Consults with the ENT (Ear, Nose, Throat), ID (Infectious Disease), and psychiatrist today (not to mention the meeting with Mr. Bow Tie who talks to us like we're really stupid).
The result: surgery tomorrow, a gum and cheek biopsy. They will then attempt to determine if her ongoing infection is viral, bacterial, or fungal. She's had it quite a while for it to be viral. All the antibiotics should have gotten it or at least improved it if it were bacterial, so the fear is that it is fungal. However, no culture to date has grown anything bacterial or fungal. ????? Fungal could be really bad news, somewhere between really bad and really, REALLY BAD. No one wanted to talk about worse case scenario, including us. The results could be back between a few hours and three weeks. Bottom line: they are starting her on the serious anti-fungal "shake and bake" tomorrow or Sunday after the procedure. Her primary hematology doc told us the new form (which they will use) has no side effects (why, you might ask, then did he plan 10 days ago to use the old form? We have no idea). No matter, the doc who saw her today "respectfully disagreed with his colleague and said the new form has some slight improvement in some kids, but that we should still expect some serious side effects, including possible kidney damage. All of this to fight an undocumented infection, but a valid treatment all agree at this point given the mystery and potential risk of letting a fungal infection go. We are hoping that if it is fungal, it hasn't yet spread into her blood or bone (the fact that a culture hasn't shown it gives some hope that this might be the case).
She had a platelet transfusion yesterday and her platelet count this morning was only 31, up from 3. I was alarmed and again asked about HLA matched donors. I was told it would be available "next time." I told the doctor that I meant no disrespect but I didn't believe him as this was the fourth time I'd been told that. He said it couldn't be helped. Arranging the single donor platelets was a logistical challenge. The ones they'd found were in El Paso and someplace else and it would take time to get them here. We didn't have time as she was having surgery tomorrow and had to have a higher count. I advised that if it took two days to get them here, why not order them now so she could have them Monday. He argued that she might not need them Monday. I said, "Isn't the shelf life at least several days?" "Nine," he said. "Is there anyone who doubts that this child will need a transfusion in the next 11 days?" I asked. He said, "Has she been getting them that often?" (guess he didn't read the two pages of notes). I told him that she'd been getting 1-2 a week, had gotten one yesterday, again today, and would get 1 or more tomorrow. It's a no brainer! He called me back to say that he'd only gotten a recording so he doubted on a Friday, leaving a message, that we'd have platelets on Monday. I thanked him for at least initiating it and he said there was no real evidence that showed they helped "that much." I pointed out what I thought were the obvious benefits and he said, "Well, true in a perfect world these kids would have single donor matched platelets and blood." I hung up and started crying about that perfect world comment. I wanted to say, "Would you go to the trouble for your child?" Here I am being demanding, wanting a perfect world for my child who is fighting every day for her life! He had come back to the room earlier in the day and, telling me about the surgery Saturday, said, "This would the best I can do for you." I said, "Excuse me?" He repeated it, and I told him I didn't understand (he already thought I was stupid so this didn't come as a surprise). I asked if he meant her finally seeing an ENT later that day and getting the surgery tomorrow was the best case scenario, but might not happen? He said no it would happen, but that it was the best he could do for me (as I had wanted her to have something done to her in her first 48 hours in the hospital that we couldn't do at home.) I pointed to Kinsey and said, "You mean her, right?" He looked puzzled. I said, "The best you can do for her." I only want what is best for her, which is what I thought you wanted to. I wasn't asking for a favor, just the medical treatment she needs to potentially save her life, you know, when it's convenient.
Okay, you can tell I'm bitter. I am tired of doctors who work on the same team "respectively disagreeing" about critical issues and not communicating others. I am tired of no one figuring out what Kinsey calls, "The Mystery of the Swollen Jaw" and "The Mystery of the Fever." I am tired of seeing my sweet little child decline each day in new ways, physically and emotionally. I am tired of no improvement. And I am tired of living in a little, depressing, dirty room with paint peeling off the walls and floors. Last night I rang the nurse's bell as I have so many times when her IV machine dings (they can't hear it from the nurses station and it can go on for what seems like hours). I said, "They never come and I always have to get up and go find them." Kinsey said, "Mommy, none of those nurses buttons work, not in any of the rooms!" I said, "Really? I just thought the lights were all burned out." She laughed at me. The nurse confirmed Kinsey's assessment saying, "Oh no, those are too fancy for this old hospital. She did, however, give me a nurse ringer that "worked." The only positive thing about my visit with Dr. Bow Tie today was that the entire time he was in the room, the bell dinged. He asked me twice, "Did you call for the nurse?" Then he pushed the call button. Then he got up and pushed it four more times. Night fell, and just as he was leaving a nurse came. I am not blaming the nurses. We had a wonderful nurse today who worked 17 hours straight. She, too, has a broviac for cancer treatment and is great with Kinsey. I'm not even sure who I am blaming, the doctors, the HMO's, the hospitals??? Like Kinsey, I just want to blame someone and wish it were all that simple.
During the midst of this awful day, two good friends from work came by and I thank them for their kind words and sincere sympathy. They brought us a huge bundle of paper towels, several Clorox wipes containers, a case of apple juice, and a huge, HUGE box of straws! Thank you!!! I know when some of you call or visit, you feel like you catch us at a bad time. It's true you often do because we have so few "good" times these days, but we always appreciate it, even when it's brief and harried. Thank you all for hanging in there with us as we continue through this horrible journey. We need more support than we've ever needed and certainly way more than we ever wanted to need.
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