Getting my update in early today-- Matt reports that Mollie's temp went up and down all night long, but WBCs are up to 0.7 with an ANC of 550 (above the 500 mark- yay!) and her lungs sound good according to Dr. Vega.
Today, she will get a dressing change and they will also change the needle in her port. None of us are looking forward to that, but I know she can handle it. Plus, she'll get another neupogen shot. This definitely calls for something from the present box- it's almost empty after all she's been through recently.
Also on the menu for today are a bunch of phone calls (& probably visits) to our other doctors. Lucy and I are both considered "high risk" for H1N1. My OB just got doses of the vaccine on Monday, so she will probably recommend I get mine and start me on Tamiflu. Lucy's ped doesn't have the vaccine, but may start her on Tamiflu as well and send us on a wild goose chase to find vaccine for her (she is supposed to get the shot, not the mist b/c it is live attenuated). And then Matt will also have to talk to his GP. This is when I wish "family-centered care" actually meant medical care for the whole family. We've been getting little sleep as it is, and now we have to run around and deal with this. I think I might be feeling symptomatic already (although I might just be tired).
Mollie will also get a red blood cell transfusion today. Now that they know the cause of her illness, they will give her the blood to improve/maintain her oxygen transport and just generally to help her feel better. Her hemoglobin has been low for over a week now, so this should really help. At the moment, she is very happy. She is disconnected from everything- no tubes, monitors, needles, etc. and her temperature is only slightly elevated.
Worst port access ever. We had to hold down her arms and legs and they stuck her 3 times! But she's doing better now. Unfortunately the neupogen shot is coming in a few minutes. Fever is still down and she's coloring and working on some school work. We tracked down Tamiflu for the rest of the family and Lucy and I are going to get our H1N1 shots this afternoon.
Hi from the Shannon Family,
ReplyDeleteWe like to hear Mollie's ANC is up. Hang in there and were thinking about you all. Take care. Karen
I am so glad to hear there is some improvement. She's a fighter! Please let her know we are all thinking about her!
ReplyDeleteMrs. Swenson
SO glad to hear they've finally figured out the cause of the fevers! Hope you guys can go home soon. Good Luck with the doctors visits and flu shot scavenger hunt. Thinking of you guys - Jeanene
ReplyDeletestill thinking of you.
ReplyDeleteglad the ANC is up and that sucks about the port access.
is lucy high risk for H1N1 because of age? what about mollie getting it?
our offices still don't have vaccines for it, but both kids got the regular flu shot before they ran out. mike and i haven't had it. different supply levels around the country. i have heard some people have had no trouble getting either shot.
We're thrilled to read that the numbers are moving in the right direction! You all are fighters down there- take care of yourselves and hopefully Mollie will be out of the hospital soon.
ReplyDeleteLove, DC Kings
Boo for the port access but Yay for the Tamiflu and vaccines - Jeanene
ReplyDelete10/28 4:15pm
ReplyDeleteMollie's RBC transfusion has been going for about an hour and a half and she is perking up. She slept for the first hour or so and now has woken up with an appetite, good sign.
Dr V came by and said the chest x-ray they did this morning indicated to him an area in Mollie's left lung that is of some concern. To be thorough, he is starting her on a 5 day cycle of Zithromax (an antibiotic). Another antibiotic!
Anyway, we are still waiting on her fever to break once and for all. I think at that point Sarah and I will breathe a little more easily. We are reassured that the issue seems to be pinpointed, and that the correct course of treatment has been prescribed. But at the end of the day the fever still has not quit. Hopefully the Tamiflu will kick in asap.
Goodness! Can't imagine the rollercoaster you've all been through-- emotionally and intellectually. Mollie's lucky to have the hard science understanding in her inner circle support groupl Glad there seems to be a light at the end of the tunnel, but we're still crossing our fingers and saying our prayers that the path is all it seems!
ReplyDeleteMCG has H1N1 vaccine at family medicine. My wife just got it there yesterday.
ReplyDelete10/29 9am
ReplyDeleteNot much change from yesterday around this time. Mollie's fever was up and down again all night last night, and hit 40.1 C at 645 this morning. I wish there was better news on that front.
Her counts are continuing slowly to rebound. WBC is 0.8 today, HgB is 9.7 and platelets are 76. The neupogen and RBC transfusion yesterday obviously helped.