Another Week Over
It’s 10 pm on Friday and the girls are in bed. Time for the great unwinding (unraveling?) of my mind. This has been a BIG week in terms of NEWS and next steps. I haven’t heard from the living donor team about a specific surgery date, so that will be the next big announcement. I sent the coordinator an email to check in earlier today, but nothing yet. Meanwhile, we’re frantically trying to schedule Ana for another MRI.
She had an appointment with Dr. Hochberg on Tuesday and that went fairly well (except she had to have blood drawn which caused high anxiety.) This is still my undoing – Ana’s tears when she’s in pain and her fear of needles. I don’t handle it well. I wish I was more patient and serene. But I had to leave the room because Ana didn’t want me to hover over her – my stress at her being stressed was making her more stressed which in turn was making me even more stressed until my brain felt like it was being squeezed by my skull.
So anyway, Dr. Hochberg examined her and said she looked pretty good, but her stomach definitely felt larger and she thinks it’s time to have another MRI to assess tumor growth. The transplant team at Columbia also needs Ana to have an MRI performed so they can map out her portal vein before transplant. Ana needs to get an MRI under anesthesia because she is unable to hold completely still for the entire test – which means an anesthesiologist must be present for the test, which is already backlogged for outpatients (Remember back in December that the quickest way for Ana to get an MRI was to be admitted to Westchester as an inpatient, and wait around for three days to get on the anesthesiologist’s schedule). The earliest Columbia could get her on the schedule (as of today) was April 1st! To which Jim’s response was, “What the hell? Do we live in Canada?” So Maria, the amazing transplant coordinator at Columbia, is trying to get a mythical being in charge of MRI scheduling to expedite this request and get Ana seen next week.
At this point the control freak in me took over and the polite “it will all work itself out” part of my brain went dormant for an hour while I called some local medical facilities to see if Ana could get her MRI nearby. I mean, Kingston is hardly Columbia Medical Center – I can’t imagine people are lined up outside our local imaging facility waiting for their MRI. The problem with doing an MRI locally (I discovered) is that you can’t get it done under anesthesia. Not even at the local hospital.
However, I did find a facility in Kingston called Ulster Medical and Surgical Specialists. I spoke with the Chief Technician (Joe) at length and explained the situation with Ana, and that she was very reluctant to try the MRI without anesthesia. He says they specialize in doing MRIs on claustrophobic patients and has done scans on children as young as 7. He allows extra time for the test, and pulls them out of the machine whenever they need a break. He can also have Ana change position to one more comfortable if need be. He can get her in whenever we want (he said 3:00 pm today was available) or Monday – whatever we need.
He accepts my insurance, but just needs an authorization and any specific instructions for the exam (e.g., from the surgeon) which I assume would be included with the script. He can accommodate almost anything needed. Even if it turns out that this MRI can be done next week at Columbia – I think this is a good resource for after the transplant since it’s local and I’m guessing Ana will need MRI’s at least twice a year. I don’t love the idea of her having to go under anesthesia every time she needs this test.
So, I then wrote back to Maria explaining (apologetically) that I had this back up plan and she was actually very supportive. She called me and said that it was unusual for parents to be so proactive (I hope by “proactive” she doesn’t mean “controlling”). She did seem genuinely grateful that I took it upon myself to try and find an alternative, although she said that the MRI scheduling person may approve Ana and move her up to next week – we won’t know until Monday. Is this person like the soup Nazi? NO MRI FOR YOU!!
And in further health news – Ana has had an atrocious cold all week with a persistent and somewhat alarming fever. It started on Monday and went into full blown “I feel like crap” mode by Tuesday night when her fever hit 103.5 and a clump of my hair fell out from the stress of it all. I gave her Tylenol and made her take a warm bath, and the fever was 100.1 or so when she went to bed. It’s been coming back every day to as high as 101.9 – 102.5 and she is just completely exhausted. She has some sort of rash on her face which I assume is a reaction to this virus, and that, combined with her tired “fever” eyes and the massive heat radiating off of her body freaked me out enough to take her to our family physician today. The flu and strep test came back negative and everything else was all clear (ears, nose, throat, chest). She’s slowly getting better, but still getting fevers as high as 101.5 and is still very tired.
I am mentally drained from seeing her so sick. She barely made it to school this week. She barely made it off the couch! Emily, by contrast, is a complete firecracker with boundless energy. The contrast between the two of them is so stark that it’s really heart breaking. There is no denying she is an incredibly sick child. It must be so frustrating for her.
When Ana has a bad week like this, the only thing I want is for her to be well again. That’s it. That’s all I fucking want. I wish I could push time forward by sheer force of will, to when this damn tumor is gone. We have to beat the tumor – that’s what Dr. Kato said. But this thing is persistent. It’s got a mind of its own. I hate it.
And thus ends the Friday unraveling of my mind. But not before I end with at least one happy shot from our visit to the Infusion Center. Ana got a gift which she’d picked out before the holidays from a Toys R Us catalog. It was waiting for her, all wrapped and ready, when we got there.