Day 279

All things considered, it was a pretty quiet day up here on the seventh floor. This is good, because we got very little sleep last night. Benji’s blood pressure has been high since we were admitted, but it spiked beyond Dr. Oshrine’s parameters last night, so he was given an additional medicine to take on top of his new hypertension pill. He woke up often, complaining of belly pain and begging for drinks, the colder the better. Ever the culinary creator, he mixed various brands of bottled water and Gatorade and tea and ice into different containers until he was satisfied, then he would rest–and start all over again.

Benji’s chest was also feeling very uncomfortable. The area surrounding his port, where last week’s Aquagard allergy attracted such an angry response, is behaving much like a second degree burn. So are some of the most severely affected areas on his back. He wanted cold things on his skin too. As I watch this burning, molting process on the outside I can only imagine how he feels on the inside. No wonder he wants things icy cold.

Despite a relatively sleepless night, our morning was extremely positive. Benji’s 6am labs came back with steadily declining Methotrexate and creatinine numbers. He still isn’t producing neutrophils, but his white blood cell count was way up. The Neupogen Dr. Oshrine prescribed is working quickly, and precious neutrophils should follow soon.

I was most encouraged by two things this morning: Benji turned on the television himself, and he asked for a smoothie. He hasn’t been interested in TV, or in any activity, for more than a few minutes at a time since we’ve been here. His desire to find an episode of Spongebob was a big deal to me. While he watched his show, I called the smoothie place right down the street. We have a sweet friend who lives very close to All Children’s that has always insisted we ask her to bring us things we need. I ordered five different smoothies and paid for them by phone. Within ten minutes, my friend was at the door. Benji drank two sips of each smoothie. It doesn’t sound like a lot, but in total I think that’s the most he’s digested at once in two weeks.

We had our morning visits from Nephrology and Infectious Disease, both with no real changes to report. The Nephrologist was happy to see Benji’s creatinine down to 1.59. This is exactly the level it reached last Wednesday, before it started to creep up again. A lower number tomorrow would make me very happy.

Benji took a nap after his busy morning, and I spent some time knitting and catching up with my mom by phone. After Benji woke up, Dr. Grana came in. I was genuinely happy to see her. It was clear that she and Dr. Oshrine had communicated closely about Benji’s care, as he will be away for a few days. Her compassion and attention were most welcome, and she looked so happy to see Benji making positive steps.

Benji was sleepy for a good part of the day. I reminded myself that even though we are making progress, this will take lot of time. Benji’s body is so tired. He is working hard to heal. He is also taking a new medicine that stimulates the bone marrow and can make his bones ache. Naps are good.

I rolled out the yoga mat and got in almost an hour of practice before Michael arrived. He insisted I take a nap, which I did, and it felt so good. After I woke up, it was time for weekly bingo on the All Children’s TV network. Benji is a two time champion. Michael and I got six bingo cards to try and go for a third title for him, but none of them were winners. Still, I think Benji enjoyed watching us play.

Kathy and Gana brought a nice Greek dinner for us tonight, and Banyan along with it. I was so happy to see my boy. I loved having him here. He showed Benji silly videos, procrastinated when it was time to do homework, and infused the room with his sweetness and normalcy. Benji tried a couple of bites of food, but his burning mouth betrayed him. Still, the effort is there, and that’s huge.

Benji’s eyes have started to water and form crust in the corners. The ophthalmologist didn’t visit today, despite Dr. Oshrine’s request; the order needed to be rewritten to reflect the physician on call, so we are told Benji will be seen tomorrow.

Benji’s itchy eyes tempt my anger, but I choose to keep my focus on what needs to happen now for him to heal. I will tend to his burning skin, mouth and belly. I will help him move and help him rest. I will try and help him find the right things to feed his body and his spirit. Right now, we’re watching playoff baseball. That’s a start. I told his coach today he’d be back on the field soon; I don’t know if it’ll be October, November, or spring. But if I close my eyes I can see him swinging hard, and remembering to run through the bag at first.

9 thoughts on “Day 279

  1. Benjamin is the bravest little boy I know. Praying thing will continue in the right direction.
    Love, Prayers & Hugs being sent.

  2. Baby steps in the right direction. Bless you all. Keep healing Benji. Stay strong! Stay brave! Love you so very much!

  3. You are doing such a great job taking care of your son and documenting his journey! Good work, Mama! I’m glad to read that things are going in the right direction. Little boys are resilient and strong. I’m wishing the best for your family from Austin, TX!

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