Kayli spent 10 days in the hospital with Viral Pneumonia. She had Rhino, Enterovirus (the common cold). She was on the CPAP/vent for several days because her little heart was so tired and she needed a little help getting enough air to push open her lungs. The PICU dr's explained that Kayli would need to fight the virus herself (there are no meds to help). Putting her on the vent settings to breathe for her would only allow Kayli to stop fighting....she needed to fight off the virus. By putting her on the vent with CPAP settings, she was able to fight/breathe on her own, but with a little umph/help to open her lungs. Again, odds against her, KAYLI SURVIVED!!! The wonderful thing about Kayli being on the CPAP machine, is that it helped retrain her on how to breathe and swallow! lol She now is a mouth breather instead of a trach breather! This is a progressive step towards capping her trach, her speaking, and eating again!!! Just a little reminder here...Things happen for a reason! God has the plan, even if we don't understand why we are in the journey as we are! ;-) If Kayli wasn't admitted and put on the CPAP machine, we wouldn't have known she could learn the reflexes she has learned now!
Kayli came home to us with 2 doses of steroids left to take (she has asthma). Her pediatrician thinks she wasn't on the steroids long enough, because merely a week later Kayli was taken back to the hospital for the same virus (although no longer in her lungs/pneumonia). Basically, she was not entirely healed and the help she was given made her look better than she was. She went back to the hospital to continue healing, but is back home with us and is doing GREAT!!! Her asthma is under control, and she is back to being alert and anxious to learn! She turns her head towards us when we enter the room, she smiles with verbal prompting, and follows with her eye gaze during vision therapy!!! We are keeping her out of school for a month per dr's recommendations, so she is well enough and equipt enough to handle another virus spreading through classrooms. In the meantime, we will continue to do the therapies at home. I am excited for her teachers and thearpists to see the great strides she is making!
Current home therapies include range of motion, exercise ball for ab exercises, switch toys for cause and effect, tactile (touch) for sensory, and her Ipad for visual training (she is learning to move icons on the screen with her eyes!). Kayli uses a hearing aid but does not have the needed FM system to sort out background noises. She has eyeglasses now, that are custom made because her ears are lower and her eyelashes are so long! lol Both are traits of Trisomy. We are putting her on the Passi Muir valve (speaking valve) more frequently so she continues to swallow, learn to vocalize, and exhale through her mouth/nose. It is amazing to see how resilient and eager to learn, she is!
On a side note, while Kayli was in the hospital, I too, was admitted. I had a mass and abcsess in my right breast. I was admitted through the ER on that Sunday, and had surgery the following day. I was in the hospital with Kayli for 6 days (in a seperate room). The first couple of days, I was not allowed to see her until Infectious Disease cleared me. It was very hard on her and myself because I was stayed with her at the hospital, told her I was going home to shower and that I would be back in a few hours. When arriving back at the hospital, I stopped in the ER first, because my symptoms got worse. They admitted me, and I was not allowed to see Kayli. It hurt, and I cried because I could not be at Kayli's bedside, supporting, advocating, and protecting her. The staff was so kind, they put the phone to her ear so I could tell Kayli why I was not there with her. Kayli's nurses would come to my room to give me updates on her care and recovery. After 2 days, the cultures came back, and I was allowed to spend time with Kayli in her hospital room! <3 We healed together, and we are both at home now. She is recouping faster than I am (she IS younger! lol). I have Multiple Sclerosis, and when my body is stressed (surgery and infection stresses the body) then I have flare ups. I am struggling with my MS right now, while admiring the resiliency, adaptibility, and courage my daughter has! Kayli is an inspiration, for sure! I am grateful God has Blessed us with the lives he has given us! <3