Today we met with a nurse practitioner and a doctor in the G-tube clinic at Sick Kids Hospital in Toronto. Definitely a worthwhile trip, it was extremely informative and really helped us to get down off the fence and make a decision.
Jason and I have decided that at this time a G-tube would essentially be trading one aspect of Joey's quality of life for another. We honestly thought that G-tube feeding would be easier and faster than what we deal with now. The nurse practitioner and the doctor were both amazing, and they described everything involved from start to finish. Each feeding would require Joey to be kept still and quiet for about 40 minutes to feed him one can (237 ml) of Pediasure. That would likely involve keeping him strapped in a chair for that length of time, at a minimum of 2-3x/day in order to increase his caloric intake from what he currently consumes. 1.5 hours strapped in a chair per day? I think not! The other option was overnight feeds, which would be tricky because of how active Joey is, and would also involve monitoring throughout the night, you can't just hook himup and go to bed. Fiddling with the tube,pump etc. after he falls asleep would disturb his sleep, not to mention ours. One of the most amazing things about this kid is his very solid, regular sleep pattern. Since 15 months old Joey has slept through the night, usually 10 hours, without waking. Do we really want to mess with that?
So after much consideration and discussion we have decided to put off the G-tube...for now. Right now Joey is eating very well, unlike 2 months ago. Things may change, and they now have a file on us and we can change our minds at any time. The doctor was very much in agreement with our decision. He told us that many of the kids that come through their clinic are just black or white in regards to making this decision, and he agrees that Joey is in a grey area. We did talk about a less invasive alternative, which is appetite stimulants. He seemed to know a lot about these medications and will consult with our pediatrican about it further. We may be able to try this the next time Joey's feeding takes a turn for the worst, and maybe it will get him back on track more quickly.
So right now I'm in the hotel Starbucks while Joey and Jason take a little nap. We're staying at the Hyatt downtown Toronto, which is lovely and has just been renovated. We have a great view of the CN Tower from our room on the 15th floor and tonight we're going to be tourists and take Joey up to the top of the tower. Mount Sinai and Sick Kids is about a 25 minute walk from the hotel and the weather is gorgeous, not too hot and not too cold. It's turned out to be a great day, we're really happy we decided to stay in town for the night.
Tomorrow morning at 8:30am is my level 2 ultrasound. I'm hoping that the doctor won't find any trace of the cyst and that we find out if this is a boy or a girl! Right now the baby is hiccuping up a storm, just like his/her older brother did when I was this far along, which is why I'm here typing instead of napping with the family.
Wish us luck tomorrow!
- p, J & J
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