She's Coming Home

Progress and parties

Another 2 weeks went by. It was busy, 4 hours of therapy a day. It's been 3 months now. I've made progress in speech, I'm getting louder and I can make more sounds it's just muscle control that's the problem, same as everything else. I can now, sometimes, make a certain sound when she asks me to. I've gotten better at sitting in PT, I don't need anyone supporting my head and I can almost sit for a minute, in OT I'm working on opening my hands so I can support myself better when I'm sitting and so I can grab things. I'm also still walking to the treadmill everyday, I still haven't managed to take a step but my head control has improved there too. Medically I'm doing a lot better, I'm back to having 3 feeds a day instead of being on the continuous feeds, I'm just on hi-flow oxygen at night and I haven't had a seizure in 2 weeks. Today I'm doing a swallow study to see if I can start eating by mouth again.

Nat- good morning!
Gabby- hi
Nat- ready for your swallow study?
Gabby- nervous
Nat- you've been getting ready for this in speech right?
Gabby- yes a bit
Nat- I think you'll do great. Lisa will be there
Gabby- I know. I'm just nervous
Nat- ready to get dressed and get up?
Gabby- yes

She took me off oxygen and put the speech valve on then got be dressed and a nurse came in to help get me in my chair. Then she put my braces on.
Nat- ready?
Gabby- I guess
She brought me to radiology. For a swallow study they mix stuff that can be seen on x-ray with the food then watch as you're eating to make sure it's all being swallowed and not aspirated, going into your lungs. Lisa was there waiting, she took me in and Nat left.

Lisa- ok, let's get set up.
She flipped the head supports down, I still use them in speech sometimes so my head can't fall. She also put the elbow braces on so my arms can't get in the way.
Lisa- ready?
Gabby- I think so
Lisa- Gabby?
Gabby- ok yes ready
She gives me a spoonful of puréed something, which is difficult because my head is moving around. Most of it ends up back out of my mouth while I'm trying to figure out how to swallow, nope, all of it

Lisa- that's ok, we'll keep working on it in speech. Try again, you have to swallow some here to get cleared to keep trying.

She puts another spoonful in my mouth and again most of it comes back out but I get some to the back of my mouth and choke a bit then swallow.
Gabby- I did it
Lisa- awesome, second try that's great!
Gabby- messier than my 2 year old
Lisa- one, that's normal and two, you have a very neat toddler!
She laughs and I smile.
Lisa- ok, let's try some more
She gives me more and I manage to swallow a bit of it, then she tries a thicker blend and I can't figure out how to swallow it.
Lisa- that's fine, I just wanted to test what would be best. Now time to try drinking.
Gabby- ok
It's water mixed with the contrast stuff. First she tries putting a straw in my mouth but I can't figure out how to close my mouth and suck to get anything. So she switches to a different cup and tips some into my mouth. Most of it pours back out of my mouth and I choke, she tries a few more times and I think I manage to swallow some but I'm also choking a lot. Then the person running the study says to stop.
Lisa- ok, that's it. I'll review it and come tell you the results in a bit, no speech today
Gabby- ok
She wiped all the food off my face then brought me back to my room. Nat saw my come back and came in.
Lisa- I'll see you in a bit
Gabby- bye
She left

Nat- how was it?
Gabby- gross
Nat- you didn't enjoy hospital food!?
She joked
Gabby- did you know that hospital food can get worse
Nat- I don't think that's possible
Gabby- it is. Blend it
Nat- ok yep, I can imagine that would be worse
Gabby- ya
Nat- other than the taste how'd it go
Gabby- ok. Very messy very hard
Nat- do you think you passed?
Gabby- I don't know
Nat- I'm being paged, bye
Gabby- bye
I hung out in my room until OT and when I got back Lisa came to tell me the results.

Lisa- hello
Gabby- hi
Lisa- I got your results. You just passed for eating, the water was 95% aspirated so no drinking.
Gabby- ok. I was choking a lot trying to drink
Lisa- there was still some aspiration with eating so for now you can only try eating with me in speech, all your nutrition will still be through your tube. When you've made progress in therapy you'll have another swallow study to see about eating more and you can try drinking again.
Gabby- ok. So tomorrow I try eating again?
Lisa- yes
Gabby- can I have better food
Lisa- you can ask someone to bring you something but I'll have to approve it. There's a certain consistency that's easiest to swallow and not aspirate. Thicker yogurt or pudding would probably be ok.
Gabby- ok. That stuff was gross
Lisa- part of that would be the contrast but ya, I'm not entirely sure what that was.
Gabby- nothing good
Lisa- ok, I'll see you tomorrow.
Gabby- bye, can you ask someone to come in
Lisa- sure
She left and then Jen came in