Ryan had a paediatrician appointment in Richmond Hill today and since our nanny lives down there she was meeting me at the office. On my way there (at a red light) I got a message that Sadie needed to be picked up from her friends house. I waited until I got to the parking lot before calling my mom to ask her to go pick her up. Suddenly I was out of the car with the doors closed, with my keys, and Ryan locked inside. OH F.... Thank goodness I was on my phone (although the blunder may not have happened if I wasn't). Martine ran inside to tell them we were there, and we'd be coming up - eventually. I called Scott who I'm assuming dropped everything and headed down (a 30 minute drive). Meanwhile, Ryan was doing great, I could see his oxygen monitor and we were watching him just chilling (no pun intended) in his carseat (which is rare when the car is not moving). A mom who was in the pedia's office came out and said that this happened to her and she ended up calling 911 because the fire dept was right next door and they were there in 2 mins. After a short mental debate, I did it. Scott was about 15 mins out, so I went for it. Medically fragile baby, on oxygen, freezing cold day... urgent enough. Sirens rang out within a minute, and there they were. They were very nice, afterall a mom in this situation does not need to be reminded of anything, we'll scold ourselves more than anyone ever could. Ry was fine, we thanked the firemen, and off to our appointment we went. No wonder I have a headache tonight.
Here's another brief update:
- We spent a week at Southlake hospital because Ryan's cold finally got the better of him (and us) he had a terrible cough and his oxygen saturation started to drop on the Sunday night. They were great at the hospital and let us stay until we started to see a noticeable improvement.
- He's back on his regular oxygen level and is starting to be able to eat a little better
- Still a long way to go on the eating side of things- we're seeing a specialist, and he'll probably end up with a g-tube ( a tube that goes right into his belly and is permanent until he doesn't need it anymore)
- Reflux is still a battle we can't win
- I've booked us into an osteopath... am going into it being slightly skeptical, but a friend I met in the hospital takes her boy who is a lot like Ryan and has seen some success... why not?
- He has gained weight. too much weight. Now they (the dietitians) want to drop his volume of fluid and add in protein powder to help his length
- I struggle with following all of their 'rules' because a lot of it goes against what my instinct is telling me. I have to trust them because the bottom line is that they know what is best for his lungs and if we protect the lungs, we give him the best chance
- I want to have Christmas right now because we are at a good place on this roller coaster. I fear what the next 3-4 weeks will bring. Everyone tells me to focus on the positive, but I still struggle with that because the last month was so low.
- Sadie continues to delight, surprise, and amaze
- Now that Ryan has turned the corner and has 'recovered' from the worst of his cold, he is more alert, he even started 'cooing' (the first 'happy' sign we've seen from him in a LONG time)
- We now have nursing help 3 nights per week (tonight being one of the nights which is why I'm on the computer and its past my bedtime). She starts at 11, and I'm 'on' to let her in and get her set up for the night. 3 out of 7 is great but if and when the next cold comes, we'll have to ask for some more. I think part of our issue with 'coping' came from pure exhaustion.
- We continue to be grateful for those who have helped us out lately... we're lucky to have some really great folks in our lives
Farewell November, you won't be missed.
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