March 22, 2012: Back on the 8th floor
by Georgia
I intended to write a post today about all of my parenting insecurities in the context of having a cancer kid (so many insecurities!), but lucky for you, we are at clinic instead!
On Monday, Dr. Parikh told us that Elsa has a double ear infection but that it looked like it was resolving. Guess not. We came in with a fever of 102.3 to have her ANC checked. If it’s under 500, we’ll be admitted. Thankfully though, it is still the ear infection! He says her ears look awful, so at least we know the source of the infection. Most admissions, there is some question in the back of my mind that maybe, just maybe, it’s a port infection (one of the worst possible things). We’ll take double ear infections any day!
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It’s now 7:00 and we are snuggled into our new, fancy hotel room here at Chez CCMC. ANC was 160 so we can plan to be here a couple of days, at least. They think her counts will probably drop lower before they rise over the magical 200 that sets us free.
As I sat down to write this, I have to say that I was bizzarely, deliriously happy when we arrived on the floor. The misery of our last hospital admission has taught us to be thankful [very, very thankful] to NOT be on isolation and sick ourselves. I’m not totally sure how we survived that last admission in one piece. Actually, you know what? Those kinds of, “I dont know how we did it” statements are really just bullshit because if cancer teaches you something (well, it teaches you many things), it teaches you that you WILL handle whatever it is that barrels in your direction. Still, our last admission was surely our worst thus far.
Now though, we have a hundred things to be happy about! This last week has been rough because she has been miserable fighting the ear infection and I have been so on edge, just waiting for this admission. I was so tired of obsessively checking her temperature, waiting for the fever. It was almost a relief to see the 102 and know that, finally, I could stop anticipating with dread. Plus, now that we are here, they gave us the biggest, most comfortable room on the floor that has a set of double doors to block out the noise from the nurse’s station. We are not on isolation and are free to roam the halls and use the family kitchen and playroom. Even the IV pole is great! They gave us one that has a little platform attached to it where I can rest my coffee in the morning as we make our morning rounds of the floor. Luxury! This is all so luxurious!
Ah see. . . Perhaps I should not have sat down to write. As I write, familiar feelings are creeping in to visit. Feelings like, “I shouldn’t write that things are going well. That’s such a risky move,” and “Her counts are so low that NOW, she is at risk for a port infection. Tomorrow could bring disaster.” “Don’t write anything down so that your future self doesn’t look back and wonder at your naivete.”
I’m sure I’ve said something like this before, but I sometimes feel like I’m in an empty, padded cell, yelling and batting invisible, threatening shadows. I plead, “I know it could get worse! I know! Please, please, please let THIS be the worst part.” I think I’ve gotten pretty good at snuffing these feelings out – but when I’m least expecting it, and especially when we are inpatient, my mind always wanders to the same place. I see her up in the ICU with a thousand clear tubes shuttling fluids and air in and out of her tiny body. The screaming in my head is deafening. I’m not totally sure how to snuff that out completely.
Oh gosh. Enough! We have an IV pole with a little stand attached and, in the morning, I will rest my coffee there as we walk the halls. Right? Yes.
Our day in the usual 1,000 pictures:
Dark-circled little worrywart:
Worrywart gets examined – though I’m proud to say she is generally pretty easy-going with this stuff as long as we follow a couple of her rules.
If I were to look back in my posts, I think I could find this exact same photo, wearing the exact same jammies!
For a little change of pace, we ventured down the hall to the 8th floor waiting room to eat some goldfish with Baby Dollie (really original name, I know).
Trick of the trade: Whenever admitted to the hospital, BRING PILLOWS! As many as you can stand to carry.
Goodnight!
Georgia,
Your posts always hit so close to home for me! I can totally appreciate the ‘luxury’ of letting the doctors take control and relieve you of your fever watch duties. And the part about feeling guilty for being ok with being there. More than ok even!!
