Today was a hard day!! I think mostly because I was ready for a break. We had to move rooms because they needed ours in the Oncology ICU for a more fragile patient. We were actually moved out to the regular oncology unit. Thankfully we still have our own room but it is MUCH SMALLER!! This is where I start to feel as though I am whining. Believe me, more than anything, I am so thankful that we do not have to share a room because I can't imagine having to do so. For example, my little Angel likes to stay up until midnight as she seems to get her second wind then. When I finally say lights out and climb in bed myself, she cries until she finally gives up and falls asleep. Usually it is only for a few minutes but last night, it was for an hour. Finally at 1 am, I gave in and gave her another bottle and she was finally OUT!! How would you like to be roommates with a kid like that???? So again, I am very thankful for our own room, even though it is smaller. It is just that basically, we had been spoiled and didn't realize it. All we knew was our big room and you know how hard it is to downsize. As I packed up all of our things, I couldn't believe how much we have accumulated this past 3 1/2 weeks. I couldn't imagine where we would put everything in our new, smaller room. Ella did not take well to the transition. They wheeled her to her new room in her crib and she screamed the whole way. Then my mom arrived to relieve me as we were getting in to our new room and I think that Ella sensed that I was leaving. So here we are with a crying kid, piles of things in our new room and me quickly trying to find some sort of order before I have to head out to get home in time to pick the other kids up from school...not a fun day but at least I get to be home tonight in my own bed!!
The other reason that today was hard is that Ella's blood count went down again. Since my last post, Ella was at O and then the last few days her neutrophil counts (immune system) had been steadily going up. So much so that the Dr. told us not to do too much unpacking as we may get to go home in the next few days. Not 5 minutes later, he came in and said that today's blood count had come back and her counts were back to O!!! It is completely normal for them to do this but we were really hoping that we were on the upward climb. The good news is that she is making her own platelets and hemoglobin as those numbers are climbing on their own so we know that the bone marrow is working in the right direction. We just have to continue to be patient and play the numbers game.
Ella continues to appear to feel really good. She is starting to become really mischievious again. When she is in her crib and suppose to be falling asleep, she plays with all the important cords on the wall, knocks the phone off the shelf, tries to tamper with her IV pole...you name it, she gets her hands on it. She has been full of smiles for all the staff as they come in. We haven't left her room in over a week ever since her counts bottomed out but last night when the nurse was weighing her, she had the door open and Ella was sitting on the baby scale right inside the doorway. I think she was in heaven!! She was able to wave and talk to the people who walked by and loved it!! I felt bad because I know she wanted to go out but the little stinker won't keep a mask on for anything....so no go!!
Here are a few pictures from the past few days. As you can imagine there isn't a lot to take pictures of, but I try.
I gave Ella a haircut so that the shedding didn't seem so
extreme.....this was her first haircut EVER and the first
time I have ever cut any of my kids hair. Here is the
And the back.....
Here is a before picture showing the length
of her hair before :(
Special Education kiddos in the school district. She loves
to get her hands on Ella whenever possible. Ella didn't
think that she should have to work out during the holiday
weekend, but Debbie had other plans!!
I thnk she had fun though...don't you???
Cute little doggy that they bring around to visit the kids.
It took Ella a bit to want to touch her but eventually
really enjoyed it.
I knew that when we went home in between
rounds that I would have to take down Ella's
photo wall. In fact I had already decided that I woul
put it on poster board during our break so it would be
real easy to put up each time. Unfortunately, with our room
change, I had to take it down prematurely! But here it
is so far....(minus the few pics I received since I have been
at the hospital or a few that need to be printed off the computer). I can't
tell you what joy I get just looking at all these faces...they seriously
brighten my day...everyday!!
A few of our nurses have this cool button and I wanted to take
a picture of it so I can try to find one for myself...I think
it sums up my feelings perfectly!!!