which increased the pressure on his diaphragm and gives his lungs less room to expand, thus he needs more oxygen to compensate for all these things given his chronic lung disease. We are three weeks post surgery and when we spot check his pulseox (we don't keep it on him all day since he went three months without one) he is showing no signs of allowing his oxygen to be bumped back down. What a bummer! I keep reminding myself that it could be so much worse.

Oh, you might have noticed that Cody added Twitter to the right hand side of the blog. I am not sure I am important enough to need Twitter, but regardless we now have it!


Jamie said...

We had the same problem with our Y-cut nipples. They would eventually get too torn and wide and we'd have to replace them. It was always hard for them to get used to the new ones.

Brian said...

Good to see R-crimes is doing so well. Look forward to seeing him once BOTH our boys are sick-free at the same time.

(the word verification for this post was "eprom." curiously enough, that is the acronym for an old type of memory that I was responsible for purchasing at my first employer, Fujitsu. strange.)