We did the swallow study again today. There is still a leak, but it is smaller than it was before. Although we wish the leak was gone, this is still good news. Kyara has been battling infections, and today the doctors decided to remove her central line because they felt it was contaminated. They were able to place a Pic line instead in her left arm. She is doing well and they are SLOWLY weaning her off the medications. This will take days/weeks. The doctor told me tonight that she is still getting enough drugs to knock most adults out! Because Kyara has had sedation medications every 1-2 weeks for the last 2 years, the doctors feel she has developed a tolerance to the medications, so she has required higher doses. This just means we have to take our time weaning her off. Today she was more awake and was able to tell us when she needed to go to the bathroom and if anything hurts. That has been very helpful!
Gunars and Skylar went home today. They will drive back up on Friday and spend Thanksgiving week here with us. I am looking forward to seeing them again! My dad is coming up tomorrow to stay a few days and help us out some.
The Ronald McDonald House has been a great place to stay. It reminds me of a college dorm. Each family has their own room and we share a bathroom with another family. There is a kitchen, dining room, family rooms, and game room. There is also a playroom for younger kids. Each family has a chore of the day and groups in the community come in most nights to cook dinner for us. It has been nice. It is a like a support group because everyone there has a child with a major health problem in the hospital. One family we have gotten the pleasure of getting to know have a little girl who had open heart surgery on Wednesday last week. She is doing GREAT and was discharged today! Holy cow! I find that absolutely amazing! She was in ICU for only 1 day and then on the "floor" for 4 days. She has healed so well. It is amazing!
6 comments:
To hear that Kyara can communicate with you is wonderful! I am glad to hear that you have a "support" group at the RMH. Must be helpful to know that others are going through similar experiences. Take care!
Ms. Michelle
This has all been great news! We are so thankful that she is now awake enough to tell you things and we know that is a great relief to you. We hope that she continues to heal and that she does not have anymore bumps in the road. We can't wait to be able to see her more awake and waving at us here at Willis Road. We miss her so much. We also hope that you all have a very Happy Thanksgiving! Give Kyara a Big Hug and Kiss from Mrs. Carlisle and Mrs. Laurie. Tell her that we miss her so much in class.
Keep on fighting Kyara!!! We are hopeful that you will be able to enjoy Daddy and Skylar's visit next week...hopefully you will be feeling better then...glad that the RMH is a good place to regroup for you...and to know that others are going through similar situations is helpful.
SO glad to hear more good news! Keep up the hard work...Kyara will be off to the races soon!! Stay strong (and keep warm up there!). Love you guys! Heather and Jimbo and the Furry Four
Great news! I'm thankful to hear that she is able to tell mommy things now; I know that must be a relief! Please tell her that we all miss her. Take care!
Love to all
Nurse Misty
I am soooo happy to hear that Kyara is making such stides in getting well! I am thankful that all of you have been able to receive the strength, support and encouragement from so many others around you!
Kyara, keep up the good fight, girl. I know you can do it. What a tough and amazing girl you are! Genie, the website is WONDERFUL. Although at times, it has been difficult for me to read the blog each day, I have been able to catch up when I get back from traveling. Stay strong to all of you; best wishes and love always, :)Stephanie Rosehart
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