Dear Son Update

Dear Son continues to improve every day. His oxygen saturations have increased to a normal range during the day. They are at 96-97, which is good. At night, he continues to make some progress. The saturations are not nearly as good but are improving. He has been able to sleep the entire night in his bed for the last three nights so that is good. Prior to that, I'd have to get him up after lying down for four hours. He certainly does better sitting up in the recliner however it's hard to have him sitting up for so long.

His feet continue to swell. In particular, his left foot and ankle are quite swollen as well as cold. I am keeping it warm and massaging it however there is quite a bit of fluid. I can't elevate it because when I elevate the foot rest of the recliner, the chair reclines him somewhat and he cries. His lungs seem to hurt in that position.

He seems quite fussy lately and something is clearly causing him some pain, but I can't figure out just what. I've asked the doctors why he would be in pain and they don't know. He was crying out a lot yesterday that I finally gave him some Tylenol. We see the pulmonary doctor on Tuesday.

I am continuing his nebulizer and chest pt treatments. I am doing around five treatments a day yet. He seems more congested at night and smiles whenever I do chest pt. That is the only time he seems happy. I turned him over last night around 4:40 a.m. and since he was sounding quite rattled, did the chest pt. It seems to help.

I am up a lot at night and getting extremely tired. I did the nebulizer and chest pt around midnight last night and finished up around 12:30 a.m. Around 1:35 a.m., I was up to change his diaper and then I turned him on his other side, which he can't tolerate for long periods. At 3:30 a.m. I was up turning him back over on the other side and at 4:40 a.m., I changed another diaper then did chest pt for 10 minutes and then the nebulizer for 25 minutes. He fell back asleep after that and then fussed a bit more this morning.

The 24 hour a day continuous feeds are wearing on me a bit. I've never been a fan of them since when they feed 24 hours a day, it means I am up at night changing diapers. I am changing bowel movements between 12-1 a.m. and the first thing every morning, around 4-5 a.m. I will be glad when we get back to a more normal schedule. The doctor has him on continuous feeds since there is less risk of aspiration. It will be fine for a few more weeks but I'll be glad when we can wean it back a little bit; even feeding 18 hours a day will be preferable to 24. That way, I am not up all night changing diapers.

Tomorrow he'll go out of the house for the first time since we've been home. He has some lab work tomorrow and then an appointment on Tuesday. I hope he can handle that and that we don't back track at all.

I managed to get our tree up on Thursday and finally got the lights and decorations put on the tree yesterday. I've just been so tired from being up so much that I am not very motivated when it comes to Christmas. One thing that is problematic is that normally I send out a photo Christmas card with Dear Son's photo on it. This year, I couldn't take it in November and he's not really himself right now, so I can't get a good shot. While I could use one from earlier this year, it doesn't feel quite right. The Dear Son in those photos seems a long way off from where we are now. I have to make a decision soon or I won't be able to get them printed in time. I really enjoy the photo cards since it's a nice memory of how he looked each year.