Yesterday was another clinic day. Docs think SAMs rash is shingles and so now we doubled the dose of her antiviral med and give it to her four times per day instead of two. They said this is common for immunocompromised kids and things like this will crop up throughout the year ahead. The red bumps are mostly on her cheeks, neck, and the back of her head. It seems to only itch when she is trying to sleep and her bald little head gets sweaty. She also received her monthly iv antibiotic of pentamidine which helps protect her from one dangerous type of pneumonia. This causes nausea and vomiting but this was the first clinic visit Sam didn't get sick, so that's a small win!
Her labs looked pretty good although we expected that given she just received platelets Monday and red blood a week ago. Her ANC was up a bit from Monday and was 1.2. The other good thing is her "chemistries" were mostly all within range as well. These measure her electrolytes (sodium, magnesium etc.), nutrition (protein, calcium), and markers for liver and kidney function. Her liver numbers were elevated Monday but looked better today. This is great because Sam has been eating better and I haven't had to pump as much for supplemental feeding thru her g tube which is helpful because now that we are home, it's virtually impossible to fit it in :) I'm hoping we will stay on this track of starting to enjoy food again! Her tastes have changed a bit which they said is a common side effect of the chemo so we are just trying to learn what the "new Sam" likes now:) So far hummus is a huge hit:)!
We got home after only five hours yesterday which was a bit better than the typical six. Wednesdays are the worst because Sam is due for her picc line dressing change and she screams and cries through the whole process every time. It is painful and scary and requires multiple nurses to hold her down every time. This is after a throat swab, typical blood draws, about five sets of vitals, and a swab of her bottom. I feel more anxiety on these days than almost any other because it's completely unavoidable and does not get any better no matter how many times we've gone through it. It's hard for us to fight back tears and the nurses hate doing it, but it gets done... One way or another.
As we were finally leaving in the elevator and Sam's little eyes were peeking out of the top of her mask and she was sniffling still from crying so hard after her dressing change, my eyes met the eyes of another mom who was holding a little boy with his head resting on her shoulder as well . He looked about 3 and was wearing a mask like Sam. I have no idea his diagnosis, but his bald head, slight frame, and the fact that he was also leaving the cancer/ blood disorders floor let me know he hasn't had an easy road either. He looked up and said "Mommy, I'm sorry but I hate coming here." His poor mom looked at me and we just gave each other knowing smiles. At that moment, I felt the exact same way and realized that despite the hardworking and kind nurses, docs, and volunteers on the 18th floor at Lurie's hospital, after four months of spending at least three days per week there (and about 45 days total in inpatient) I felt like saying "I hate coming here too!" Here's to hoping next week or the week after we can be decreased to two days per week, SAM stays virus free, and we need fewer or no transfusions!
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