Tube Swap

Well it looks like Jill will be back in the hospital tomorrow. We had a follow-up appointment with the surgeon today, and he told us that the feeding tube that she currently has will need to be switched out with what is called a “button.” It is basically another feeding tube that should be more permanent. Originally, we were under the impression that her current feeding tube would be switched out to the button feeding tube in 3 months, but I guess we were both mistaken. So much to our surprise, this whole procedure of switching the feeding tubes needs to happen much faster and they put us on the schedule for tomorrow. I’m a little overwhelmed at the idea of being back at the hospital so soon.
We have to check in at 11:15am and the procedure should start at 1:15pm. She’ll be given some anesthesia. The surgeon will put a scope down her throat. Then he has to puncture a balloon-like mechanism that holds the current feeding tube in place. Anyway, the whole thing should take about an hour. I’m just hoping everything goes smoothly. I know it is somewhat of a routine procedure, but it is hard not to get anxious about it. After watching the terrifying experience of her getting taken off the ventilator, I hope she doesn’t have any respiratory distress or any other complications.


Other Jill updates:


* Her feeding has gotten much better. She is taking over half of her formula from the bottle now with the rest going in her feeding G-tube. On Valentine’s Day, it was the first time in months that I was able to hold her and feed her a bottle while she was fully awake. It was truly amazing.


* Before her surgery she was only drinking about 400 ml of formula (28 calorie concentration) per day. In the hospital the surgeon commented that this was at starvation level. Now she is drinking 740 ml of formula (20 calorie concentration). We are happy she is drinking a lot more. But she is still way behind where she should be for her age and weight. Our current goal is 1150 ml per day. So every feed we slightly increase her amount. However, she has had problems with retching (basically she looks like she is trying to vomit because her stomach can’t handle the amount) so we haven’t been able to increase the feeding as fast as the surgeon had hoped. A few times it has been so bad that we have had to take a syringe and pump out some fluid from her stomach. Not fun.


* Today it was a little disturbing that she has actually lost weight in the past week. Last week she was 15 lbs 13 ounces. Today she was 15 pounds 6 ounces. This is the first time I remember her losing weight. Due to the weight loss we are going to increase the concentration of her formula from 20 to 22 calorie.


* Jill got her first tooth on Monday. Yeah!


* We just received a letter in the mail today saying that Jill is approved for the Medicaid secondary insurance that we applied for. It wasn’t an easy process…lots of phone calls, paperwork, medical records submitted, developmental evaluation, etc….but we are thrilled that she will have this extra insurance for the next year. We are not completely sure what it covers, but it will hopefully offset some of our loss of income this year. (Bryan’s 20% pay cut and increase in cost of health care insurance).


* I am hoping to get more sleep at some point. I thought with the drip feed at night, I would finally be getting sleep. I’m definitely glad I don’t have to get up and make 2-3 bottles a night anymore. But Jill still wakes up for various other reasons. Last night was better, but the night before I was up with Jill at 12am and 1am, then Katelyn at 1:30am, then Jill at 4:30am, then Katelyn was up for the day at 6:45am.