winter – Patrick Hoopes

Transplant Day 102 and Snow boots

I was almost going to put off writing one more day. Then I thought, “Well maybe I’ll send a short update out just so people know we are ok.” Then I pulled up the blog and realized I haven’t written in almost a week. So I’m going to try my best to post a quick blog. I am very VERY sleepy so this may not be my best.

Things are good here. Patrick’s belly finally has been seeming settled. On Sunday I turned up Patrick’s feed rate without it making him sick overnight.. a first since he got sick and a sign that he might finally have beaten the virus. However, the diaper I changed just as I put Patrick back to bed has me questioning my confidence in that notion and we’ll see what the night brings.

We’ve been working on finding our rhythm again this week. I mixed up the routine a bit this discharge. I realized that it wasn’t worth the struggle of trying to do so many things outside of the room. It just means more exposure for Patrick. And more time spent tracking him down when he wanders or telling him to stay out of things and more bad feelings between us.

He was so happy to be back at the Ronald McDonald House. So happy to be able to play without rules with his choice of toys. The first couple of days he didn’t want to leave the room. So I started making formula here in the room instead of in the kitchen. And I started drawing up his morning meds at night and putting them in the cooler I keep in the room so I don’t have to go get them in the morning. And we don’t go out as much. And we are both cool with that.

But we have had some fun, regardless. Friday, Child Life at the hospital arranged for a mini carnival and haircuts to be held at the same time. So we went over and got Patrick and myself much needed haircuts. And while it was my turn, Patrick got to go into the room next door and play. Then, he got to pick carnival prizes. Only he didn’t just pick for himself. He got gifts for Brian and me, too. He picked me out a bottle of lotion which, really, is the first time I think I’ve ever had him pick a gift for me and struck me as very thoughtful. He picked hoop earrings for Brian, but then noticed a Rubix cube and changed his mind. For himself, a book light that we use every night to read his picture scripture stories.

Saturday, we got together with a friend that Patrick made here at the hospital. They are staying in the Leid, a hotel attached to the hospital. His grandma and I have been watching for a chance to get them together. So on Saturday, I invited them to come play in the snow. We had a foot of snow, but it was 45 degrees and starting to melt.

So, in the morning, Patrick and I ran out to Shopko and bought some snowboots and waterproof gloves on clearance. We also picked up some snow dye bottles. And then we had a McDonalds happy meal together. (The little boy is here doing the intensive feeding therapy program so we thought that eating together might be good peer support for both boys.) Then we went out and played in the snow for several hours. We built a snowman. Patrick’s friend then said we needed a snow elephant, so we built that, too. I dug a box out of the recycling bin and we helped the boys sled on a little hill and they laughed and laughed. We made snow angels. We threw snow at each other, but not snowballs because our perfect packing snow made killer snowballs. A family in the house from Tennessee kind of timidly came out to play, too. I think the moms had as much fun as the kids.

Sledding in a box works when both the hill and the kids are small. We wore out the bottom of the box, though

Patrick putting some extra color on our snowman. When we started, he just had a red hat. But he was already melting as we worked

When we started, the snow in this yard was pristine. I finally realized most of our housemates are from the south so even if they weren’t at the hospital, they didn’t usually play in snow. This just felt better.

And then, by the end of the day the color had all run off our snowman because of the heat and by the end of the next day, he was just a little pile of snow.

Another treat is that Patrick can take baths again. Since transplant, baths have been very limited and often forbidden. With an ostomy, they were possible but had to be short. After takedown, he had an open incision for almost a month. In the hospital, I only do sponge baths. So to be able to put him in the tub and let him play is a treat for both of us. He’s had a few 1 hour baths. One morning, I just put all the towels in the room on the floor to catch the spills and splashed and let him go.

So much has changed for Patrick. It will be a lot to get used to when he comes back. He is eating like crazy these days. I’ve started to let him have snacks to just graze on. I put the in the disposable coffee cups that the house provides. So he munches on cheerios while we drive. I have cheerios in my seats. Who knew I’d be happy for that little milestone one day?

