Sunday, April 25, 2010

May 12, 2001 Day 43

Today Jairus was on the annual Mother's Day Telethon that Mac has been doing for years. I remember singing on it with my choir many years ago. They do features on all sorts of kids that are in the Children's Hospital, and this year they wanted to "interview" Jairus. I so wish I had a digital version so I could post it here! (I'll have to see if James can do something about that....)

We were nervous that he would get upset and I would have to try to calm him down on TV, but he was perfect: cute, wiggling, bubbling and a little cooing.

Another big event this week was a breathing trial. I had decided that I wanted to have my son at church with me on my first Mother's Day. At first the pediatric doctor was hesitant, but when she realized that it was Mother's Day, she set her mind to making it happen. She set the terms: Jairus had to go one hour without a breathing tube until she'd be comfortable letting him go out for the morning.
Rico the nurse came while Jairus was sleeping and slipped his tube out. A few minutes later when the doctor came, she was impressed at how well he was doing. I spent the next half an hour praying.
Then the doctor sent word that I should feed Jairus. Yikes! I had been scared to try while he was without a breathing tube. But all went well. Sometimes he would squirm about and then his sats would drop, but if I shifted his position, they'd usually pick back up. In total, Jairus went not just one hour, not two, but three hours without a tube that day!! I was thrilled. That Sunday, I was a mommy for all the world to see....

Not that it went off without a hitch.

We got to the hospital just past 9am that morning and not one minute later, Jairus started throwing up. I could see that he had thrown up earlier but no one had been in to clean it up. He threw up about 3 times and probably lost his whole feed. James was concerned, having not really seen Jairus throw up. I was concerned because now I had to clean him all up plus a number of other things and get to the church for an hour later.
We manage to get him ready to go and into his carseat and away we went with me in the back seat (something I swore I'd never do....but I told myself this was different :-)

Everyone was so excited when we got there--we were pretty much surrounded the entire morning. Jairus was really good during the service; I left him in his seat for stability for most of the time, although I was dying to hold him and show him off. We left the service part way through to do a tube feed--even then, we had a crowd around watching. Everything went fairly well though and we headed back to the hospital, happy to have had our first 'normal' morning at church.
Over the next 10 days, we took Jairus out 3 more times. I remember one visit realizing that the nurse had sent me home with the wrong feeding tube-it didn't fit the port on his ng-tube. Fortunately my mom had a 10ml syringe in the house so I painstakingly filled it over and over to get Jairus' feed down.
The visits were great for my confidence, but awful for my emotions. One evening after having Jairus home for most of the day, I walked back into the bedroom to see the empty little baby bed and his sleeper on my bed....sad times.
We were still trying to feed Jairus by mouth, but the most he could manage would be 15mls....and it took 1/2 an hour for him to get that down. It was progress though, and we were happy to see it.

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