I spent the night with Kyara last night. After a weekend of sleeping at home, it was difficult to go back. She was storming most of the night and I was very frustrated with it. I tried everything I could think of to calm her: relaxing music, position changes, pressure points, decreasing stimulation, etc., but nothing would work. Finally, around 5:30 am, she fell asleep. What a night. She then slept until 10:30 when our new PT came to work with her. Oops. I let her oversleep! Ha!
Kyara had a very busy day. She had 2 sessions of PT, 1 session of OT, and 1 session of speech. Then the speech therapist and the OT did another evaluation of her to score her for insurance purposes. This will be a score that they use when they talk to insurance about her progress and her need to stay in therapy. During PT today, Kyara held her head up by herself for a minute or two. She also worked on rolling over, with help, but still. The PT was impressed with Kyara moving her right knee into flexion a little to help her roll. Of course, Kyara need a lot of help, but ...baby steps.
I talked to the Rehab doctor today about a new approach to Kyara's muscle tone and spasms. The Rehab doctors believe Kyara needs a Baclofen pump. This is a pump that is imbedded in her stomach and has a cathater that would be inserted in her spinal cord. It would give her continous medication into her spinal fluid. This is suppose to be more effective than any oral or IV medication we can give her. They are discussing doing a "trial" next Monday by doing a lumbar puncture and administering a hefty dose of the drug. If it helps, they will do the surgery to place the pump soon after. I am a little nervous, but from what I hear, this can be life altering for the people it works for, so I pray it works for Kyara.
After I therapies, I went home for the night. Dad came up to stay with Kyara until Bunny comes after sorority. Kyara was pretty upset when I left, so that made me feel very sad again. But, Dad called about 8:30 tonight and said Kyara was awake and calm!!! Her heart rate was down in the 110s-120s! What a difference! I pray it stays this way and she has a good night sleep.
6 comments:
Prayers will continue to be cried out for Kyara. We are so thankful for all of the technology that is available in today's time for Kyara. We pray that the doctor's hands be guided through Christ Jesus. We pray believing and wait upon Him for healing to take place in Kyara's precious life. Love to each of you, Spokane
Glad to hear Kyara is calming down and CHOA has a plan in action. I think we are going to see great things in the future. It's great to hear you are able to spend time with Skylar. She has been so strong throughout this. We will keep you all in our prayers.
The Henley's
The baby steps keep us going!!! I am so glad you are back in Georgia! Our word today is "rainbow". Remember the pot at the end of a rainbow---it is full of hope and love for all of you. Praying for each of you, but Genie, especially for you. No one loves like a mama. I love you, Wink
God is good! Remain faithful! Again, Welcome Home!
The Vaughn's
Hey Guys,
I finally got a chance to get on here and check up on what's been going on, things in the PICU have been pretty busy since you left. I am so sorry to hear that the transition hasn't gone as smoothly as we had hoped for. However, it sounds like your faith is strong, your minds are looking in the right direction and you have good people all around you. Please make sure you are taking time for yourselves and staying healthy. Tell everyone I said hello, and stay strong.
In my thoughts,
Nick
Wow! A huge yippee for your mom's sororiety! What a wonderful family you have! We are still praying and thinking about you all everyday and sending the best wishes as well.
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