Reagan and I just returned from an unplanned 5 day vacation at Texas Children's Hospital in Houston. Those unexpected vacations where you leave town with only the clothes on your back are always the most fun and exciting, right?!?
Here's how it all went down: Reagan and I (leaving Lauren with a babysitter) left around 5am on Wednesday morning to drive to Houston for her semi-annual follow up with her Rett Syndrome physicians in Houston. The team includes her neurologist and gastro-intestinal physician. I was expecting it to be a long and busy day but had no idea what was really in store for us. The neurologist visit went smoothly with the only surprise being his request to send us upstairs to x-ray for an EKG to make sure she does not have a long QT in her heart rhythm. He wants to check annually going forward so no big deal.
Next on the agenda is her GI doctor where I was already expecting a stern lecture because of her lack of weight gain. Her weight check showed that she was 27 pounds, which is down a pound from her last weight check in December. I thought, what is a pound? Apparently a pound is a lot, especially when you grow 3 inches in 6 months, because it throws your BMI (body mass index) out of whack because it is just a ratio of your height and weight. Her BMI in December was 13.5 (The Dr. prefers around 15) and last week it was barely 12, which puts her in the less than 5% range when compared to other children her age. I was spared the lecture and instead told that a nasogastric (NG) tube immediately was a necessity. And she wasn't kidding. She advised that we stay that day and be admitted to the hospital to have the tube inserted in her nose and then observed for 4 days to ensure her body did not reject all the nutrients she was getting from the formula.
There were a lot of emotions and thoughts involved in the decision to stay but in the end the decision was easy, it was what Reagan needed to be healthy. After waiting for 6 hours, we were finally given a room at 7pm. Reagan was exhausted from a very long day so she went to sleep not long afterwards. It was the best thing because she barely even noticed the nurse inserting the tube down her nose at 10pm. She has tolerated the tube and feedings very well and has already gained 2 pounds! I am so amazed at what a trooper she was throughout the entire ordeal, letting them constantly take blood and do check-ups.
We were released around noon on Sunday and we were both ready to see our family and home. Today is the first day of setting up her tube feedings on my own and so far it is going smoothly. She will have the NG tube for the next 4 weeks in hopes of getting her weight up as much as possible (preferably to about 35 pounds) and then we'll remove it and decide from their if we want to move forward with a permanent feeding solution, like the g-tube.
A big thank you to my Mom for flying to Houston to help me! It allowed Wes to stay home with Lauren and take care of her and me to focus all of my attention on making sure Reagan was getting the best care possible.
Abby's first visit to Boston for the IGF-1 Trial
3 years ago