If one can have a good day at the hospital, then we had it today. Liz woke in a much better mood than yesterday and we were very happy ( I may have screeched!!) at the fact that she gained two pounds! A great way to start our morning.
Walter came by the hospital for about 45 minutes to see his Lulu, give me time to take a shower (SO hard to do because you never know when the docs are going to round. Liz has five coming to see her each day, all at different times, and I don't want to miss them!), and hold me for a few minutes. Man, I miss getting hugs and kisses from my husband while we are two ships passing these days.
My dad had Jackson and Kate for the day and stopped by so that we could all see each other. Liz showed Kate how to do magic that nurse John has been teaching her; Jackson and I took a walk; I snuggled with my 5ft tall, ten year old volleyball-n beauty, and a few volunteers came by to make paper flowers with the kids. Such fun, right?!
After our visits and the doctors all coming and going, Liz and I headed to the garden to play cards and count butterflies. We then walked a bit (really important, as Liz is confined to her room once we are inside the building, and at 12 days, she needs to keep her body moving and lungs working!) and headed over to the Reflection Pond, where we sat soaking in the sun and watching the Koi. I told Liz we were like little lizards sitting in the sunshine taking it all in....and she did not appreciate that analogy. My little diva does not see herself as a lizard in any sense. Noted.
I am grateful for a good day, especially since the evening has brought a dip in my spirits. Honestly, it was running out of toilet paper that brought me down : )
The fact that we have been here long enough to go through a roll of toilet paper is just depressing. 12 days is so very long to be suck in this room- watching other patients come and go, nurses have days and days off, missing dates I'd had planned and circled on my calendar, and knowing we have at least five days more to go. I usually have such an easy smile for those who come and go from our room, and I am finding it more difficult to make small talk or easily smile at one's jokes.
When we were at the pond today, Liz said " We are doing a good job in here and we're almost done"
She is just so amazing and though she has her moments of anger and sadness, I cannot get over how well she is handling this.
The latest plan is this:
Tonight and tomorrow night her feeds will be cut in half (calories). If she gains weight, she will not have the PICC placed Monday, and instead she will have her counts dropped more and more, weaning her and watching to she is able to maintain and gain, by taking in calories by mouth only.
I am trying to be positive and believe that this can and will happen, but we all are not banking on it. The doctors said it is a long-shot, but we all want to spare her the PICC (and risk of infections), so we are trying to give her time to show us she can do it...if she can do it.
Last time we cut her feeds, she lost weight.....
If that happens, she will have the PICC placed at 1:00 on Monday.
Her labs show that her WBC, RBC, HCT, ANC and platelets are dropping more each time they draw blood. I was told that Immunology and Hematology are talking over it and will decide if they would like to do anything about that now. Her counts have been worse before, but they are low enough that they have gotten everyone's attention.
Missing home like crazy and praying for weight gain.....
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