Transplant Day 149 and how liver enzymes meant a weekend in the hospital

Hello from “The Hotel on the Hill.” If you are new to our blog, this is the nickname for Primary Children’s Hospital which is situated in the foothills of the Wasatch mountains on the edge of the Salt Lake Valley.

We have been here since yesterday afternoon. Here’s why.

A few weeks ago, Patrick’s nurse checked his temperature when he came to draw his morning labwork and it was a little high. Later that day, his labwork showed elevated liver enzymes and a slightly higher white count. These two signs together usually mean an illness and we thought that maybe Patrick had a bit of a stomach bug. The numbers stayed high for a couple of days, then went back down. We called Nebraska Medicine and they said they would check some viral studies to see if something was brewing. No one seemed too concerned.

For the past several weeks, this pattern has repeated itself. Once or twice a week, Patrick’s temperature has gone up. His liver enzymes go up. Sometimes his white count goes up. Sometimes it doesn’t. And Patrick never got sick. And no one ever seemed really worried.

Well, this Tuesday, when they checked Patrick’s labs, his liver enzymes were up by almost 100 points. His white count was normal this time. His temperature was 99.7. He was acting fine. But they also finally got around to those viral studies which showed no concern for the viruses they suspected might be to blame. Also, Patrick’s prograf level was a touch high and the transplant team decided to drop his dose by half.

I texted Patrick’s local doctor, Dr. Jackson, to let him know about the change and that night he called me.  He suggested that the one other thing we hadn’t checked for was infection in Patrick’s central line.. maybe some small amount of bacteria seeded there. So the next morning Patrick’s home nurse came by and drew cultures and repeated liver enzymes and prograf levels. The liver tests came back pretty early. The enzymes that had been high were the same, but another marker was now up, too.  And Saturday morning, as we were getting ready for the day, we got a call from the GI fellow on call who said that Patrick had tested positive for a line infection.

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Well, Patrick was still feeling fine. So we asked if we could still take him to the Make-a-Wish easter egg hunt we had gotten him up early for. Then I called Dr. Jackson to figure out how exactly to proceed. We talked about starting treatment at home, but Patrick needed some vancomycin.. a drug we have a love/hate relationship with because it clears infections, but Patrick’s pretty allergic to. It gives him a rash, so he has to have benadryl. It also makes his belly quite sick and we didn’t know how a new gut would take it.

So, we made a plan to bring Patrick inpatient for the weekend while we start antibiotics and figure out what comes next.

Because he is still so soon after transplant, we are making our first stay in the cancer/transplant unit, or immune compromised unit. (ICS). At first, I was worried they might kick us out after we went through all the work to make an infection-risk-minimal admission. They don’t accept transplant patients after the initial immune suppression and they didn’t know us and thought maybe someone was sneaking us in. But once they heard “5 months since transplant” it was ok.

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They are experts with central lines here, which is nice. They don’t do g-tubes or ethanol locks often, though. Apparently only short gut and related GI diagnoses get the full gammut like we do. So there’s still some teaching to do.

The nice thing is that they keep the rooms super duper clean and, really, the nursing staff here is in general a little more experienced.  The techs are really on the ball making sure things are cleaned up, diapers charted, extra food collected, teeth brushes, baths given, etc. There are things in this unit that I would have killed for in Nebraska. Like washing machines down the hall. (Last night Patrick had a diaper leak and they just showed me to the washing machines so I could clean it up.) And bathtubs. Patrick was very excited to take a bath here this morning. And needleless hubs with scrub caps and a policy of scrubbing the hub for a full 15 seconds and then letting it dry.

The room is smaller, but these rooms feel like home. And the parent bed is comfy. And the view is spectacular. And the cafeteria is just downstairs and still serves most of our comfort foods, even though they’ve just remodeled.

So it’s different, but it’s home.

This has been a very long week. We are all very tired. Monday night, my cell phone rebooted and wouldn’t load its operating system afterwards. Brian plugged away at it every chance he got, but there was no fixing the problem. So I had a few panicked days where I could see abnormal labs but couldn’t text as I normally do to communicate with Patrick’s medical team. Thankfully, Google has amazing customer service and pulled off a warranty exchange before Friday.

Tuesday night, I started to get an ache at the back of my throat. I hoped it was allergies, but was pretty sure it was a cold. I woke up sure I was sick. So I masked and gloved up, stripped and washed all my bedding, did as much laundry as possible, clorox wiped everything in sight and just tried to muddle through with as little exposure to Patrick as possible. It took round the clock mask-wearing, lots of handwashing, lots of running outside or to another room to sneeze or cough of blow my nose, and lots of picnic lunches (so I could eat without breathing near him) to get through the week. Thank goodness family was in town visiting. Two nights in a row, Brian took Patrick to dinner with his family, leaving me home to rest, clean, eat, and breathe mask-free.

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I was still sick and masked yesterday when we came up here. I was almost afraid they wouldnt’ let us into this unit with me sick… but I’m following the same precautions the rest of the staff here does so it turns out it was ok.