Just want to say either we are both nuts or what you feel is normal. How else could you possibly feel in this situation?? I can’t say anything that would change it or make it easier for you but I can say I totally get it.
The pics are adorable!! You’ve reminded me to take more pics although I can’t imagine I’ll ever take one a day. But Emma won’t stand for it so it’s not going well. One day I’ll look back and say ‘how come every shot of her at that age is of her grimacing and throwing her hand up in front of her face?’ lol Oh well, that’ll have to do.
Hope the ear infections clear up and that your hospital stay is smooth and quick!
I am relieved you are there…I know that it will help you worry a bit less. I wonder EVERY time we go to the hospital “why the lack of invention?” Pediatric IV poles should all have a little kid seat, and cup holders. I have tugged, stepped on, yanked, etc on Eli’s line so many times because we get out of sync. (mostly because I am trying to balance a cup of tea, and open doors at the same time while holding pole.) That is why he stands on the pole base now. I always picture him in an elevator, and me in the hall struggling to get the dang pole in…and the door shutting. AHHHH. Next – IV tylenol please. Next – port cleaner that does not smell like rancid cheese/alcohol which always literally makes him gag. Next – port flush that does not choke the majority of kids under 13. Or a mouth tablet to negate the chemical taste – again – see “gag” comment above!
You are so smart to bring your own pillows. Glad you got the “big” room. Heal up!
gill
Hi Georgia, Its been a sometime since I’ve checked in to let you know that Elsa and your family are in my thoughts and prayers. I always read your posts but don’t always comment because what I want to say seems trite with the magnitude of what all of you are going through. I am amazed and so proud of your strength and fortitude. Also I think its ok to go in that empty padded cell and scream and rant and get it out. Please give Elsa a kiss and hug from Aunt Karen
Sorry you guys are back in. I hope that when you read this things are still going well and you’re keeping the inner voices at bay.
You guys got this! Go team Burmanetti!
I don’t know if I read this on your blog or elsewhere, but someone said “The brain is a wonderful servant but a cruel master.” The internet is saying it’s from Lord of the Rings, so maybe Samwise Gamgee said it. Probably. He was like “Goddamn Frodo, let’s just go back to the Shire already.” But Frodo had to put that ring in the fires of Mt. Doom. It took a really long time, and it pretty much sucked, but he did it. So you are Frodo and Cancer is the Ring (or maybe Gollum?) and I can be the Scottish dwarf or maybe the elf with awesome hair (NOT stupid Orlando Bloom though). Anyway, you are going to put that Satanic ring in the fire!!!!!!!!!!!!! YOU’VE TREKKED 244 DAYS THROUGH MIDDLE EARTH AND YOU WILL GET TO THE MOUNTAIN! And the next thing you know you’ll be bringing her to the hospital not because of ALL, but because she challenged someone to a dance contest and broke her wrist trying to do the worm.
Sorry, this is totally inappropriate. But I figure you’re sitting in a hospital room feeling really bored and perhaps kind of sad, and maybe this would cheer you up. Or end our friendship. It’s a toss-up.
It’s said parents do their best, but not all parents are asked to be this great. You are just as heroic as Frodo, and that’s basically the biggest compliment I’ve got. Love you.
At least we have avoided Shelob’s Lair (I could make obscure Lord of the Ring’s comments all day!)
I always welcome totally inappropriate. You always tell me, so now I will throw it back at you: Never apologize! I am indeed very bored and kind of sad and it did cheer me up
The good news…people from many places are holding Elsa in their thoughts and prayers and wishing all y’all the best. My granddaughter’s school called Tuesday and the school nurse said she (age 5) had an ear infection. I’d say on a scale of 10 she was in pain an 8…so I can hardly imagine a DOUBLE INFECTION! I’m thrilled you have great medical care that will get Elsa back on the road to recovery. I am glad to see she has her Dora pillow for comfort. Hope she gets to take it home soon!
Hi Lynetta – nice to know you are here and reading and keeping Elsa in your thoughts. Hope you are well!
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