Tag Archives: snow

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.

Patrick trying on my new hat and scarf.

Patrick trying on my new hat and scarf.

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.

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.

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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?

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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 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

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

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

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 96 and snow days

A shot of the snow Monday morning after it snowed all day Sunday. Before this, there wasn't any snow on the ground.

A shot of the snow Monday morning after it snowed all day Sunday. Before this, there wasn’t any snow on the ground.

My phone rang at 5:30 this morning. It was a recording from Omaha Public Schools announcing a snow day. This is the second snow day of the week. Church was also cancelled Sunday. It is snowing. A little over a foot has fallen.

I am trying to decide if this is premature. The parking lot of the Ronald McDonald House has snowbanks 10 feet high where the plows piled snow. And on Monday, I barely got my little two-wheel-drive car to go up the hill on a road with minimal plowing. I’m not sure that this is more or worse snow than we get in Utah. But the roads are less safe for it. They are narrow. VERY narrow. With no shoulders or turn lanes and cars parked down both sides. Also, everything is very hilly. So, while I grew up on the edge of a valley and our hills might trap us at home while the rest of the valley could manage to get around. Here, you might encounter 3 very steep streets within a few blocks of each other.

I don’t blame them for keeping the school buses home.

It didn’t affect us much with Patrick inpatient. We just watched the snow out the window. Snow days have fewer volunteers and more staff that got stuck trying to come in and fewer child life activities. But we are cozy and warm and protected from the weather. We have lots of toys and TV and crafts and books.

The less snowy days have provided ample help. We had 3 volunteers come by yesterday, giving me hours to get away and grocery shop and clean and rest. The day before, child life and music therapy and physical therapy filled in because there weren’t volunteers and I got to go back to the house and do laundry and pack clothes for a few more days. With nurses taking care of the medications and diapers and formula if I happened to sleep through those needs at night, I’ve actually had a chance to mostly catch up on my sleep in the past 2 weeks.

And that’s very good news. Because this morning, Patrick’s nurse practitioner came in and said that adding extra fluid to Patrick’s feeds had caught up his hydration and she was going to recommend discharge. It took a bit longer for rounds to come around, and I still wasn’t getting my hopes up too much. The added volume that giving more fluids required had made Patrick’s belly gurgle and dump during the night again and I had just changed 3 diapers back to back so I was pretty sure they weren’t going to let us go.

They came around for rounds and asked about Patrick’s prograf levels and they were borderline high and I was almost entirely positive, especially since it was a snow day, that they’d want to keep him one more day.

But, they said that since Thursday mornings are lab days, that homecare could provide the same care they were providing and so we could go. I settled in for a long wait, as discharge has taken till dinner the last few times. But an hour later, Patrick’s nurse arrived with some patient belongings bags and a cart for me to pack up our things and by 1:00, I was signing discharge papers.

Moving us back in always takes work. For some reason, discharge and the monthly diaper delivery always come together and that takes a good hour to make room for in this tiny room as I clean out and haul out old boxes.

But, we got everything settled in. We found time to work on a valentine’s craft, even. Patrick was obviously exhausted and overstimulated and couldn’t focus on much of anything.. but we made it through the evening ok. The dinner group let him start eating early when they saw us come down for a snack. Patrick was tired enough that he preferred playing in the room today. And so things are unpacked and put away and the formula is mixed up and medications reconstituted and line cared for and teeth brushed and pajamas on and by 9:30 tonight, Patrick was snoring in his bed.

I really should get to sleep. I know I’ll need to change at least two diapers and Patrick’s formula bag still needs refilled every 5 hours or so.

It is good to be out. And as discouraging as this hospital stay was, it seems we actually made some ground. We found the cause for the random bleeding I sometimes saw and treated the ulcers. And we found that Patrick can eat enough food to have reduced his overall tube feed rate by 10%. That isn’t much, but eating 10% of his calories is a big deal considering how little he ate before and how few foods he is used to eating.

The doctors have assured me over and over again that he shouldn’t still be contagious. They even went so far as to clear him to attend child life activities at the hospital, which is definitely a statement that they don’t see him as a risk. His gut, however, still isn’t back to where it was before the virus. That is going to take time and patience and lots and lots of diapering supplies.

My little photographer

This weekend, we took a short family getaway. My smart husband saw a deal on a cabin in the woods right as he went to leave for the Ukraine a couple of months ago. (You know, before everything hit the fan) and tasked me to pick a weekend.

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Little did I know when I booked that the Uinta Mountains would be hit with an unseasonably early snowfall. Still, we trusted in the warm cabin, and packed and went.

Getting there was a bit crazy, as we squeezed in an eye exam and speech therapy before we left town. But the trip up was peaceful, despite falling snow. We met one of our favorite Short Gut families for dinner on our way through Evanston, Wyoming and then arrived and settled into our cabin just on time for bedtime.

It was so peaceful to sit by the fire, snuggled by my husband, watching the snow fall and the end of a football game. And then, well, the rest of the night wasn’t as peaceful. Patrick didn’t sleep well and was up early, early in the morning.

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The snow meant we had to cancel our plans to explore the mountains by ATV and we had to settle for a drive in the car instead. Still, despite the rough start to the day, we had a really nice day out. The mix of autumn leaves and nearly a foot of snow made for stunning scenery. The free range cows preferring to move along roads to avoid snow broke up the drive. And we enjoyed some yummy pizza for lunch before heading back to the cabin. (They even made Patrick a crust-only pizza that, once convinced to try it, Patrick sat and ate for half an hour.)

