Thursday, January 19, 2012

Day +22

You know that kissable soft skin that babies have? Once they get to be about two or so they get tougher and rougher and the soft little skin is harder to find and kiss thing that leukemia has given me is a perpetually smooth two year old. And not just the great chubby arms or the rolls on her bum but her sweet little head. Perhaps other two year olds also have this soft and smooth dome flesh but you don't get to know since your kid has hair...I do get to know and I love this sweet bald, soft and kissable head.

Ask any cancerfied parent and they will tell you that the lack of hair on their child's head is terrifying. There's no lying to yourself when your child hasn't a hair on their body. But it is a strong terrified because you know that having no hair means there is a hopeful chance of having no it's worth it. And you get used to it...and you forget about it until someone tells you how their own one year old also was a late hair bloomer. If its a good day you chuckle and mentally trip her but if it's a bad day you trip her and mentally chuckle. Kidding.

No really, I AM kidding.

And I really do love Pipers bald head. When I first walked down the hall after she relapsed and had her head shaved, I won't lie. I broke down. Too much of her little life has been bald and fighting. I'm tired of it. But to tonight when I was cuddled up to her and her head was right under my chin and right in reach of my lips...I kissed it and told her I loved her and prayed silently that this was the last season of baldness in her life. And even so, when I see her bald head now I am reminded of being in the midst of winning the battle which really is much better than being at the end of fighting a losing battle so fight on, sweet Piper.

As it is, she is 22 days post transplant. Things are looking up. Things have been hard and scary but Piper has been blessed so far and that is all I have room in my mental capacity to think/worry/ dwell on....other options remain options unless I am forced to deal with them. Denial is my most favorite coping mechanism and it has suited me well the last month or two years or so.

Piper continues to grow stronger. After a few rough days of steroids she is back to her sweet, silly and even sleepy self. Thankfully the lowering dose of fentanyl is going without problems and we are not only seeing her sleep better at night but she is napping well during the day. Piper has begun eating small bits here and there and even went so far ad to eat about 10 bites of pizza and a few nibbles of ice cream for dinner tonight...on top of a few chips and a few sips of my smoothie throughout the day. They plan to slow her TPN down beginning next week so here's hoping she will continue this trend of slowly increasing appetite. She is still having a few low grade fevers but is fighting them off on her own without Tylenol and her rash is all but gone. Because of the daily dose of Neupogen, she has a white cell count of 1.8 today and her little face is beginning to heal up and look less like she was in a bar fight. The rise in white cells so quickly can cause joint pain so we are watching for that. They have changed her cyclosporine medication to run for two hours every twelve hours instead of continually and this is the first step towards weaning her from IV medications to oral medications which are necessary to be discharged.

The only blimp on this normal radar happened last night. Pipers CVL was constantly being occluded (kinked and slowed) and the nurses were having a hard time getting it to flush sometimes. No big deal, that happens...but the nurse pushed one time and she was able to flush and we all smiled and I went to the room with Piper where we curled up and she played on the iPad while curled up against me and I read a few chapters in my book. All was quiet and then I reached over her head to put my arm across her chest and pull her closer and she was covered in blood. On her nightgown. On the iPad. On her blanket...everywhere. I immediately pinched her line and called the nurse and we discovered it has "popped" or torn and was leaking big time. Now, when Piper had a CVL at her diagnosis it tore on two different occasions and both times were in the middle of the night and both times it was treated very seriously and quickly. Not so much here. Apparently this hospital doesn't have a repair team and there wasn't one available to fix it at 11:00 at the nurse put a sterile bandage over it and kept it hemostat clamped all night. To say I was unhappy with this was a gross understatement. I was livid...Piper cannot leave her room without a mask, she is only allowed to eat certain foods and she can only have guest with impeccable immune systems and yet somehow,someone was okay with her line being semi exposed for twelve entire hours.

When the guy from surgery came at 11:30 this morning, he repaired it at her bedside with no problems. Well, Piper hated it and had to be given Versed to calm down but the repair went smoothly and will be available to be used after twenty-four hours. I did file a complaint, not in a huffy fashion ( believe it or not, friends) but calmly and emphatically. I am still concerned that the line was contaminated and there is no way to find out without her developing problems. Moreover I am concerned that the hospital has no policy for CVL tears or breaks at all times, risking children who are already in sterile environments and needing this to be available at all times. Hopefully I was heard and hopefully this will be remedied in the near future...for other kiddos.

I think that's all. Piper and I both are getting a little stir crazy. Two year olds are not designed for small rooms and face masks and we eagerly look forward to discharging and having more freedom and to begin dreaming of a future that involves playgrounds and preschools and all the lovely germs that Pipers new immune system can valiantly fight off.

So let's go Piper....keep fighting the good fight.


  1. And i pray mommy also is given the strength to keep up the good work!
    I love you sweet Susanna. Have I told you lately? Well i do.