Wednesday, April 9, 2008

The Fight Continues....

Okay, so Jill's fever has not completely gone away has gone up and down, but never gotten below 99 (and that was only a few times...always on Tylenol and another fever-reducing drug, Trilisite). The Infectious Disease docs have been consulting with Matt...they want to run tests tomorrow (a CT Scan & MRI among some other bloodwork) to determine if she has a fungal infection somewhere as she does not seem to be responding to the Vancomycin. Just to fill you in, she has been taking 3 antibiotics, orally, every day (or just about) since Oct 4th (Penicillin, Diflucan, and Bactrim). She also has antibiotic eye drops while on chemo and a stool softener when she needs it. When she gets a fever, they immediately start her on 3 new (and hard on the kidneys/liver) antibiotics by IV (Cefapime, Tobramycin, and Vancomycin). She sucked some of the top layer of skin off her thumb over the last few days (yep, she's still a thumb sucker...and we do NOTHING to discourage it as it's one of her few comforts). The docs said that it probably is worse than it looks as with no WBCs, the skin won't get swollen and red like it should. So, they've started her on a 6th antibiotic (they stop the Penicillin when she goes on the IV antibiotics) called Flagyl to fight fungus as a preventative measure. They will start her on a 7th IV antibiotic if her tests come back showing a fungal infection somewhere in her body (this one is VERY hard on the kidneys, which is why they will wait for the tests to come back positive). She has had pretty bad tummy issues since starting all of these drugs (#1 side effect of antibiotics). She is on fluids, including some dextrose (sugar) and will be starting to get boluses of nutrition through her IV as she refuses to eat. Despite a burst of energy or two in the past few days, she has been down most of today. She perked up a little around 6pm for a bit right after receiving Trilisite (Matt has talked the doctor into writing a more liberal order for this drug as its administration has preceded her "good moments" and the doctor seems to think that its side effects are not too bad). Please please please keep her in your thoughts and prayers. We are very worried about her right now.

The move went smoothly. I don't think Matt had to do too much (but pack everything into 2 big suitcases...and care for a very sick baby for 6 full days on his OWN....God, I love you). He reports that our new (private) room (thanks, Jill) is spacious and "beautiful" (how backwards is our perspective these days if we're referring to a hospital room as "beautiful"????). It has lots of windows and overlooks a pretty garden. I hope Jillian appreciates being able to see the sky.

I miss her like you would not believe. I will go to the doctor on Friday, even though I'm sure she will tell me, "Yep, you have a sore with it"....but I want to make sure it's not strep just in case. I want to go back there so badly.....I actually miss being there. I'm starting to forget her face!

Anna is doing wonderful. She misses Daddy (constantly reminding me that, though she loves me too, she loves Daddy more because "he's just so CUTE"...honestly, she has the biggest crush on him!!), but we've been having a really good time. I'm so much more relaxed not having anything to do!!!! Trust me, I've gotten a lot done with the time I've had here, but I'm not stressed about it. These are projects that have been sitting for 6 rush to finish them. Yet I am. I need to stop watching tv, though....that's holding me back. (I'm addicted to reality tv....have you seen the "Bad Girls Club" on Oxygen? What a complete waste of time!! I LOVE it!!). If anyone has "The Good Earth" or whatever that Oprah book is and wouldn't mind lending it to me, I'd love to borrow it. I will try & borrow it from the library, but am pretty sure there's a waiting list a mile long. Thank you Dina for taking Anna all day Thursday...she had so much fun with her best boyfriend James, as usual. Renee, thanks again for the lasagna....I shared it with Dina & my neighbor Karen last night and everyone raved! And Jannah/John/Barb, thanks for taking Anna to Legoland today (the hours of absolute freedom were--still are--so precious). Barb, thanks for buying the girls pink swords. Give 'em weapons and go home....that's what Grandmas do best (hee hee). I'm taking Anna to the Discovery Science Center tomorrow. I'm sure we'll have a blast.....I'm getting over the guilty feeling.....but I still miss my baby.

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