Tag Archives | swallow study

Day 8

I never know how God will reveal himself. Sometimes I struggle to find Him. But today He made himself known.  My pity party is over.

Swallow study complete.

Brave Gabi sat in a boosted up chair with straps and the radiologist and the SLP positioned her and the camera at the IMG_7878 (1)perfect angle so the video was recording her mouth down to her stomach.  They gave Gabi 4 types of liquids to drink.  From thin as water to thick as pudding.  All mixed with barium.

Good news- she did great behaviorily.
Bad news- Preliminary results were not good. She is aspirating thin liquids. Both the doc and the SLP wanted to review the images and then give me a full result but, of course, the machines were down.  We will get full results tomorrow.

But according to SLP, she is aspirating thin liquids but coughing to get enough of the liquid out of the airway back to the esophagus.  It is her self-protection. She never coughed  enough for us to be alarmed.  And of course, I feel terrible that we didn’t know this was happennig. Looking back, yes she did cough but just a small, almost kind of habitual cough. Oh the ugly guilt and the bitter resentment set in today. But I was also so grateful that the SLP ordered this test and we now have this information. We can now move forward with the best possible way to help our little girl.

Treatment is to thicken all the liquids with a thickening agent.  It turns the liquid into a nectar type of thickness. She might also start a new treatment called Vital Stim Therapy.FullSizeRender

The VitalStim® Therapy System involves the administration of small, electrical impulses to the swallowing muscles in the throat through electrodes attached to the skin overlaying the musculature.

And now we get to add a pulmonologist to our list of specialists! Super psyched about that.

Her tantrums are still happening for every single therapy. But I am not backing down.  She is testing me and I cannot give in to this.  One of my most inspirational friends who is  one of the best parents I know and happens to be a nurse agrees with me to not give in.

It was a very trying day.  We still don’t have answers for our goals for the program..One of those days that you wonder where God is.

I’ll tell you where I found Him. Friends from long ago, friends for life and new friends are reaching out to me because of this blog and my openness. It’s not easy for me to open up like this.  I feel quite silly but it is my therapy and I also don’t want to ever forget these moments. But because I open up, we have received so many blessings.  I am so thankful for the genuine friendships that I have… that is where God is.

Science experiments in the playroom tonight

Science experiments in the playroom tonight

Often times, here, I just want to sit in our room and read and sit with Gabi by myself.  But I know that every person here, the staff and the patients here are an opportunity.

An opportunity for love.

We went for our thousandth walk through the hallways tonight and met a new girl here.

13 years old. brain cancer. chemo. brain surgery.  wheelchair. lost all function on her right side. And SHE told Gabi how brave she thought she was.  There’s God again. Speaking through a 13 year old girl.

And you know where else I find God? My husband.  My teammate. The one I don’t thank enough. The one that drives me crazy but the one I can’t live without.  The one that I take for granted.

Ya, I’m over my pity party.

Much love,
Teri

 

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Day 6 & 7- Pitee Partee

Rough day. rough weekend. Kinda having a pity party…IMG_7870

But I’m not overlooking the fact that we are one week down!

I got to go home on Saturday! It was so great to see the kids and sleep in my own bed.  WE try and cherish every moment together but I also had to go grocery shopping to stock up for the week, run errands for pet food, run to redbox, do laundry.. etc.

It’s just temporary…

Frustrations here at hosptal.  The hospital staff changes on the weekend. We were in such a good groove. She was kicking butt and then the weekend hit. she did ok, but I don’t think the feeder did as good as job as the FT staff.  SHe was down to 17.4 kilos this morning. Which doesn’t seem like much of a loss compared to 17.7 on Fri but like i said, it is all about the numbers.

Gabi continues to cry and begs me not to go into the feedings. “I’m not hungry.” “I don’t want to eat.” “don’t make me go.” It’s hard but I can handle that behavior because she’s fine after a few minutes with the therapists. But today at her scheduled snack time, for the first time, she refused to eat.  She wouldn’t open her mouth for Ms. Sheila.  And the fits before the feedings and the therapies are getting worse.  She is testing me and testing the therapists. I’m sure she is sick of being here, sick of the food, sick of the work. It’s a fine line for me. A fine line to cross between comforting her enough but also not enabling this behavior.

And I’m struggling. She refused to eat in her dinner feeding also. And now she has lost about 400 calories. And it’s all about the numbers. I measure her urine output and monitor her poop schedule too. I tried to talk with the psychologist to see how what I am supposed to do.  But of course, the psychologist already left for the day.  Ms. Sheila, her feeding tech, told me this is totally normal. But I don’t want anything to slow down her progress! And I feel like a caged animal in a prison system.  Sounds like an exaggeration but I shouldn’t have to request to meet with a member of the team and then have them not be here!

This is all getting very complicated and I just need clarification.  It’s not just about her eating, it’s about the behavior and it’s about her extensive medical history. Today in speech, the therapist noticed some crackling in her lungs and heavier breathing.  She wanted to get another swallow study last week but then decided not to.

But today a swallow study was ordered.

We head to the main hospital tomorrow to check for signs of aspiration. If she is aspirating, that changes everything.  But I do not think she is.  Her last swallow study was 4 years ago and there were no signs of aspiration. The results just showed a paralyzed vocal chord. I know 4 years is a long time but  I think we would have seen some signs if there is fluid going into her lungs. But it will be good to know for sure.

She is eating a lot of blended foods… including a delicious blended beef stew, blended ravioli, blended mac n cheese, yogurt and still whole milk mixed with Carnation Instant Breakfast. She is doing well with those. But I guess I’m just overwhelmed and confused with what the overall goal is.  I am happy with what she has already accomplished which is getting off the nightime pump feeds.  But what now? I could head home now and feel like this has been a great success but we still have 3 weeks. I hope to get some answers tomorrow.

IMG_7864The kids were off school and it was hard not spending time with them especially on this beautiful Texas day.  Gabi and I did get to get out in the courtyard and soak in some sun and we went for a walk around the block so we are getting out.

Like I said, pity party.

It’s temporary.

There were a lot of siblings here on this MLK holiday, so the playroom was hopping.  But it made me miss my family even more. They weren’t able to come today.

Just temporary.

Pity party.

IMG_7866

There is a mother here that also has 5 children. She is here with her youngest child, a boy at 10.5 months. They thought he just had some sensory issues and eating issues. He has an ng tube and got here the same day we did. A week ago today.  He was literally just diagnosed with autisim this afternoon. She is devastated.  She doesn’t know what her son’s future will be, or what her future will be. I could offer nothing to her but a listening ear.  We talked about our faith and I know she will be ok.

Everyone has something they are struggling with.

Thanks for reading. Thanks for the prayers, the texts, the emails, the gifts, the dinners, the babysitting, the friendship and the Novenas.

Kids with Grandma Colleen. We are forever grateful for her flying in to help us...

Kids with Grandma Colleen. We are forever grateful for her flying in to help us…

My family!

My family!

Much Much Love,

Teri

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