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But for me, one of the highlights of the trip was Patrick discovering my camera. Brian loves photography and with the amazing fall/winter scene, we stopped to take pictures along the way. To keep Patrick entertained in the car, I offered him my camera when we stopped. Before long, I was following along behind him as he sought out the perfect picture. (Just like his Daddy.) It made his day and I find it quite entertaining to see the world from his point of view.

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I hope you enjoy his work, too. (The rest of the pictures in this post were taken by Patrick).

Looking out the car window

Looking out the car window

There is a whole series of pictures of Patrick's feet when he didn't realize the camera was turned around

There is a whole series of pictures of Patrick’s feet when he didn’t realize the camera was turned around

Provo River Falls

Provo River Falls

 

Mommy

Mommy

Looking up at the trees

Looking up at the trees

Daddy taking pictures at Provo River Falls

Daddy taking pictures at Provo River Falls

"Green"

“Green”

Mommy (with some help from daddy to get Mommy in the frame)

Mommy (with some help from daddy to get Mommy in the frame)

View from our cabin window

View from our cabin window

A selfie

A selfie

The time out chair

The time out chair

Trees behind our cabin

Trees behind our cabin

The never list

Some people keep a bucket list of things they want to do. I have the opposite.. A never list. Things I hope never to experience.

Monday following Thanksgiving, we woke up to Patrick making the weirdest whining noise. Brian got up to check and at first couldn’t find anything wrong. But Patrick just kept whining, so Brian got a flashlight and went hunting. Then he spotted the problem – blood! Patrick had picked off his central line dressing at some point during the night and at one point or another had snagged the line and broken it. He was soaked in TPN from the side that was running and bleeding from the broken line on the other side.

I’d prefer never to have my son break a line at 2:30 a.m. I hate to imagine what would have happened had he slept through it!

At least, though, I’d just been in his room 15 minutes before and knew the line had been ok then.

It broke at a previous repair and both lumens were damaged, so we knew we needed to get the line repaired ASAP to avoid infection, hypoglycemia, or other problems.

I clamped off and cleaned the end of the line and covered it with a sterile dressing. Then, we got dressed, packed, and loaded into the car.

Brian drove because it was snowing.. actually, by that point it had been snowing for almost 24 hours without stopping. The roads were ice and snow.. the worst driving day of the year so far. The plows couldn’t stay ahead of it. And we were headed up to the hospital on the hill. I often wonder who had the brilliant idea to put two of the region’s premier hospitals up in the foothills of the Rockies.

I have dreaded the idea of having to get to the hospital in an emergency in the snow. Never would have been enough on that one, too.

But, taking surface streets in our 4 wheel drive jeep, we made it there and in plenty of time.

We’d called ahead, so they had a room waiting for us… but as it was a the middle of the night on a holiday weekend… we knew that things could still be slow.

We just didn’t know how much that would affect us.

They’d called ahead for a repair kit for Patrick’s line when we called to say we were on our way. However, lines don’t usually break in the middle of the night when children are supposed to be still and sleeping. So the night staff wasn’t sure where to look. They just knew they couldn’t find one in the usual place.

They said wait for materials to get in at 6 a.m. So we waited. Patrick’s blood sugar was holding OK and we were sleepy so we put on some Elmo and went to sleep.

At 6, they still couldn’t find anything. The computers said there were 4 in stock. But they couldn’t find them. They said, “We’ll keep looking.”

By 9, materials confirmed that they didn’t have a repair kit in stock. This is definitely a scenario I NEVER wanted to encounter! If a line isn’t repaired immediately a lot of things can go wrong. Blood can clot in the remaining portion of the line. Bacteria can get in through the exposed open end. Basically, we could lose the line if we waited to long.

And that’s not considering the effects for Patrick of going without TPN. The best case scenario would require staying in the hospital with maintenance fluid running through a peripheral IV.

This is when I started getting creative. Remember last summer when Patrick broke his line 3 times in 3 days? And I had to repair the line in the middle of Idaho? Well, I didn’t want to go all the way to Yellowstone without the means to repair the line if it broke again. So I started saving the unused pieces of repair kits. Every kit has 3 different repair tubes for different types of breaks, so I kept all the unused pieces still in their sterile packaging.

And, wanting to be prepared for emergencies, I never threw them away.

So, since the hospital didn’t have anything to fix the line with, we sent poor Brian back out in the storm to get my makeshift repair kit.

Finally, around 10:30 a.m., he returned with the necessary supplies and IV team came and did the repair. By then, Patrick had been without TPN long enough that he was thirsty and tired and his blood sugar was starting to fall. So, we asked for a peripheral IV to be placed so they could give him some fluids and sugars while we waited for the glue to dry.
We watched some more Elmo, played with blocks and cars, and slept as much as we could. Patrick was tired enough that he agreed to cuddle up and sleep next to me in a big bed.. which I was grateful for, as I was exhausted, too.

At 2:45 p.m., the glue was finally dry enough to restart the TPN and we were discharged 12 hours after the adventure started.

Amazingly, the line worked and he so far is infection free. This is even more amazing, since 2 days later his tubing came unscrewed and I woke yet again to find him sleeping in a puddle of blood. Brian was away on business that day… (Another time never would have been enough. It took 96 oz. of hydrogen peroxide to get the stains out of his clothes and sheets. And yet, his blood count that evening was completely normal.)

The only thing wrong really since our adventure has been some really bad stomach upset again, the kind he usually only gets when he has bad bacterial overgrowth, a virus, or an infection. We’re treating for the bacteria and watching for the others. So far, two lab tests have confirmed his white counts are normal, a sign that there is no infection or illness in his body… So we are just hoping that the antibiotics help his gut get back to “normal” soon.

I know we’ve been really spoiled lately with good health. But I’d still prefer not to whiddle down my “never” list any more in the near future, as far as Patrick’s health is concerned at least.