Jilli had an appointment with someone in the speech department at Children's two weeks ago. At this point we know multiple people in the speech department because they work closely with GI on swallowing issues (which Jillian has). Jillian's new GI doc sent us back to speech at Children's (this is different from the speech we see each week in therapy) to look at her swallow again.
Honestly when they told me this I was not sure how to feel (I told someone that I think they enjoy watching me go insane, lol) because we have done these trails before and they have ALWAYS not ended well and we have not "fixed" anything since the last one and nothing with Jillian's GI or respiratory system is any better then the last time we did one of these (in fact we added oxygen since her last one) I had to still be hopeful that maybe this time was different, but realistic at the same time.
We met with the speech path and we decided we would try 10ml water trial again. We decided on water because it is least damaging to the lungs when aspirated. The goal was to see if her body could take something orally in really small amounts (15ml=1tablespoon).
We tried multiple times. Jillian will happily take water from a spoon. For how little experience she has had with eating she actually does ok with it. It looks like a baby first taking baby food off a spoon but that is where her skills are.
Then when she was done she would start says "hurts mommy" and "ow" while rubbing her throat. She would also hold her belly. She would have these times were she would look like she was "spacing out" and you could not get her attention (she has done this for a long time after having things orally... the thought is that it is a pain coping mechanism, it looks like an absent seizure). She was also refluxing a lot. You could her the water going up and down her throat and she had times where it would come back up into her mouth. Her breath smelled like puke. This would happen for over an hour after she ate. She would also start coughing and the cough would last for a day or two after she had the water. The cough is a sign of possible aspiration.
We stopped these trials a few days ago because 10ml of water is NOT worth risking aspiration pneumonia or an oral aversion. Jillian has always been fine with putting things in her mouth (sometimes a little too fine with it causing her to aspirate on a piece of food she picked up off the floor back in January) so we really do not want to have her start to associate food with pain because then we are just adding an additional problem.
We had an appointment with Jillian's ped on Monday just to check in. I told her about what was going on with these water trails and she told us to stop (we already had). Yesterday I called speech to check in with her to let her know how it went. She called me back yesterday and said she had a meeting to go to but she just wanted to let me know quick that she agreed with the stopping and that she would call me back so we could talk more.
She called me this afternoon and we were able to have a long conversation about what is going on. She agreed that doing this water trail was not working. We went back to her being NPO except to take her two meds that have to be given orally for them to work properly (she loves taking these meds and they are a really small volume... she still refluxes them sometimes however not as much with the small amount) We are debating if one of the tests they are looking to do next month is worth it because it holds a risk of her aspirating. She is going to go back to the doctors and talk to them about it. I truly appreciate all of the time she took on the phone with me today as we brainstormed the best ways to help Jillian.
It is good to check in every once and a while and see where her skills are at and how she is doing but we always have to keep the main goal in mind to keep her safe and healthy as can be. Her eating orally is NOT safe. Thankfully she has a GJ tube so she is able to get the nutrition she needs and that is what is most important. So we go back to where we were, but for now that is what is best for her so I am good with that. Hopefully the tests in July will help us figure out some more pieces to the Jillian puzzle and I am hoping for genetics to come back with some pieces too.
We are long enough into this road that if GJ tube feedings are the safest thing for her forever then that is what we will do, the biggest thing is that however we get nutrition into Jillian's body needs to be the best way for her.
In a side note, I want to thank my hubby for a fun date night last night. For our anniversary he bought me a Paint Nite class. Painting is not Brent's idea of fun, but I find it very relaxing. Most of the time we spend time as our little family of 3 and we really enjoy that but it was nice to get some time out with my hubby! We had fun painting and I bet if you asked him, he would even say he had fun. Jillian decided our paintings needed to be hung in the kitchen. I am not sure if that is where they will stay forever but that is where they are now.
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| She insisted that she had to wear her scarf to leave the house. She has taken to picking out her clothes and accessories some days this summer... she is my fashionesta! |
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| Jilli blasts off to space with her great daddy carrying her oxygen for her |
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| This child LOVES Charming Charlies! Grandma brought her back a new shirt from "Mickey's House." Her waist is small enough around that those are 6mo shorts! Summer is the easiest time to dress her because her waist is so small but her length is that of a 15mo old |
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| Us painting... I even dressed up in a cute dress and make-up! |
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