Transplant Day 94 and still here

For all that the doctors and I always try to say that we can’t rush dates because you can’t predict what Patrick’s body will do, I sometimes accidentally get myself set on a goal and then am discouraged when we don’t meet that goal.

When Brian left, Patrick was flying through recovery. We pushed them to go up on feeds quickly because his belly was handling them. He was eating well. And we said, “I know you sat that he might needs weeks to get over this because he doesn’t have an immune system. But he feels great. And he’s a miracle. And he’ll shake this quick.”

He did not shake this quick. On Friday night, Patrick’s feeds had reached 70 and he was doing great. Two more increases.. one every 8 hours, and then a day of observation and he could be discharged. They turned up the feed rate at midnight, as the clock kicked over to midnight. At 1:30 I woke up to the sound of Patrick’s tummy churning angrily. And then the diarrhea started. And two diapers later, I called the nurse and said we needed to turn the rate back down.

I was already fried on Friday. I’d planned to ask for a volunteer and go back to the house for some laundry. But Patrick fell asleep at 1:00… and he slept till 5. He’d be woken, ask me to come lie down with him again, and then he’d crash again. I’m pretty sure his prograf level had gotten low enough from being sick that the side effect of insomnia had temporarily worn off. And I didn’t have the heart to wake him. But that meant that when he woke, I had missed the chance to get help to go do laundry. Instead, I tried going and getting change and using the one washing machine I know of on hospital property, in the hotel wing called the lied. I finally got someone to break my $5 bill.. but several trips to the washing machine later, I hadn’t been able to start laundry.

That night, I’d begged Patrick’s nurse to sit with him a little extra after giving meds so I could run back to the house and get clothes. I was literally out of clean ones. And that worked…

But then, here we were… awake during the night with a tummy ache and too many diapers and my pajamas got dirty and I had to try to do laundry again.

Patrick’s belly woke him at 6:30 a.m. so I decided to embrace it. I threw on clothes and hauled my laundry back to the other building and started a load of wash. I stopped in the cafeteria because I was still two quarters short of the change I needed to dry my clothes. Then I came back, hopped in the shower. When I got out, Patrick was out of his bed telling me he needed cleaned up. Oh boy did he. So, hair uncombed and socks off, I put together a sponge bath.

When I finally got that done, I was late moving the laundry to the dryer. So I hurried back, moved laundry.. came back and finished cleaning up the room, talked with Patrick’s morning nurse. Then, I went to pick up my laundry and got back to discover that I had missed rounds.

This was kind of the last straw. I knew when I’d asked for feeds to be turned back down that I was choosing at least one more day till discharge.. But to not even discuss the problem and plans with the team because I had been struggling to take care of myself was frustrating.

I broke down in tears. I sometimes really miss the amenities of a children’s hospital designed for parents to sleep over. I also really miss having people around me that I know well enough to say something like “will you do my laundry?”

Anyway – the result was that the nurse decided to give me a break. She said to take 2 hours and do whatever. Knowing we were committed to the weekend in the hospital, I went to the craft store to get more ways for Patrick to pass the time. You know when you’re trying to plan to keep kids entertained for a road trip? Or trying to keep kids entertained when they are home sick from school? Imagine that magnified by a 2 week hospital stay… every other week.. for 3 months. Patrick has toys. But he is so stir crazy that getting him play with them is a struggle. Crafts are a better bet because they are continually new. And so I’ve built in a craft budget.

I felt better after some time to myself. I even picked up french fries and McDonalds and we had a nice lunch. That evening, a friend from church came and sat with him for one more hour, giving me a chance to go back to the house and clean up some of the messes we left behind there.

And then Saturday night, one of the nicer, bigger rooms became available and Patrick’s nurse came and asked if we wanted to move.

This has made such a huge difference! Honestly, I hadn’t realized how cramped we have felt. Not just in the hospital room… I knew we felt crowded there.. But also at the Ronald McDonald House.

I’ve been asked to describe the living accommodations there. Basically, we have a room that’s a lot like a hotel room. We have two twin beds and a double bed, some big dressers, a closet that is stacked floor to ceiling with medical supplies and luggage. We also have 6 totes along one wall filled with toys for Patrick, mommy school supplies, and other odds and ends. It is a nice room, but cramped when 3 people are in it.

