I did a personal no-no today and Googled something related to Angels medical care. His transplant, cancer and resulting issues are so extremely rare that not much pertains anyway. But he is having some symptoms after starting this new medication to treat CMV and I wanted to know if they were side effects. Sure enough, extreme thirst, weakness, tremors... all side effects of this crazy medication they are using. Angel has been desperately thirsty - which really sucks when you are not supposed to take anything by mouth. They are letting him take sips of water but it is causing his outputs to go up. He also feels very weak and shaky. He has also been bleeding quite a bit more the last few days. And a low-grade temp to add to the list today. We wonder if he will get a little worse before things start getting better. We are often asked how Angel isnt in the ICU. And it really is due to his incredible hospital and medical team. His nurses now only have 2 patients and are able to manage everything going on with him on the hospitals regular pediatric floor. They are super-nurses. He would need to go to PICU if his breathing, blood pressure or heart were heading in an irreversible direction and life-saving measures needed to be made. But I marvel at how much they can and are doing for Angel in his cozy room he has been in for most of the last 9 months. It is a happy room still with birthday signs up, Avengers and Agents of Shields posters, Christmas garland and lights, not one but TWO Christmas trees, artwork from his siblings, bright pillow cases from Team Angel and blankets to match (thats moms silly desire), and a steady stream of lovely people coming in. It is a happy room. But often lately with curtains drawn and hushed tones. Well keep pushing through. We know our boy. We know when to push and when to recede... We know when he is just grumpy and when something else is off. We are intimately aware of all of his nuances. A random nuance? He is losing his eyelashes. Strange, I know. But today I could see them on his puffy cheeks as I kissed them. His head is still bald after the radiation to the brain (apparently it can be permanent?!) but he had the rest of his hair on his body back. It is curious to me. Anyhow. Every detail.
Posted on: Fri, 19 Dec 2014 06:37:59 +0000
Trending Topics
Recently Viewed Topics
© 2015