On Sunday evening, I packed him a cup of veggie straws and we went for a drive. He finished his cup after 10 minutes and asked to go back home for more. I didn’t oblige. Instead, we went to drive across the “Mormon Bridge” just cuz we’d heard about it. Then, as I was driving back, I noticed signs for the “Lewis and Clark Monument” outside of Council Bluffs, Iowa. So, we went over there. Arrived just as the sun was setting, reflecting in the Missouri River. Being in a state park, on a hill overlooking the city.. felt a bit like home. Patrick was just happy to wear his snowboots and stomp in snow and mud.

Patrick said “take my picture by this wall”. So I did.

Patrick also snacked on Cheerios all through our Primary lesson this week. We were looking for a room to do this in and found the Sunday house staff member resting on the couch in the room we usually use because her back was out. Patrick just snuggled up next to her and watched her show and ate Cheerios. Then, when her show ended, I told him it was time to do his lesson. So he asked her to join us. She obliged and it was very sweet, and kind of nice to get to have someone else listening as we talked about Jesus and his resurrection and atonement. She even sang along with us. Patrick tried to make her say the prayer, but I persuaded him to teach her about how we pray and let her listen just this one time.

Anyway – I was saying… so much has changed for Patrick. He is growing up in so many ways.

He eats. Kind of all the time. It’s still new and most of what he eats is like what you’d feed a toddler still learning to eat. But he has discovered a love for ham and cheese sandwiches. He chews up and swallows the bread and cheese, but spits out the ham. The first time he did this, I was stunned. When a few days later I offered another sandwich, he said “Mmm. Yum!!” I think he just needs time to go through the developmental stages of eating. I haven’t taken him back to feeding therapy yet because I wanted to give him a week to get better and see what the doctors said in clinic this week. But we are moving the right direction.

He has realized that dirty diapers don’t feel good. Now, he knew this before, but his stool was very different before. It was all liquid and either had to be changed right away or absorbed completely into the diaper. This is different. So we get up and change him during the night if he goes. And he’s learned to go back to sleep after. (A HUGE step for him.) And when we someday can keep a routine long enough, I think we’ll be ready to start exploring potty training again because I think he finally has some control over that.

Meanwhile, this means I am very sleepy. It’s kind of like I have a newborn again. Formula has to be refilled every 4 hours because Patrick’s bags only hold that much. A bigger bag could be put on ice and not need this attention, but then Patrick would have to wear a bigger backpack. He has one, but he prefers the little backpack that doesn’t get in his way when he sits down. Between changing diapers and refilling formula, I am up every 3-4 hours during the night. This is why I don’t blog. I am so sleepy I crash when Patrick crashes. And since naps can mean insomnia, we don’t always make that up during the day.

Taking the snowy way because he has snow boots

He still chews on everything, but he’s given up paci’s. Ok, I’ll be honest. He tried to cave on that today. He found his pacifiers and asked for them back today. But I reminded him he had chosen to be a big boy and didn’t need them anymore. Then I grabbed the sewing kit and cut the paci’s out of his wubbanubs and sewed their mouths back closed. He was sad. He said he wasn’t a big boy. He was a girl. So he could have paci’s. So I grabbed a chewy tube and sewed it onto the hand of his monkey and told him that he was a big boy and his monkey could help him have chewies instead. This kind of worked and he is happily sleeping with his friends again tonight.

Patrick has also made tremendous leaps in language. His first/second person confusion is pretty well gone. And he talking more and about more grown up things. The other day, we had a really off day. We tried to nap and it failed and Patrick had a chip on his shoulder all day, and after fighting about nap, I did, too. Nothing clicked. He kept pushing boundaries. I kept falling for it and snapping at him. Finally, we got to the room in the evening and I sat down and just cried and told him I didn’t like fighting with him anymore. He gave me a big hug. He told me, “I’m a tech.” This is the title of the medical assistants who check vitals at the hospital. I don’t know why this exemplified the most compassionate person he could be at that moment, but I understood that was exactly what he was offering. Then, he got up and got my Kindle and brought it to me and said. “Mom. Look at your Kindle. It calm you.” And you know what, he was right? We sat on the bed and I read my kindle and he played with his tablet and we were calm.

