Patrick and our family have been watched out for this week, and especially today. Patrick finished his course of antibiotics about a week and a half ago. But I just couldn’t shake the feeling that we needed to be watchful.
Last Friday, he a really bad night’s sleep. His g-tube got caught on the side of his bed. He had a horrible diaper rash again that woke him during the night. And then later, his pumps alarmed, making our day start out all too early. None of us slept well, but that morning I was especially exhausted. Thankfully, my mom offered to take him and let me have a nap.
But when I picked him up, brought him home, and got him ready for his nap, I just couldn’t shake the feeling that something was off. His belly wasn’t settled. He was a little warm. And I didn’t like the way he was stretching his legs as he fell asleep.
So, I tried to call for blood cultures, but Patrick’s GI was out of town. I texted his nurse, who urged me to call the on-call doctor. But I just couldn’t bring myself to do it. He was tired, but ok when he woke up. He had a playdate and was very happy for it, and then it was the weekend. And things seemed fine. And I talked myself out of it.
Saturday afternoon, I got a call from Patrick’s nurse. She’d just been asked if a member of the board of directors could shadow her at work that day, and she thought that our family was a good place to take him. Patrick wasn’t on her schedule, but she asked if she could come help with his dressing change.
That was enough excuse for me to decide we ought to do cultures anyway.. just for peace of mind.
So, Monday morning, I made a mad scramble to get those orders on time for his nurse to draw the sample while she was here. And everything went smoothly. He looked ok to her and made a very memorable impression on the man from the board.
And then, we went up to the hospital and visited another short gut family who was there, ate lunch, and saw Dr. Jackson who also said that Patrick looked good.
I figured it had all been in my head.
And then, this morning, as Patrick and I were out running errands, my phone rang. It was Dr. Jackson calling to say that Patrick’s blood cultures from had turned positive the day before. (And he was pretty furious that he’d only just heard about it this morning.)
The prescribed treatment for the bacteria they suspect he is growing is the same antibiotic he just finished. So, since we stopped treatment so recently, Dr. Jackson prescribed something a little different.
He suggested we just restart antibiotics and treat this infection without going into the hospital.
That made for a crazy morning. I knew it would take time for orders to get in, so since we were at the grocery store, we went shopping. (I’d promised Patrick he could push the kid sized shopping cart at this store, and had to make good on the promise.)
I got to my car and made a couple of calls to let the transplant team and insurance company know about the infection and plan for care. And then my phone started ringing. And it rang, and rang, and rang. I’d pick up one call, only to have another call on call waiting, then hang up the phone and discover another voicemail left because call waiting was busy.
It took a bunch of hurried coordination, but we got all of the plans made.
Patrick’s nurse was going to meet us at our house just after noon to draw a new set of cultures, then the pharmacy would deliver antibiotics. I’d start them then put Patrick down for a nap.
The timing was perfect, as our furnace quit working the day before, and the furnace repair man was due at noon. (Not quite past the last frost of the season yet.)
That gave just enough time to finish my errands. (With the help of my little sister, who messaged me just on time and was available to help keep Patrick distracted while I juggled shopping and phone calls.)
But the rest of the afternoon still didn’t go smoothly. As Patrick’s nurse was arriving at our house, she got a call saying both of her kids were sick, and that what they had was very contagious and she should not see patients.
So, we had to wait for another nurse to come. And then the antibiotics didn’t arrive at 2. I called and found they’d set them aside to be delivered with the TPN order that was due at 4. With a little nudging, we got them here by 3.
My amazing little sis went to work and then came back to my house, where she helped take care of that delivery while I got Patrick down for a late nap. Then, helped me mop the house. (Did I mention that our bird, Max, bit a hole in Patrick’s tubing last night. I didn’t catch it, even though Brian spotted it and pointed out hte TPN drips all over the floor… that is, I didn’t catch it till this morning when his floor and bed were soaked in TPN and his blood sugar was low. We started our day with laundry, mopping, and cleaning a mattress.)
So my sister helped me get the TPN spots mopped up and dinner made. And then, when I woke Patrick and he was feeling miserable from all the medication he’d gotten, helped him play dress ups and then conned him into resting on the beanbag chair with her.
And I just kept thinking that this day was crazy and hard and not to plan.. But it was leaps and bounds better than a hospital admission day.
We’re hoping to keep Patrick at home. We’re going back to me being sleep deprived and him being loopy from the Benadryl he’s on.
I’m sincerely hoping that they’ll find that this bacteria responds best to some other antibiotic so he won’t need the benadryl. But that is probably wishful thinking.
More than anything, I’m hoping that he keeps staying as healthy as he’s seemed and that we can still make it to the grand adventure we have planned in a week and a half.
Any way it goes, I’m feeling especially protected and watched out for today.
And now, rather than staying up all night proofreading or adding pictures to this post like I’m tempted to do, I’m headed to sleep. The AM dose of antibiotics will come early. And tomorrow is going to be one very crazy day. Staying at home means that Brian and I need to do the work of an entire hospital staff. While still keeping up with the essentials of life at home.
At least tomorrow is a school holiday.
Patrick Hoopes 