Fiasco Central

Jill had a rough day yesterday. She woke up nauseous & ended up getting sick to her stomach after a few bites of breakfast....took me forever to get her anti-nausea meds because the doc was in rounds & couldn't tear herself away. We have had a different nurse every day for the past 5 days (on every shift) because we are not on chemo anymore right now & they only have so many chemo nurses to go around....they are pulling nurses from other floors, nurses who have very little to no experience working Hem/Onc. It's frustrating, for them AND for me....I feel like I have to re-explain every single thing every day....no, we don't take that orally, why? because, well, see, it's a long story....and yes, we do need a sedative for dressing changes because she FREAKS OUT when we have to do them once a week....and why doesn't she have a standing PRN order for Tylenol? Why do we have to wait 5 hours for the doctor to put an order in for her to get platelets???? We got the VERY LAST bag last night around 6 pm....they now have to order more from the Red Cross, and it will be at least 24 hours before one is ready....if she had to wait 24 hours for platelets as bad as she needed them today...her gums were bleeding, she was bruising on sneezing! It was absolutely a ridiculous day. (By the way, if you ever donate blood/platelets, try to give directly to a hospital as the Red Cross, understandably so, charges hospitals for them). So, she was feeling sick all day....sleeping a lot....and towards the end of the day, started getting low-grade fevers. By 10pm, she was really warm....but cooled down just in time to NOT have blood cultures drawn to test for bacteria. (If she gets to 101.3, they consider it a "spike" & automatically draw cultures, then start a 48-hour antibiotic, which, if tests come back positive for bacteria, turns into 14 days; if tests are negative, it's likely a virus & will just have to run its course....may take longer in kids that are "neutropenic", meaning very low WBC counts.....this is why she can't go home while "recovering"....if she spikes a fever at home, we may not be able to get her to the hospital in time to get it under control).

Okay, so she finally crashed at 12:30am Wednesday.....at 6:30 am, her nurse woke me up to tell me (as gently as she could) that they were moving the entire unit down to the 2nd floor (General Pediatrics...they had moved those kids to another wing) as they needed to start construction on our floor (we were all under the impression that this wasn't going to start until Spring). I was like, "okay", and started packing....Jill woke up right as I was finishing (mind you, we just moved 2 days ago into this room) & I carried her down while the nurses aides took the crib & a huge wagon full of our stuff. We got settled in another private room....it was big & bright, but old & ugly & there were workers on ladders right outside our door working on something in the ceiling....dust was flying everywhere....the nurses seemed pretty concerned about this..."Let's close your door".....the filtration system on this floor is not as efficient as the one on 3rd.....we were all worried about that. The reason the Hem/Onc (Hematology/Oncology) kids are isolated on that unit is due to the HEPA Filtration System.....she was now going to have to wear a mask when in the hallway or playroom because the hallway isn't filtered. Makes no sense. Those silly masks don't even FIT her. What's the point? And now, her much anticipated playtime sessions were going to be cut from 2 to 1 so that General Peds & Hem/Onc kids could have dedicated sessions, with maximal cleaning by volunteers we don't have yet going on between sessions! So, as I'm putting all of our stuff in drawers, closets, cabinets and pondering things I cannot change, the nurse walks in & says, "Man, I wish you weren't so efficient (implying that I unpacked prematurely). We're moving back upstairs." Apparently, the doctors were not fully aware of this move & were livid that it was happening. They were adamant our kids weren't completely safe down there, so they shlepped us all back upstairs.

Soon after this ruckus, Jill spiked a fever, for real. She is now on antibiotics & Tylenol....Matt is with her (he is mostly over his cold, but not completely....I needed to get outta there for a night & see my favorite soon-to-be 4 year old, who called me "stupid" & said she didn't want to be my friend because I was walking behind her down the hall & she wanted me to walk in front of her....she yelled in my face & I nearly whacked her.....ooooooo. I'm running outta "what'sa matter honey?" I gave her a good "talking to" & she broke down & sobbed, "I want my Daddy, and my sister & my mommy all at the same time!" Man, this is TAXING. One can break into little pieces over such madness. I fear I am headed for the cliff sometimes, I swear.

I really need to get some sleep.....a lot of wonderfully special things have also happened in the past few days....I will share these in my next entry. I promise the next one to be more uplifting!

My thanks & PRAISE for the Garage Sale Committee.....this thing has taken off in such a big way! You are all so dedicated & amazing. I hope you know how much we love you & I wish I could help more!! I will be there Sat morning. Can't wait.

Cousin Jessie, for the "Jellybeans for Jillybean" campaign in St. Louis....putting cans out at various restaurants & her hospital where she is a nurse.....over $500 was raised in just under 2 months time. We are stunned. Thank you Fam!!!

Immediate thanks (and then I really need to crash) to Shaana the RaceCar Driver, Dina/Jim, Jannah/John, Kristi/Ian, Lisa & Michelle for being on call all week to take care of Anna & stay with Jill so we can have a rest....or a much anticipated DATE (please pray for nobody being sick on Friday!).

Oh, and Cousin Kev......get your flu shot, and wear a gas mask on the airplane. I'm serious. If you get sick, we're sending you home & putting a moratorium on any "by-flight" visitors. Poor Mary was sicker than a dog, and ended up going home 4 days early!! It's unavoidable and no one's fault, but such a complete bummer. As is 6:00 am, which is FAST approaching. I'd wish for more hours in a day, but that would just draw this whole cancer-thing out, so time.....FLY!