Boring Day

This morning when Dr. T. came in she announced today was going to be a boring day. Three cheers to that I say. Again we had to focus on getting her up and moving. The doctor was thrilled with her lab results. WBCs back down to 10, platelets 17, but all her own and Hgb 6.7. Very low but she looked good and Dr. T. wasn't quite ready to transfuse yet. She also had more results from the bone marrow biopsy. Her "type" of ALL is pre-B cell ALL. 

We had a good night last night. She was soaked in the night so we had to wait out a linen change which annoyed her but she wasn't beyond reasoning with. In the morning she pretty promptly shoved her mask off. I decided to see how she'd do without it, fortunately she was mask free all day! Except for when she snoozed.

I forced her out of our room for a walk, which since she only made it about three feet turned into a ride. She protested loudly most of the ride. I'm sure her fellow patients really enjoyed that.

It took me all morning but I was able to feed her a good amount. I had to sneak bites in when she was distracted. Incidently one of the side effects to one of (the many) meds she's on is irritability. My question is what if the patient was already irritable?

Granny came for another visit and we were able to get her out for another wagon ride. This time her protests weren't as loud or frequent. Granny is pretty good at distracting, both of us.

The afternoon was just what it was supposed to be, boring. And by boring I mean I was busier than I am at home. She slept and I fielded people. It seems there are times when we have a steady stream. The social worker, the guy checking her port, the respiratory therapist, I could go on and on. I've stopped encouraging her, when she's awake, to greet people. Wondering if I should do the same. 

She woke up in a good mood. Ready for movement. David came and as soon as he walked in he was grated with a, "hi daddy!" I will say despite everything she has most definitely retained her sweetness. Since she was so ready to move we headed out for a walk, no wagon this time. We did our lap and since the toy room was empty we went in there for a while. As we were leaving one of her cords got stuck but she kept moving, she fell cords, came apart, I freaked out fearing the line I to her port was ripped out. I did a quick check, all looked ok except for the blood in the tube, then sent David to find a nurse. They came quickly and came to my same conclusion. I got her back to her room where the nurse flushed her port and attached new tubing. What a relief.

After resting a little while she wanted out of the room again but she was so sleepy I really didn't think she would go far. As I came closer to her she pointed at my left shoulder which is code for "carry me." I carried her down our short hall then let her walk back. 

Now the job of trying to get her to eat. David had run out and gotten us some food. When he offered her his fries she took them, then continued to munch on them. Which is huge since she was feeding herself. She also gladly took his lemonade off his hands. When her food came we had a mix of her taking bites on her own and me sneaking more in. She really didn't eat much but the fact that she's starting to feed herself is encouraging. 

Starting at around 8:30 she began announcing that it was bedtime. She handed me her glasses then pointed next to her on the bed, code "mom lay down its bed time." When I finally did she took off my glasses and pulled the rubber and out of my hair. Such a bossy one, if you ask me. It took her a while longer to go to sleep so we snuggled and talked about tomorrow. Feeling blessed by this girl.

Tomorrow is another chemo day.

Deep breaths.

***And now we're up to date! Whew! I will continue to post updates on how and what's she's doing and I have some other things I want to share as well. For me this week has been a week if questions. I'm trying to learn as much as I can. If you have questions please ask in the comments! Ask about anything. And if I don't know I will find an answer for you.***