This stunning girl has no idea what is headed her way and that breaks my heart. We met with the motility specialist at CHLA today. There are so many things I could report, but I don't feel like "talking" now, so I will keep this brief.
Liz needs some studies done at CHLA to help determine what is the cause of her motility and chronic impaction issues. She'll be admitted a few days before the day of the tests in order for them to do a clean out and ensure that she is clear of any stool. She'll then stay for the testing day and then to recover. She'll have an Antro Duodenal Manometry study, Colonic manometry study, and a repeat esophageal manometry study and repeat gastric emptying scan. This information cannot be gathered any other way and we need this done to diagnose the issue and offer her some relief. Unfortunately, we can put men on the moon, but the manometry studies are not done at many hospitals in the country, and so there is a waiting list that is months long. So unbelievable frustrating. We must wait about two months before she can get in. Ridiculous.
Because it is going to take so long to get the tests done, and because she is impacted now and having so many issues from the impaction, her Pediatrician wants her admitted this week to our home hospital for placement of the NG tube (down her nose) and for a clean out. She just went through the same things in April; I can't even think of telling her tomorrow that we are going to make her do the same painful and uncomfortable things again this week.  Using the NG tube means that they can give Liz the huge amount of clean out routine through the tube rather than her having to drink it all (which is so difficult for her given how small her stomach is). She'll be on a liquid diet, so the NG tube can also help for getting extra calories back into her via formula.

This is an NGtube

Her Pediatrician also thinks it is time for the G-tube and wants it to be done this week. The G-tube is placed surgically in the abdomen, and is semi-permanent. Liz would have the G-Tube in for months or years, and would receive formula feeds at night through the tube, as it allows access right into her stomach.
I want to avoid the G-tube at all cost, but it is looking more and more like we don't have a choice. I am asking for a compromise and would like the team to consider leaving the NG tube in until we get the studies at CHLA done, as those results may show that she needs tubes other than the Gtube that feeds into the stomach. BUT, I know Liz will NOT want to come home this week with an NG tube because she will have the tube coming out of her nose for months, and she will object to that in a huge way.
Such a mess. Weighing options and risks is too much. It is all just too much and I am in a really bad place tonight mentally as I just want this all to get better.
I actually voiced the words "I can't do this anymore", and I feel guilty for even thinking that. I wonder if other moms like me have ever said those words, or if I am the only one who has such weakness in this situation.
We are running a race with no set finish line; I just wish we knew the finish line so that we could cross things off and know that Liz's hard work and bravery would bring recovery at some point.
I will share more later. For now, just please pray for our Elizabeth.