Sorry for not writing sooner, I've just been exhausted lately. Aidan had an appointment last Thursday with the surgeons who did his trach and g-tube. It was just a follow-up visit, but we ended up going down to radiology to have a reflux test done. We found out pretty quickly that Aidan has reflux. He had been spitting up more and more and had been vomiting pretty regularly after his feedings. The surgeon had us decrease his feedings to 90ml every 2 hours until I could come in today to meet with him and the nutritionist to discuss other options.
Let's just say it isn't exactly convenient to feed him every 2 hours, not when he has to have therapies and meds worked into that schedule as well.
We had a pretty good weekend. I don't remember a whole lot of it to be honest. Like I said, I'm exhausted. I took Aidan to his hyperbaric session on Saturday. It was my first time in the hard chamber with him. It was okay. Aidan was pretty calm throughout most of the time. Toward the end he started to get upset, mainly because he was hungry and wet. He was looking around a lot more and at one point he looked at me and I just felt like he knew who I was because he could actually "see" me. Then he started moving his mouth like he was trying to make a sound, maybe not a word, but a sound. It wasn't like he usually does when he "chews." I didn't cover his trach because I didn't want to upset him, but I wish that I had to see if he was actually trying to make some sounds. I got Aidan loaded in the car just in time for a storm to just dump on us. It was an interesting hour drive home.
Yesterday (Monday) was Aidan SPECT scan and Russell's first day on the job. I had to take Russell to work and then get Aidan to the hospital and get him checked in. We were about 30 minutes late because of traffic. They got him settled in and got him under anesthesia and after about an hour the nuclear med tech came out to get me. I thought they might be done already, but she apparently neeeded me to "wake Aidan up." I got worried because she said they had brought him back out of the anesthesia and needed him to open his eyes before she could inject a contrast. So I spent 30 minutes trying to get him to open his eyes. Finally, he opened his eyes and I was able to go back out and let them finish. They ended up having to scan him again because they needed to get better images. So instead of him being back there for about an hour and a half he was back there for about 4 hours total. We finally got to leave around 1:40 yesterday afternoon.
Today was the ENT consult to get the PMV. That was a complete waste of time. The pulmonologist's office made the appointment for us. And being that they aren't familiar with doctors affiliated with NorthEast, they sent us to a regular ENT, not one that specializes in pediatrics. I asked them when they called to tell me about the appointment if they were sure this is where they wanted me to go. I thought they were going to make the appointment with Dr. D who is a pretty well known pediatric ENT who was actually supposed to do Aidan's tracheostomy, but couldn't coordinate his schedule with the other surgeon's. Anyway, the ENT we saw today wrote me a prescription for the PMV's but is referring us over to Dr. D to manange Aidan's trach and PMV schedule.
After that, I went to meet with the nutritionist and the surgeon. The surgeon wasn't able to talk with me then (he's supposed to call later). The nutritionist and I discussed 2 options to dealing with Aidan's feedings. 1: we feed him 4 times a day with a pump at night to make up the feedings or 2: we feed him 6 times a day and add something to his formula that gives it more calories with less volume, it's called Benecalorie. I'm trying it in the rest of his feedings today to see how he tolerates it, otherwise we're looking at the pump overnight.
So that's your update for the past week while I was being slack.
I'd like to mention a new fundraiser going on. It's a raffle for a birdfeeder and a birdhouse. These are one of a kind, pottery donated to us by Betty Owen. Betty is one of our nurses step-mother. She really is an artist and the bird house and feeder are really pretty. We're selling the tickets for $1 each or 6 for $5. There will be a drawing for each item so you will have two chances to win. If anyone is interested in buying tickets just email me and I'll get the information to you. I will post pictures in another posting so you can see them.
Thanks everyone for your prayers and support!