Saturday, July 10, 2010

Not Home Yet

I didn't blog last night because yesterday was boring, I was tired, and on the verge of grumpy. I have my days when the hospital feels a teeny, tiny bit like an escape because I can't worry about anything else in my life. No laundry, no errands, no cooking, no home improvement projects, no cleaning, nothing. I just focus on the needs of my son. But most days I just want to be at home with some sense of normalcy.

William is a happy, peaceful child by nature, but even good kids sometimes get unpleasant. So do good parents! And although William's immediate needs are fairly simple, everything takes a long time. To quote one of his best friends, James, "At the speed of William." William does not take after my speed or impulsiveness. He is very methodical, calculating, and thoughtful---more like his dad. Great qualities! He likes routine and is particular about certain processes. I cringed this past year when he begged for shoes with laces and I realized I had to give in to my 2nd grader who eventually needed to learn how to tie shoes. It just takes so long when I'm trying to pile 5 little barefoot boys in the car to go anywhere. Yes, they are usually barefoot and I toss the shoes in after them. It's called multi-tasking. I drive and they slip on their shoes. But William likes his shoes tied just so and he is rarely ready by our destination.

Back to how this relates in the hospital. William has very painful mouth and throat sores. A very common side effect to his chemo. They show up a few days after chemo ends and last about a week and are usually just finished healing when the next cycle of chemo begins. This creates a problem with eating. The one thing I focus on controlling! It is very painful and he cries and struggles to get anything down. He actually needs morphine to eat. However, morphine makes him nauseated when taken on an empty stomach. So here's our process for eating:
-40 minutes before eating he swishes with a solution of Maalox, Benadryl, and Xylocaine. This coats and numbs and lasts for about 30-45 minutes.
-10 minutes later, after it starts to take affect, I try get him to eat something small. This usually is more forced than voluntary and includes wincing and whining. (me and William)
-10 minutes later, I give him morphine which tastes bad so I have to have a drink immediately ready.
-20 minutes later, the morphine sets in and he is able to eat, but some pain remains and I must sit and coax each bite or sip.
2 out of his 3 meals are protein shakes right now. And each 10 oz. shake usually takes him over an hour to consume. I don't try to push him too hard, but we have to get it down before the meds wear off.

So for all you mathematicians out there, you've probably already done the math to figure out that each meal takes nearly 2 1/2 hours start to finish. Perhaps he takes after the Frenchy in me! hah!

William said to me yesterday: "It's weird, I always feel so sick at the hospital, but when I'm home I feel so good. "
Me: "Yeah, me too! The getaway car is ready. Let's break outta here!"
He smiled.

He had a blood draw this morning. (I managed to sleep through it. Awesome! I'm getting this hospital sleeping thing down.) I haven't received my copy of the labs yet so I can chart the trends with the last cycle. It's pathetic and diligent all wrapped up with a neat little bow! But the nurse did mention that his platelets were low and he would probably need a platelet transfusion. That's exciting! He hasn't had one of those yet. Now I need to look back at his platelet trends.

It's 9:30 AM now. William is still sound asleep. I'm starving, but trying not to dive into his breakfast that's been sitting on the counter for over an hour. It's the only meal that is almost 100% edible. He never eats it, but I feel guilty eating it without his rejection first. He needs his sleep, but right now we're looking at finishing our breakfast song and dance at noon if he sleeps much longer! And morphine needs a few hours between doses. But I'll let him sleep because I love him.


  1. Keep hanging on Julie! Lots of love from our family. <3

  2. Oh Julie, I feel for you and for William. I got the mouth sores with my chemo too and they are SO painful. Forget the hair falling out, nausea and fatigue...I thought those mouth sores were the worst part! You are doing such a good job of being supportive and patient. We are praying for you.

  3. i love you. i think Heavenly Father gave you william beacause He knew that you would be the best mom there possibly was for this trial he'd endure. you are a super star. i am so proud of you, so proud to be your cousin. and know that while you're sitting with him in the hospital, we are thinking about you and him and PRAYING for you all non-stop. thank you for the blog. you are such a blessing to all who read it.
    love you tons