Saturday, May 14, 2016

Apartment Life, Day 28 Test, and C-diff.

The task sounds simple. Come live in Denver, in a posh apartment with your 14 year old daughter and just take care of her. She mostly wants to just sit in her bed and watch Chopped, or River Monsters episodes so you would think it would be fairly easy. I thought I might even get some work done while I'm here. Abby watches movies, I work and the girls get some quality time with Tiffany in Fort Collins... 

But things don't always match up with my delusions of future realities.

The truth is that living 5 minutes from the hospital is kind of like being at the hospital but without all of the help. We get to be a nurse, cook and housekeeper and more. I'm not complaining (much) because I do get to get a full 6 hours of sleep without any beeping or people coming into the room to check on me. But to have those full 6 hours, I also get to clean, give meds, and be a short order cook. I don't think I'll be changing to any of those careers anytime soon.

To top off the normal workload around here, Abby now has C-diff again ;(  So, I'm trying to keep her hydrated and out of the hospital. If she can drink enough, keep food down, and keep the fevers away, we can stay here. She is a trooper and really does take this all seriously. She drinks when I tell her to, even is she isn't feeling well. Pray that her nausea will go away soon though, that would make things much easier.

On the trooper note, Abby really is a pretty amazing kid. I know I'm biased, but to me she really does embody the verse in Philippians, "Do all things without complaining or arguing". Sure she has her moments, but it is relatively easy to turn her around. I listen to her pain with a sympathetic ear, and then call her back into the trenches... and she does it with that big Abby smile that we all know. It's crazy to me. I'm struggling just being at the apartment alone for just a few day and I don't even have to take all of the meds that I give her!  So, she's a trooper, point made.

Oh ya, she also had a minor surgery/procedure on Thursday too.  It seems so weird that these have become some normal that I forget to post about them.

Thursday was her day 28 bone marrow test. She's still pretty sore from it so I don't know what all they took to test but it was not the norm. They will be checking for 3 things. Chimerism, how full the marrow is as it starts to repopulate, and if they detect any cancer still (the MRD test). I think we'll have some of the results back late next week or so.

Oh ya, and Lily and Anna are fighting colds (Tiffany maybe too) so they can't visit until they are symptom free. I asked the BMT nurses if they could come and visit just in case... they said no. I understand, we want to keep Abby healthy too so we will keep on keeping on! Probably don't wat to expose the girls to C-diff anyway. Hopefully that little pesky gut-bug will go away and stay away too. Please pray for that.

Here's some pics of life in the apartment.

Tuesday, May 10, 2016

What to do in Denver

Well, a lot of people have asked me, "What do you do in Denver now that you are out of the hospital?"... well, ok, just one person asked me but I though it was a good question so here's the answer.

We clean, we give meds, we make sure Abby is drinking enough water and cook her meals... and try to tiptoe quietly (we had a visit from our downstairs neighbors) sorry ladies, I forgot that the wood floors might make it kind of loud below ;)

Here's a time-lapse of our cleaning the main room this afternoon. I knew having the girls around would be helpful! And yes, I did make Lily help clean even though it was her birthday. Double digits the big Ten-O. Happy birthday Lily, and thanks for the help!

Abby is doing pretty good, she had that allergic reaction in the clinic yesterday but Benadryl is a pretty magical substance and she can now move her mouth again. That was weird reaction. She's never had any other reactions like this before, but since the transplant she's had 2 reactions. I need to ask if for some reason Anna might be allergic to these drugs too since it's now kind of her immunity living inside of Abby. Crazy huh?!

Tonights agenda includes a cake (provided by Brent's Place), present opening, and lots of meds for Abby. Just a typical birthday celebration right? Well, it's typical for us anyway and we all are together for Lily's birthday. That, right there, is celebration enough!

Monday, May 09, 2016

Week One in the New Digs

So I'm sitting in an infusion room at the clinic with Abby while she sleeps off an allergic reaction to her new weekly IV antibiotic.  She was almost finished with the hour-long infusion when her lips froze up and started feeling numb.  I grabbed the first person I could, which happened to be our BMT doctor who was walking by.  We got her pump turned off and IV Benadryl administered and after some shaking chills in addition to the mouth thing she was out.  That was an hour ago.  Poor kid.  She was mid-bite into a tortilla chip with salsa when it happened.  I thought she had hit a jalapeno and offered her water.  She couldn't answer because her mouth had frozen.  It was pretty nerve-wracking. She'll wake up soon and we'll head back to the new digs, a two-bedroom apartment behind the hospital.  We spent the weekend there as a family and it was bitter-sweet.  Sweet to be together, to have Abby out of the hopsital, to have Mother's Day together.  Bitter because Anna and Lily could go in the big hot tub and Abby can't, we have cleaning and meds and IV fluids daily that take a lot of time and energy, and we had to say goodbye to my folks Friday night as well as each other at the end of the weekend.   That's the quick update.  We are so very glad Abby is out of the hospital and doing so well.