While she was under they inserted the nasal tube that is monitoring her acid reflux. She is horribly uncomfortable and is non stop crying. I feel so bad for her. She only has to it in until 3:30 tomorrow afternoon but that must feel like forever for her. I am sure it doesn't hurt, it just is uncomfortable. She is dreading her nightly pills she has to take.
She was still having chest discomfort so they ordered another xray and chest ultrasound. Everything was normal so we are continuing Tylenol for pain. She is also having some side effects from some of her meds. Her face looks sun burnt and she has very chubby cheeks. Her doctor changed one of the meds to see if the sun burnt look would go away. The chubby cheeks are here to stay. She hates them. But we think she looks cute and healthy.
Gracelyn has another cytogam IV injection tomorrow at 9am. The last one was around 4 1/2 hours. So, tomorrow is going to be miserable for her, having the tube down her nose/throat and being on an IV that makes her feel crumby.
She is barely gaining weight but is eating good. Except for today, she is in good spirits and can't wait for the Draacks to come visit for New Years! She reminds me every single day that she is excited for them to come.
She is also working very hard on her school work. She is dying to go back to Bel Air Elementary. She is very worried about getting sick, thou. She is aware of the risks of getting sick within the 1st year after transplant. But, I think the excitement of seeing her friends and meeting her teachers in person is too much to take. She said, "I'll wear a mask everyday if I have to, mom!"
If everything goes smoothly, we'll be home at the end of January. Hmmmmmm, January in Minnesota is not my favorite time of the year :-) However, being home versus being in Houston.......... is priceless!