This is how tired Brett was after the appointments!
I have been having feeding tube issues* lately. I have also not been as diligent as I should be about keeping the feed on all the time and getting all the enzyme administrations done (6 times a day, about 3 hours apart). The early morning ones and late night ones are hard because he's asleep and to get him to take the enzymes by mouth requires waking him up. Usually he chokes, then he's awake. It's not a fun thing. Now there is a thing you can do to dissolve the enzyme beads in bisodium carbonate then actually add it to the feed for the late night or early morning feed. It is not the best scenario- it's second best, but it's better than not at all. Only one administration per day will be done this way. The rest will be done by mouth as usual. We also changed the formula again, in case it might make a difference. The formula itself is the same, just a different brand.
Just to make sure it isn't a lung problem that is causing an inability to gain weight, we are going to have infant PFTs** done again in the next week or two. He hasn't had these in quite awhile. He was doing very badly back then, and his lung function was just above 30%. The department chief actually said it was the worst she had ever seen in an infant. They don't like to do them when the child is sick, and when the child is well, it often seems unnecessary or even a bit risky since the child must be sedated. Although I'm not convinced the lungs are the problem, I actually don't know of course, and since it's been awhile, I don't think it's a bad idea to repeat the PFTs. So it looks like we will have quite a few scheduled visits to UNC in May. Please pray for weight gain and think HEAVY thoughts!
* Feeding tube issues: we recently switched Brett from what is called a mic-key button to a mini button (amazingly enough, they just happen to be called this - it isn't because of Disney or anything!). While I like the mini button for various reasons, the one annoying thing that keeps happening is that the one little tiny piece that locks the extension into the button breaks off easily. This last time when it broke off was a few days ago. I opened up my back-up and began to use it, but it kept coming off. The back-up looked like an adult size, but I thought it still might work. When it didn't, I called the good folks at Mid Carolina Home Health care to send me the correct extension. They did send the extensions but they were the mic-key extensions. I tried them, because I knew that they knew he had a mini, and maybe they were supposed to work. I found out they actually are supposed to work. But they didn't. The extension kept coming off - wouldn't lock in place. By this time it had been about a day and a half without a feed. Brett can still eat by mouth, so he wasn't hungry or anything - it's just that we are missing the opportunity to feed him continuously and theoretically maximize his growth. Since Mid Carolina's offices are on the way to UNC, I stopped by on the way back home and got the right thing. It actually did take the lady who was helping me about 15-20 minutes for us to figure out the problem, phsyically see that what SAID it was supposed to work actually didn't, and then for her to find the one that did, then be able to tell the difference in description to put it on our file so we don't get the wrong thing again. A minor inconvenience, but I can always count on the Mid Carolina people to help me and get it right. Sometimes it just has to be done in person!
**Infant PFTs -
Pulmonary function tests measure how well your child’s lungs are working. They measure how fast air can flow through the airways, how much air is in the lungs and how stiff the lungs are. This information is important in diagnosing breathing problems and checking to see if current treatments are working. The results of these tests can show if your child’s lungs or airways are obstructed (blocked) in any way because of asthma or other conditions that affect breathing. Infants are not capable of performing the voluntary breathing maneuvers necessary for measurement of lung function. Consequently, special equipment has been created to measure lung function in very young children. There is more preparation required for infant pulmonary function testing than for lung function tests in older children.
The child is placed in a special Plexiglas bed and a mask is placed over his/her mouth and nose. A loose fitting jacket is placed around your child's chest and abdomen. He/she is given a few deep breaths from the mask and then the bag is inflated so it gently squeezes the chest causing him/her to blow out. This is similar to asking the older children to take a huge breath and blow out as hard as you can. For the last part of the test we measures the size of the lungs. The top of the bed is briefly closed around the child. The air coming in and out of the child's lungs is stopped for a few seconds which causes a pressure change in the box and enables the computer to calculate lung size (this is similar to measurements obtained in older children using the box.