He is still in love with reading. I wish we were making faster gains. It’s really hard when school is only 1 hour a day, 3 days a week and we rarely make it a week without missing at least one day. But I’m trying. On Monday, I pulled out Patrick’s stack of sight word readers and my laptop and I told him that for every book he’d read to me, I’d let him play one game on SesameStreet.org. This strategy actually worked really well. Not only did we practice reading, but we played some educational games. Then, when he wanted more mommy school, I pulled out a little game we have with letters on dice and we built words to and then changed their first letters to find rhyming words. It was one of my better mommy school sessions.

Patrick often pulls out this bike and rides while I do the laundry

And today, we just stayed in the room and cleaned out Patrick’s toys. It helped him remember what he had here so he wanted to play here more. It helped me organize some of what was overflowing. And it gave us a step in the right direction for daddy to come back tomorrow.

Brian has had a doozy of a trip home. He had meetings with a group from out of town last week and a couple of days in, one of them came down with a cold. Well, Brian caught it. And it took him down. He had to take a couple of sick days. When he was still running fevers after a few days, he actually ended up at the doctor where he was diagnosed with bronchitis and given antibiotics and a cough suppressant. But that didn’t mean rest for him. We decided that a last step to really cleaning up the house was replacing the carpet in our bedroom. So, still sick, he moved all of the furniture out of our room so that could be done Monday morning. Then, also Monday morning, discovered that he had a nail in his tire. Had to put on a tire and take it to be repaired.

He is a lot better, but his cough is still lingering so I get to try to reach Patrick’s team tomorrow to figure out if that means that Daddy shouldn’t be around. And then we have to figure out if that means postponing his trip or finding him somewhere else to sleep or wearing a mask all the time or what. This is another new thing for us. Navigating a contagious world with an immune suppressed family member.

It has led me to research into contagious period for certain illnesses. Someday, I’ll summarize that into a handy guide of “how long to stay away if you have been or might be getting sick.” For tonight, this was a handy little document. http://www.bccdc.ca/NR/rdonlyres/8061A728-C969-4F38-9082-B0296EF2A128/0/Epid_GF_childhood_quickguide_may_09.pdf Especially given that Utah is experiencing outbreaks of a few vaccine preventable diseases right now. I’m biting my tongue and trying not to blog about how scared I am coming back to this absolutely ridiculous problem. It’ll probably come out one of these days when I have time, though.

Anyway – I think I’m about out of stories worth telling. Well, maybe just one more. First of all, we survived a very long weekend of no dinner groups at the Ronald McDonald House. I miss the friendly group of families that was here over Christmas. The current group has a more every-family-for-himself attitude that I think has grown out of the panic of cold and flu season. Regardless, knowing that norovirus can be spread in food, I decided we’d better just cook for ourselves. I started to brainstorm dinner with Patrick the other night and he said, “I have a great idea! Let’s have chicken! Like at the hospital.” Well, I’d had KFC one night and apparently he liked it. But KFC was out of chicken and literally locked their doors that night. Odd. So we ended up getting a rotisserie chicken instead and I think we did pretty darn well with instant mashed potatoes and gravy made out of Patrick’s chicken broth. Patrick ate a ton and we were both happy.

Patrick and the Omaha Lancers Hockey Team

But tonight, dinner groups are back. And we started out with a great one. The Omaha Lancers, a junior league hockey team. Not knowing they were coming, Patrick decided to wear his Avs (hockey) sweater today. So he gave us away early as hockey fans. And I’m sure he made and impression and won them over. He traced the player numbers on every team member’s jersey.. then spelled out the letters of their names. They made him pancakes and ham and toast, all current favorites, which of course won him over, too.

Ok. I am out of stories and really should get some sleep.

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.