The rest of the house is pretty spacious. They have a triple kitchen that we share. (Triple meaning 3 sinks, stoves, and dishwashers.) Everyone is allotted a shelf in a fridge and a small locker style cabinet to store food in. Because of Patrick’s allergies and not being able to eat food brought in by dinner groups, we actually have two. There is also a wall of bar-sized fridges to keep medical supplies in in this pantry area. The kitchen is very nice with just about any kind of appliance you can imagine, though the pans and knives and other basic supplies are pretty well used and worn out.  Especially since they all have to go through the dishwasher after very use. Not the best thing for non-stick and knives. The dining room is filled with banquet sized tables. There is a sunroom off of the dining room with a TV and smaller tables. There is a large family room and toy room downstairs, a computer room upstairs, and a smaller sitting room at one end of the hall with a table where we do Patrick’s school and church.

There is also a wing of offices for house staff. Patrick is a people person, so we have to limit time in the common areas of the house because when I turn my back, he sneaks away into the offices to play with his favorite staff members. I don’t mind him visiting, but he would spend all day there if he could. House rules say that children must be supervised by parents. They sometimes bend this rule and let him visit or help them clean while I am cooking or making his formula, but mostly he is supposed to be with me. So I spend a lot of time stopping what I’m doing and going back and finding Patrick and bringing him back.

So, strange as it sounds, this big room with two TV’s and lots of floor space and few places to wander actually feels like a nice break. Especially since the nurses and other staff are taking care of all the responsibilities that usually have to divide my attention. (Formula, cleaning up, making food.) Turning the superbowl on one TV while Curious George played on the other TV and eating snacks and doing crafts yesterday evening was really very nice.

I wish I could say we were making better ground. Saturday morning, they turned up Patrick’s feeds back to the rate that had made him sick during the night. In daytime hours, he did ok with this. He even felt well enough to each a couple of pretty decent sized meals. And his diapers all looked good. But when night came, his belly started to churn again. He laid awake with a belly ache. I got up and changed diaper after diaper. The diarrhea was back pretty full force. And I was worried that something new was brewing or that the virus had done some irreparable harm. (Hence the Facebook post asking for prayers, in case I worried any of you.)

When the doctors came for rounds, they said that they didn’t love seeing him stool so much, but that his labs were stable so we are still getting him enough hydration and nutrition so far. So, they didn’t got up that last 10 cc’s that he needs to not be on IV fluids.. but they didn’t turn things down either.

They said that this is just his weakened immune system still fighting the virus. Pay attention to this: the virus Patrick has is a common stomach flu. It lasts 24-48 hours in most people, but is contagious for up to a week after symptoms. I was sick for 36 hours. It’s been a week and a half and Patrick still has at least 2-3 more days of hospitalization ahead of him.. and that isn’t getting him back to where he was before he got sick. That is just getting him healthy enough to not need to be in the hospital.

We are extremely careful about germs in our family anyway.. but will be even more so when we get home. And yes, we will ask you to stay away if you are or have been sick. And we will ask you to wash your hands over and over again.

Anyway – this post is quite long. Long story short.. Patrick’s belly is still getting sicker at night than in the day, but he did a little better last night. Odds are good they will try to turn up his feeds one more time today. Odds are good this will make his belly sick again for another couple of days. At least. They tell me this can take transplant patients down for weeks or even months.

We are ok. Honestly, I’d prefer to be at the hospital right now instead of the Ronald McDonald House. Yes, it is exhausting to try to keep myself fed and dressed. But, it’s nice to have the help while Patrick’s belly is so unsettled. It’s kind of nice to be a little alone. And it’s Monday. Which means there will be more help here today. The ward brings food on weekends and comes and gives me breaks as they can. Nurses and volunteers and child life do their best to get me breaks, too. (If I just stop being tough and ask.) So I can just take care of Patrick and me.

Oh – one other thing… I got to see a real Nebraska snowstorm. Church was cancelled yesterday. Schools are closed today. I hear the roads are pretty slick. Curious to go compare this to what I’m used to in Utah. I’m learning things are colder and wetter here.. which usually means more ice. And their roads are so much narrower that I kind of get why things shut down for weather here.

So I’ve been pretending that we’re all snuggled into a warm cozy room for a winter day here. Put aside the reason we’re here, and it’s not too bad.

 

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