Feeding tube placed

We have had a very quiet mellow day today. Colbey Raye has been extremely sleepy, and lethargic. OT came in and went out, speech came in and went out, the rehab doctor came and went out, Colbey Raye was not in the mood to interact with any one and they respected her wishes and let her be. It’s being a huge struggle to get her to take her meds and she has not received any pain medication from 8am until 4pm because she has been throwing up after the medications are given. She did eat yogurt and oranges for breakfast but threw them up when we tried to give her the 11am dose of pain meds. She has not eaten anything since. Due to her low interest in food today and complete refusal of liquids it’s been decided that a feeding tube is needed to get her back on track to a heathy calorie intake. She had her feeding tube placed this afternoon and is now getting her first round of supplements. I was feeling a little sad as this is a step backwards, but I’ve realized this could be just the thing miss Raye needs to get her energy and spunk back! I feel more energetic and lively with good food in my belly, I bet she will too!
It has just been Colbey Raye and I today, we’ve spent most of the day snuggled up together now that her EVD is out and she is loving the closeness as much as I am! Colbey really enjoyed the head bath I gave her today and she smells so fresh, her hair feel much better now too, no more goop and grime. Her arm and leg movement has still not improved, she was showing signs of plasticity in her right foot yesterday but it seems to be better today! We are putting a lot of sensory feeling, vibrations, rubs and tickles to her right side in hopes to “wake it up” a bit. She is feeling the actions, and will giggle when I pinch her right knee cap and tickle the bottom of her foot! She really enjoys when I take her right hand and rub it in her hair, she is a hair girl and used to pull and rub her hair with her right hand when she was tired. Now she has resorted to pulling her hair with her left hand but gets caught between the decision of holding her wubbanub or pulling her hair! Oh the tough choices one has to make at the age of 1! 😋
We are still trying to figure out if impatient rehab will be beneficial or not for Colbey Raye. So far she has not been up for therapy visits, and she just cries when they try to get her to do anything at all. We are giving it the weekend to see if Colbey Raye will cheer up a little after a few more days to feel better, but the rehab doctor we have been speaking to and myself agree that intensive outpatient therapy may be the better option for Colbey Raye anyways. Colbey Raye gets tired quickly and she likes her own schedule and does not want to be manipulated into doing things (back to the independent side of Colbey Raye) so it has been a challenge to get the therapist in to work with her at a good time. A good time for Colbey Raye to be cooperative that is! We will be waiting out the weekend to see how she improves and will then make a rehab decision. Colbey Raye is also getting a video swallow study done Monday and that will determine when Colbey Raye can get rid of the feeding tube. Another weekend to improve and rest in the hospital, missing home but time to heal is still much needed!

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