I'll start with the biggest news. After our appointment at Sick Kids (with the team who is in charge of looking after Ryan's lungs, we've turned his oxygen down to half the amount during the day and 3/4 of the amount at night. (He was on 1 liter per minute, now during the day he's on 500 cc per minute, and over night he's on 750cc.) The weaning process is a careful one, and we have to monitor him closely for signs that he is working too hard. It's important to keep him growing so he can have lots of extra energy for the extra work he'll be doing. He was definitely ready for the wean , but it is still worrisome because I always have the fear of setbacks in the back of my mind. In true roller coaster fashion, with every up there's a down... last night I started to feel the dreaded tickle in the back of my throat - this is NOT the time for me to get sick - I just want this little dude to be successful - if I get sick it's pretty much guaranteed he will get sick. When Scott had it, at least he was out of the house most of the time working, and when he was home he wore a mask and was relegated to the basement. Nearly impossible for mom to do that. I'm currently listening to Ryan cough and sneeze... perhaps it's too late. Maybe my 'tickle' came from him.
On another note, the Respirologist was very impressed that Ryan has only had the one cold (although it was 8 weeks long), he gave me a pat on the back for being so careful. I'm glad OUR efforts paid off, but some of the bugs are just unavoidable.
I was messaging with a friend who has a little girl Sadie's age who had leukemia (I won't go into details because of privacy) but the bottom line is that we have basically been protecting Sadie the same way they protect their little girl. They are slowly letting her back into society with the same fear of germs we have, but since her treatments are going to continue into 2014, they feel they have to let her 'live' a little. I'm getting to that point with Sadie too. She's missing out on a lot of important kid things. I know it's a worthwhile sacrifice, so I'm more inclined to wait a bit until the height of cold and flu season is over. She still laughs, dances, and plays all day everyday, so really the only thing missing is the social stuff with other kids... there'll be plenty of that in the years to come.
On Friday, we are going to a fairly 'big deal' appointment - it is Ryan's first Complex Care clinic. Sick Kids is now offering satellite clinics so that people in 'outlying' areas are able to have access to the resources Sick Kids has to offer, without having to travel to the city. Our appointment is the first one one the first day of the clinic, exciting stuff! It truly is exciting because the idea of the clinic is to 'streamline' everything so that this team is in charge of Ryan's care, and they work with our support workers, therapists, etc. as well as coordinate consults and appointments when we do have to go to sick kids. I have high hopes for this clinic. My list of notes and questions is very long. I'm going to keep it by my bed for times when things pop into my head. They asked me to come to our appointment a bit early because there will be some 'media' coverage... hmmm...
Here's a list of specialists and upcoming consults:
- Pediatrician
- Pediatrician @ a diet clinic, North York General
- physiotherapist, home
- early interventionist, home
- speech/language pathologist (for feeding and swallowing, home
- Chest clinic @ sick kids (oxygen people)
- Eye exams (Southlake)
- RSV vaccinations monthly, Southlahe
- General surgery consult (sick kids for hernia)
- Ear, nose, and throat consult, Sick Kids (for hearing)
- Gastro-intestinal clinic, Sick Kids for g-tube
- Neonatal follow-up @ Sinai every 4 months
- Auditory/Visual therapy (potentially @ Markham Stouffville hosp, but I'm hoping for something thru Sick Kids
- Complex Care Clinic
- occupational therapy (probably)
- We've also seen an osteopath
In a somewhat unrealated story, I've been on kijiji looking at double strollers (I've gotten it into my head that I want to get out walking with the kids and there's a stroller a friend has that will fit a toddler up to 50 lbs as well as a baby, and it will push through snow!!). It is really bugging me how cheap people are. The stroller I have in mind retails for $850 (obviously out of the question to get it new). There are lots listed, but people still want ridiculous amounts for them - even if they are 3 to 4 years old- with replacement parts!). My thoughts on used stuff is that you'd be lucky to get half back of what you paid, but folks are firm on prices of 500-650. I guess 500 isn't terrible, because in a couple of years we can sell it and get a bit back. Anyway, that's my rant for the day.
Luckily we have help today so my contact with Ryan will be minimal (sad) until I can figure out if it will be a cold or not,
No comments:
Post a Comment