Samantha seems to be adjusting well to the new formula and lack of miralax. Other than an early morning puke yesterday (which may be related to overnight feeds), she has been tolerating things well. She had a gastric emptying scan on Monday and it did not show anything other than a little bit of reflux. Her stomach finally looks like hers again and she no longer looks like a balloon. She had a bowel movement after a suppository this morning and it actually had some consistency to it. I hate to even type a positive stomach report as I don't want to jinx anything. But for right now stomach issues are better. And, that is a good thing.
Samantha continues to do well with talking. She has tolerated the speaking valve for a couple of brief trials. I am not sure it makes her talk any louder. But, it may help with trying to eat by mouth later on. So, we will continue to try it.
They are starting to slowly wean the vent settings, which I am concerned about. I know technically it is a positive step, but I do worry that her "numbers" don't always show the true picture for Samantha. And as she is not QUITE herself yet, I may miss some of Sam's signals that she may not be tolerating the wean well (or perhaps I will attribute something to the wean when it may just be her being tired.)
A few weeks ago her numbers (o2 and CO2) looked fine a couple of days before she went into respiratory failure. Hopefully, I will be able to tell if things aren't going well with the wean. And, it is best to try it here rather than when we are outpatient. It may seem odd that I am wary of lower vent settings. But, as we already went through the trouble of placing a trach, I'd like to use the support of the vent if she needs it (mito is a disease of energy, and the vent spares her some) while she recovers.
Sam had her 2nd trach change yesterday and Val and I watched rather than participate as we didn't feel ready yet. We each need to take out, and place three trachs. It is difficult to know that I don't have the skills to keep my child alive right now. But,we hope with time all of this will become second nature and Val and I will be experts in trach care.
In summary, things are going as well as they can right now. Sam is finally warming up to some of the nurses and hamming it up a bit for them, which is nice to see. She still hates trach care, and I can't say that I blame her.
Until next time,