Monday, April 11, 2011

GI/Feeding Team update

Jax did as expected in with the Feeding Team today. He worked with the feeding psychologist and she had us leave the room and view from the double sided mirror during a tantrum he had in the high chair. He has lost his spoon feeding progress, so I'm still pushing thicker liquids with a cup and need to keep working back with the spoon. Jax has complete down right sobbing and screaming fits when in the high chair and presented with food. It's SO hard to watch and remain emotionless (which you're asked to do). Jax gagged, screamed and tried vomiting through the entire process. If he hadn't already vomited up all his breakfast beforehand, he would've puked all over the therapist.
Jax lost weight as we suspected and is down to 22lbs, 4oz. He obviously doesn't meet the medical guidelines to get into the feeding program. The staff wasn't happy he was so sick with pneumonia, but they were glad that there was a reason for his weight loss. I was reminded again to not have expectations of time lines when Jax will get into the program, and when he does get in, to not have time lines of when he'll ever get off the tube. I know... but I still hold out hope every 3 months that he'll at least get accepted into the program. Maybe this summer...

We met with the GI specialist afterward and had a nice long discussion with him. He said it's not untypical for kids with GI issues to have a few weeks of lingering problems after a big illness, so he wasn't surprised to hear that Jax is still getting sick every morning. We talked a lot about mitochondrial disease and where to go with Jaxon from here. The doctor said that while he doesn't discount that it could be a possibility, he does not think Jax exhibits new symptoms to move forward with testing. He said that lung issues aren't typical "next signs" over things like the brain or other major organs. Since Jax is moving forward with his development delays, he thinks that more signs still point to an immature system, especially since there's reasons for all of Jax's issues. The doctor said that they typically test kids for mitochondrial dysfunctions when there are no other reasons for the delays or medical issues. Since Jax is so tiny, the doctor truly believes his system will get better as he grows. We just need to get him to grow, which is hard when he keeps getting these virus' that pound him so hard. His symptoms still point toward having such low blood flow during my pregnancy and being born with growth restriction and prematurity - all due to the knotted cords from mono/mono twinning and twin-to-twin transfusion syndrome.

We're starting the drug Periactin back up to help with Jax's hunger and ease his tummy and hope that helps things along a little bit. He'll take it twice a day for 3 weeks on and 1 week off and see if that can help him more. So we will keep the faith and keep on, keepin' on.

6 comments:

Erica said...

I'm delurking to say hello, and to let you know how much I admire you for your strength and patience. I honestly don't know how you do it. Keep up the amazing work you do!

Heather said...

Hoping and praying.

Angie said...

I started reading your blog from the beginning here at work on Friday, and have finally finished. I have laughed, cried, worried, wondered and been in complete awe at how you handle all of this. YOU are amazing. Your boys are angels and I enjoy seeing your pictures and reading your posts. Your boys are lucky to have such wonderful, loving parents. I will keep you and your family in my prayers in hopes that some day you will find the answers that you are searching for. My now 3 year old was diagnosed with acid reflux as a newborn. The very same day we brought her home from the hospital she was re-admitted because when we put her to bed that night she spit up, stopped breathing and started turning blue. I was scared to death. We were discharged a day later and she essentially spent the next 3 months propped up constantly. Fortunately we did not have to experiment with any meds. I know this story pales in comparison to yours but until then I had no idea babies could have acid reflux problems.
Keep up the good work - you are doing an awesome job!!

Jenn said...

I am sure it must be disheartening to keep having his acceptance into the program delayed but I was just thinking about all the boys had going against them in the pregnancy when you listed it all in this post...what a miracle they are where they are today.

Little Wonders said...

Oh my word, Annie, it IS like we are living parallel lives sometimes! Such wonderful news, though. I do think that doctors still have very little clue about just how detrimental the in-utero conditions of a TTTS (and in your case coupled with a mono/mono) pregnancy can be on such a little body. He's such a little miracle!

Laura said...

Finally getting an chance to follow up on the feeding team results. It sounds better than you were thinking it would be, at least as far as the Mito concern. I am starting to think that 26lbs is the magic number. I went back and looked at all my GI notes and blog posts and it occurred to me that both boys started getting much less sick and pukey, much less frequently, once they hit about 26lbs. I'm hoping that this summer is the best yet. Warm sun, fresh air, makes a boy hungry. So does the periactin. I hope that it works as well for Jax as it does for my guys. There's still hope, always hope.