The first is from all his aspirating and refluxing and hypotonia and malacia. He has very low tone in his airway and it was swollen and damaged from the aspirating and refluxing. That is the big reason for the atelectasis and why he retracts when he breathes. The good news in all of that is that the damage should heal and as his tone improves and the malacia goes away his breathing should become normal. This can take a few years though and in the meantime the doctor says that in order to prevent any further damage or any chance of him being left with chronic lung disease from untreated atelectasis (which can progress into more harmful conditions) she wants to be aggressive in treating him. So he is on breathing treatments 4 times a day with a mix of 3 different meds. I need to do CPT (back patting) after every treatment and I also need to suction out the back of his throat at least once a day. Home health is coming tomorrow to deliver a nebulizer and a yonquer (nose sucker). 2 more pieces of medical equipment for TICU! I have to find out if they have something smaller than a pediatric mask because as you can see this one is way to big on him. It is either up around his eyeballs or he is trying to chew on the sides. Anyhow, all of that should reduce the swelling in his airway and ease things up for him a bit. It will be so nice not to have to see him work so hard.
The second is the sleeping issue. His doctor is ordering the sleep study, until then he remains on the oxygen at night and she'll adjust as necessary afterwards. I really hope the sleep place can get him in soon. It is exhausting hearing those monitors all night long. Once he has a proper diagnosis and his doctor can adjust his treatment he should not desat (lose oxygen) so often, and the night should get a whole lot quieter.
He has been taken off of any oral feeds until he gets a swallow test done. He was doing great with the bananas but after a few days he started sounding wet. So I actually had stopped feeding him two days before he saw the doctor. She said the last thing we want to do is feed him at the expense of his lungs. Couldn't agree more. My mommy sense is telling me he is still aspirating, but we will find out for sure during the study. If that is the case, between the aspiration and the pending hernia surgery (sometime in the next year or so) it could be 1-2 years before he can take oral feeds. It is ironic to me that 4 months ago my biggest priority was getting him back on oral feeds, and now it is such a non-issue.
Now I deal with stuff like the pulmonologist saying to me as she's leaving "Oh, by the way how often do they check his platelets? Don't pat on him too hard just in case." Yeah, ok - way to strike fear into the heart of a mom! IF his platelets are low and IF I pat too hard I can cause internal bleeding - no pressure.
Early Intervention was out at the house today and I enrolled Tomas for physical therapy, speech therapy, and nutritional services. They come out to the house so it is very nice. His PT today told me that the average Down Syndrome child walks at around 22 months, but based on her assessment she thinks it will take Tomas longer. I am not surprised because he has rubber chicken legs. She was very re-assuring though. Down's kids DO walk, DO run, DO jump, play sports, etc... It just takes longer. I know he'll do it when he can, but I am using this professional opinion to help me justify the cost of a new stroller to Mike. "But honey, just think of how long he'll be in it. And remember that even when he does walk he's going to tire easy!" I think I'm in.
We went in the pool the other day and he liked exploring the water. I think we had more fun watching him though. His favorite thing to do is grab that monkey off of his toy bar. The other day he turned a page on a board book and at first we thought it was an accident. But the next day he did it again and again. The girls cheered and shouted like he had just won a gold medal. It was so uplifting to see them take such pleasure in his accomplishments.