These last few days are sooo long. Soooo long. The days are all running together and Gabi’s behavior is very predictable now. But we are almost there!!!
As soon as the vital stim is placed on her throat first thing in the morning, she refuses everything.
She is scared of the wires and fights the entire time it is on. She won’t cooperate at all.
It is placed on by her SLP at 8 am and then is removed after her speech therapy session, which is usually about 10:30. It is on for an hour each day. During breakfast and during speech.
The good news is, I think I actually see some improvement in her ability to swallow. We fill up a medicine cup with about 15 ml of thickened CIB(whole milk mixed with chocolate carnation instant breakfast and then thickened with SimplyThick) during her meals. It is like a milkshake consistency but doesn’t melt in your mouth. It stays thick. Last week, it would take her at least 8 sips to finish the cup but now she can finish it in 3 gulps. So, each gulp is about 5 ml. She can now drink up to about 6.5 ounces in one sitting!
They are not going to do another swallow study before we leave. Her SLP wants to do another round of vital stim in outpatient then repeat the study. So it will be a few months with the thickened liquid for sure. Then we see if the vital stim improved her swallowing and stopped the aspirating. The hope is of course, that yes the vital stim worked and then we can try giving her thinner liquids.
I have lots of questions for them before we leave.
- What does this look like for school?
- When can she start feeding herself?
- What can I do at home to get her to strengthen her chewing?
- How will outpatient follow up fit into our schedule?
- Do I have to buy a rifkin chair for her to sit in?
Gabi is having fun with all the kids here but she is ready to go home. She is testing my patience in every way possible. The begging for presents, the whining, the complaining. I am understanding and have loads of compassion for her but at the same time, I still have to hold my ground and be her parent. It is challenging when she fights the nurses when they need to check her vitals and every single transition is a drama scene. I can feel the tension in my shoulders as I lay down on my super awesome and comfy air mattress.
I am out of patience. I am done with the nurses checking to make sure she is pooping ok. I am done recording her urine output. I am done with tile floors. I am done with the gross coffee. I am done with the vinyl chairs. I am done with the TV’s that have 5 channels. I am beyond done being away from my family. And I am SO done with the nurses peeking into our room at night. I asked them exactly what they are checking for and why it has to be every few hours. To make sure we are breathing? To make sure we haven’t run away? Believe me, I will let y’all know if we need anything.
Even though I rigged the door to be quiet when opening, the bright lights from the hallways still wake me up.
The program has taught me a lot but in ways that I never saw coming. I have met friends here that I hope to stay in contact with forever. As some of our friends here have left, the kids have emotional moments saying good bye.
But I have to say I am proud of Ethan and myself. We advocated for Gabi but also respected their opinions because they are the professionals… even though some of their ways are stupid
God was with us all along here.
I have learned that this is going to be an ongoing battle for my dear Gabi. My patience will continue to be tested but at least I know I am not alone.
Thanks for the love! 4 more days!!!!