A little over 3 weeks ago Sebastian came down with a cough. Tallula had just gotten over her own cough after three weeks. Then came the chest congestion for Sebastian and because of his low tone, he cannot cough out phlegm like Tallula can. So it sort of rattles there and sounds absolutely awful and frightening. I took him to the doctor a few days into it and they said it was a virus, likely what his sister had had, and that we’d just have to work through it. He felt up to going to school and wasn’t contagious, so I sent him in and went to pick him up early each day, gradually arriving later so he wouldn’t miss the fun stuff like music class which is at the end of the day sometimes. Leading up to the holidays there was mostly just a lot of holiday ‘stuff’ so he wasn’t falling behind.
After a week of little improvement, added wheezing and vomtting up his breakfast, after gagging and not eating much at all, I took him back to the doctor. His usual paediatrician wasn’t in so we saw one of the other doctors in the practice that we see occasionally. She wasn’t phased about the vomitting and still didn’t want to do a chest x-Ray to rule out pneumonia. She told us if he got worse or dehydrated to head to the hospital where they could do a proper x-Ray. I then asked if he was contagious as I wanted to stop by his school to pick up his walker et al before the long two week holiday. She gruffly snapped, ‘You can do whatever you want with him.’ I was taken aback and wanted to explain but quickly realized she wasn’t worth my time or energy. I wanted to tell her that he goes to a school where getting sick is just as dangerous for other kiddos there as it is for him. I wanted to tell her that we have (respite) care givers coming over to spend time with him and I want to make sure they stay healthy too. I wanted to tell her that I expect others to keep their sick kids home so that my immuno-comprised kid can stay healthy. But I didn’t because my energy is sometimes better placed towards taking care of my kids rather than educating the ignorant. While I expect more from health care staff, it’s not always a reality.
The next day Sebastian was able to eat half of what he normally eats and tolerate his Gtube feed. Yesterday he wasn’t able to do either. He was unable to keep any food or ‘milk’ down. He couldn’t eat by mouth or Gtube. Thankful he tolerated pedialite via tube but wasn’t able to drink it. He vomitted anything else we gave him but he wasn’t wretching otherwise. And he was dehydrated. I have him Gravol before bed so he could tolerate his seizure medication as he’d mostly vomitted it during the day. Tallula woke with a pink eye and a new cough the same day (yesterday)! Neither had been out, both having missed their holiday parties and song presentations on the Friday. Thankfully we were able to do our own version for Daddy and M, who had stopped by after work Friday too. Tallula sang Jingle Bells and we sang the Twelve Days of Christmas with Sebastian as he’d programmed the 2nd day for his school performance into his switch.
I don’t know what germs have plagued my children or where they came from, though likely the doctors office which – as usual – was a waste of our time. I’m tired of going to pediatricians that really don’t know how to treat my son because he’s probably the only one on their list with significant disabilities. I’m tired of them not having any solutions or insight and realise once again that I do know more about how to care for my son than they do.
Every year around this time Sebastian gets very sick. Sometimes it happens the last week or two before the school holiday and sometimes it happens after we arrive in Michigan. This year we decided not to travel to Michigan for a few reasons, mainly because we didn’t want him to get sick. Sebastian had pneumonia when he was two years old after we had travelled from Cairo to Michigan. I’m paranoid about it returning every year. When he was two he wasn’t coughing, he was vomitting. It’s really unfortunate that I have to take him to a hospital to confirm whether he does in fact have pneumonia or not because the pediatricians office can’t do it.
I know Tallula will rally but I’ve also got to take her to a different doctors’s office to find out what she has and then pray Sebastian doesn’t pick up this virus too.
Photos from Thursday afternoon. Warm enough to do our final clean up of the back garden. Happy to get both kids out into the fresh air. Seb doesn’t have that opportunity much at his new school. But that’s a post for another time. I should be sleeping!