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,
Monica
So happy to hear that her tummy is better!
ReplyDeleteI am also glad to know that they aer trying to wean her vent settings down, but completely understand why you are so weary about it! Youare right! Mito is an energy thing. Just politely tell the docs that you just don't think she's ready yet and explain it just as you have here. Tell them that you just think she needs a little bit more time to recover. After all she's been through, she needs to have some space for recovery, you can't just push stuff on a mito kid. They like to do that with Quinn with feeds and it ALWAYS ends horribly. It may LOOK like she's doing ok, but sometimes, she's just not ready and eventually, it catchs up to her.
It's probably a bit differetn with a trach, but much in the same as well. It is an adjustment for you too as you get used to Sam's "new normal".
Thinking of you! i'm just really happy to hear that Sam is doing ok.
So many troubles for such a wee girl. You're all in my thoughts.
ReplyDeleteOh goodness - I'm so glad to hear the tummy troubles are improving, at least! I understand being nervous about the weaning off the vent. It would scare me, too. Will it hurt to leave the vent settings where they are for a while? If not, I'd get them to leave it until things settle a bit more and you have more comfort with the idea that you know Sam's new normal.
ReplyDeleteYou're doing an amazing job, and, as always, y'all are in my thoughts and prayers.
Deb(batx)