Tomorrow, we’ll have been outpatient again for a week. This time the transition has been a bit easier, though there is still PLENTY to adjust to. Especially since I’m still “packing” the wound from Patrick’s ostomy takedown. (It’s almost healed. Just not quite. And the job takes 15 minutes twice a day.)
We actually have some things on our calendar these days. Christmas break if over, so Patrick has school 3 times a week. His teacher comes Monday, Wednesday and Friday for an hour in the afternoon and they work on reading and writing and math. I am required to be there, but sometimes wish I wasn’t so I don’t slip and get in the way. However, it does give me some direction for the mommy school we do on any day without morning appointments.
Tuesdays and Thursdays will be feeding therapy days. We had our first session today and I found it was more productive than I expected. We blew fluff balls through straws to help build oral motor muscle strength. Then, I pulled out my assortment of foods and we had snack time together. Patrick was a bit shy at first, but guacamole won out. And before I knew it, he’d also experimented with soynut butter and crackers and even, at the end, took a lick of hummus. He didn’t think he’d like it, but then he ended up dipping his finger in for more and pouting when I didn’t let him.
I was actually quite relieved that Patrick ate well today. I was really quite afraid that he was getting sick or something was going wrong because I was changing diapers every 2 hour yesterday from afternoon till the middle of the night. It appears, however, that it maybe was just something he ate. Specifically, I tried some Avocado Ranch guacamole with him, which claimed to be non-dairy and vegan. But something in it didn’t sit quite right, I think.
In the end, though, no serious harm done. His labs looked ok today and his appetite was back and he essentially ate from 10 a.m. till almost 2 p.m., then also had a great dinner.
Monday and Thursday are lab draw days. This is the only day we have to get up on time. I kind of hate knowing that I let us sleep till 8 or later most days. However, Patrick’s evening care schedule keeps him up till about 9:30 most nights and since we decided that he doesn’t nap most days so he can sleep, he needs to sleep in the morning as long as he can stand.
This morning, the nurse was running late. That threw me a bit. Meds are due immediately after she leaves so that meant that I was late giving meds. It did give me a chance to get Patrick’s bed stripped down and laundry started. (I thought we’d be past that post-transplant, but he gets so much fluid at night that even 3 diapers isn’t enough to keep the bed dry. If he were potty trained, he’d never sleep.)
But I think that even with the shift in routine today, I got everything done that needed doing.
Thursdays are clinic days. The doctors on call rotate through clinic and so how clinic goes kind of varies by doctor. Today’s doctor was Dr. Vargas. He tends to be the conservative one on the team. So the plan this week is to stay the course. Increase Patrick’s feeds slightly so that he can have 2 more hours off of feeds each day and then increase them again in a few more days and he’ll be down to just 18 hours a day of tube feeding.
If Patrick hadn’t had a crazy upset belly scare last night, I might have been frustrated by a slow and steady approach, but right now with him simultaneously trying to learn to eat, this really does seem like the right plan. The good news is that everything, and I mean absolutely everything, else has stayed stable. That puts us closer to the criteria that will get us home. He needs to not need constant monitoring to keep his medication and diet steady and it’s really good news to prove that he could have an upset belly and not need to make big adjustments.
It was a beautiful day today. Well above freezing during the day. We barely even needed our coats. So after clinic, we went to the park to let Patrick play on the playground for a bit. There was still snow on the ground, though, and Patrick’s wet feet were slippery. He slipped and skinned his knee and needed a bandaid. And honestly, that made me happy. A normal childhood injury from doing a normal childhood thing.
It did, however, cut short Patrick’s play time. After that, he was done today. So, we ran to the store to pick up some things to take to dinner. (We were invited to eat with a friend from church).
I meant to let Patrick come back and take a short rest, but a 5 year old girl moved into the house this week and she and Patrick have become fast friends. She was in the kitchen, so they needed to play together. And that was fine. We were a little hurried getting set up for bedtime.. but nothing to really make us late.
Dinner was fun. They have 2 little kids just under Patrick’s age and they enjoy playing together. Even if Patrick was a bit loopy from being tired. (He has asked for naps 3 days in a row now that I didn’t have time for.) They missionaries were also there, which was an especial treat. Patrick loves the missionaries. I do, too. The spirit that is there when they teach, and they always bring a spiritual message when they come for dinner.
Amazingly, Patrick went to sleep fairly quickly. And I’ll be honest, I’m fighting to keep my eyes open. But I also think that Thursdays probably need to come with blog entries because those are the days we hear one more week of care plans from the clinic.
I’m looking forward to a Friday, though. We only have school tomorrow. And cleaning up the house so daddy can come back again. (And then we’ll see how the routine holds up.)
Patrick Hoopes 