Well, the news today is neutral or good, depending on how you look at it. I am thinking positive...
Mollie's counts are up a little bit (not statistically different than yesterday, but ALL the numbers are up slightly). WBC = 0.4 (no appreciable ANC), Hgb 8.4, and PLT 76. So, the plan is to do continue on the same course. If we can't get the fevers to stop, then they will probably start considering that this might be a fungal infection. That could be very serious, so we're really hoping those numbers come up and the fever doesn't!
My goal for the day is to wash Mollie's hair. She is very, very protective of her port and won't consider letting us hep lock it and tape it up so she can bathe. The hair washing will probably take place in the sink- but I think it will make her feel better!
Update: Mollie spiked a very high fever around noon today. It came down with Tylenol and she has been slightly above her normal temp all day. We had a nice visit from her teacher, Mrs. S. It was a good distraction for both of us and Mollie perked up and was very talkative after getting the tylenol. She has spent the rest of the afternoon watching netflix on my laptop. In my opinion, she's just not feeling as well today as she was yesterday, although she says she's just more bored. And I still haven't been able to wash her hair (although the boo-eauty salon is a great idea).
Hi Mollie and family,
ReplyDeleteI hope everything keeps improving. It seems to be slow progress. Please feel free to call anytime. I won't call you (in the short term) just to keep the "noise" down. BTW "noise" is an old engineering term denoting useless interference!
Mollie, keep your spirits up. The same goes for Matt & Sarah. I don't think I need to say that for Miss Lu. I suspect she is bouncing off the walls.
I don't know about you Mollie, but I always feel better after I wash my hair. I was sick for 2 days and as soon as I washed my hair after that I felt much better.
Wishing you wellness!
I love you.
Mollie, do you still like Oscar?
Hair washing in the sink? Is the sink near the haunted house that Mollie is creating? Maybe it will be a trip to the Boo-eauty Salon ;) Sorry to hear that pesky fever is still hanging around! Thinking about you all a lot.
ReplyDeleteHey Sarah,
ReplyDeleteGot Mollie some crafts. One of the crafts is Pixos. First, didn't realize this is from the same company that had the recalled Aquadots. Supposedly, the product has undergone some pretty rigorous testing. Bella is chomping to get started and make some sun catchers. Anyway, the product can't be used because the kit comes with everything but the pen (I hate that) so I have to go out and buy pens for the product to work. So, do you (or any of your friends monitoring the blog) have any thoughts about Pixos before I go buy the pens?
Keeping you in our thoughts and prayers.
Michelle
I agree on the hair wash, always makes me feel so much better when i'm sicky - love, love the bo-eauty salon idea! If that won't make her wash her hair i'm not sure what will! Is it painful to cap the port to bathe? A nice bubble bath always does the trick for me too.
ReplyDeleteSending more positive vibes in that direction, hope you and Matt and Lucy are hanging in there, getting a break now and then and are doing okay.
Uncle Sam said, "I did that for Mollie" when he finished yesterday's marathon and maybe got a little misty. Hope FIL can help you get a little break! Also hope there's nothing fungal in Mollie-- we're saying our prayers and crossing our fingers!
ReplyDeleteMan, I am definitely praying for you guys! I really hope Mollie is all better very soon.
ReplyDelete10/26 830am
ReplyDeleteMollie had a very difficult night last night. Her fever ran all the way up to 39.4 C just after midnight, and it took three doses of tylenol, at 1230, 3 and 430 am to turn it back down to 37.9 C, as of 6am. At 8am it was still down, to 37.4 C. This is the only small bit of good news at this point.
Dr V (the new attending) came by earlier and Mollie's counts are slightly down from yesterday. She still has very low white counts, no measurable ANC, and is neutropenic. Several versions of plan B are under consideration right now.
They may begin treating Mollie for a fungal infection. We have been told that this involves some significant side effects, but have not gotten into specifics although Sarah researched it and has a good idea. Mollie may get neupogen shots to boost her white cell count - she has had these before and responded well (aside from loathing the shot itself). She may get a CT scan to further evaluate her sinuses and clarify the possibility of whether this is a sinusitis of some sort. She may be tested for the flu, although this would require that she be moved outside the forced airflow isolation ward and therefore isnt likely due to her neutropenic condition. She may receive an IgG infusion as we mentioned before. She may receive a blood transfusion to boost her red cell count. They may for now simply continue status quo (clindamycin and cefepime antibiotics), in the hopes that whatever this is resolves that way. We will know soon enough what seems to be the best course to follow and get busy following it.
For her part, Mollie is fighting a courageous battle against something that is nasty as can be. Whatever this infection is has withstood 6 days and counting of powerful antibiotics. Mollie understands very well what is going on and is willing to do whatever is asked of her. She takes medicine without protest, allows the doctors and nurses to examine her, take her blood pressure and temp etc, and her only complaint has been that she is bored (surprise). We are confident that despite the lack of positive news today that Mollie has the will and determination to beat whatever is attacking her and get the heck out of here. It just may take some time.