Thank goodness I am better today, though. My ears are so tender from wearing a mask all day and night that I can barely stand to wear my glasses and putting a mask on this morning to walk Patrick to the playroom almost made me cry.

It hasn’t been a better week for Brian, either. Coming home from work and taking Patrick away immediately is not easy for him. And he has some some busy weeks, preparing for some organizational changes heading his way.

So we were beyond grateful yesterday morning when Patrick’s doctor asked if we’d like to wait and come into the hospital at 1:00. We had promised and easter egg hunt and we had a great time. Make a Wish throws a great party and no one looks twice at you wearing masks and gloves and not eating any candy. Patrick was so very excited to meet the Easter Bunny. We got his face painted. We had a great time in line with the clown making balloon animals. (Have I mentioned Patrick loves clowns?)  The egg hunt was only mildly interesting to him. He gets tired walking still and so running around hunting eggs wasn’t the most exciting idea.

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The eggs were filled with candy and Patrick was a bit disappointed. But we knew we were headed to the hospital and were feeling generous and Brian had a coupon. So, we offered to let Patrick trade his candy for a prize and we headed to the Disney store.

We talked briefly about heading home and doing our chores but opted for some family fun time instead. We started at the Disney store where Patrick picked out a Mickey Mouse train set. Then we went to a built-to-order pizza restaurant and let Patrick design a cheeseless pizza. He loved it and scarfed it down and packed up his leftovers to go.

We left the mall and went for a walk around Temple Square. If you’ve never seen the gardens at Temple Square around the time of LDS conference you should, Especially in spring. They are amazing! Tulips and fountains and pansies and flowering trees raining white petals everywhere.
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Patrick did what all little boys do… walked the borders of every fountain and ran away and climbed up into the bronze statues.

And then, it was time to come up to the hospital.

And it was strange being admitted to a new place that is different but familiar. We had an ok night. Patrick didn’t nap on schedule. Not a surprise. But after they gave him benadryl at 5, his eyelids got droopy.

I turned on a broadcast of the LDS Women’s Conference right after Brian left to go get things cleaned up and packed up at home. They started off with a video presentation of a song that Patrick knows from church, The Family is of God. View the video here. Knowing he loves these things, I pulled him up on my lap to watch. He snuggled right down and his eyelids started to droop. The song ended and I told him to stay cuddled and I’d get him a show on his tablet. Well, his tablet was slow and before I had a show loaded, he was asleep. He slept on my lap for 2 hours. I got to bask in a quiet evening of gospel and sisterhood and uplifting messages about the importance of motherhood and womanhood and family. The entire conference is available to watch, read, or listen to here. Largest women’s conference in the world. Totally worthwhile and inspiring if you have time.

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And then, he woke up was very mellow the rest of the evening. We watched movies, played with syringes, cuddled on the bed. At 11, he seemed tired enough finally to sleep so I turned out the lights and he was out in 5 minutes. He slept all night except for diaper changes and woke up with the sun. (Much to my chagrin).

Rounds came early this morning. They said that he had immediately responded to antibiotics and his liver numbers were already trending down. No cultures have grown out, though, from the labs drawn right before antibiotics were started and we can’t quite explain it. The doctor suggested that another option for the off liver numbers being bacteria from Patrick’s gut gettiing into his liver through the gastric bypass created at transplant. I guess we’ll explore that more.

But the long story short is that Patrick seems to be responding well to treatment and shouldn’t be hospitalized long. And we’ll have more conversations about the cause of the problem and the fate of his line in the future.

It’s been a quiet Sunday. Patrick is so much calmer in the hospital now. I don’t know if that’s from practice being in the hospital and entertaining himself alone or because his sensory processing disorder is less of a problem since transplant or because his nurse last night started giving him all the used syringes and passed along in report to continue doing so and he has like 30 of them now, plus extensions to connect them to and that always keeps him happy. But he’s quiet and once we’d all had a nap we were all happier.

That was a lot of story to tell. I really should blog more often so you don’t have as much back story to read through. Oh well.

“Do you know deep in your heart that your Heavenly Father loves you and desires you and those you love to be with Him? Just as Heavenly Father and His Son, Jesus Christ are perfect, their hopes for us are perfect. Their plan for us is perfect, and Their promises are sure.” – Carole M Stephens, Relief Society General Presidency, LDS General Women’s Conference, October 2015

 

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.

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.

 

Transplant day 92 and the importance of education

So I don’t have much of an update for today. Patrick’s gut is needing more time to recover so feeds are advancing only very slowly. He might make it back off of TPN tonight. We’ll be here till at least Sunday. We are stir crazy and sleepy, but getting by.

But, with all this extra time, I thought I’d take a minute to write one of those blog posts I’ve been meaning to write for a while. Today’s subject: education.

I have a friend who is a high school guidance counselor for at-risk kids. We had a long conversation the other day about how easy it is to give up when life gets hard and how she sees Patrick’s story as an example. Of not giving up. Of trying to stay positive.

I told her I hoped it also could be an example of the value of education. See, one could argue that I sit around in a hospital room or at home most of the day. I am a stay-at-home mom. What good did my expensive and time-consuming college degree in Spanish and Teaching English as a Second Language do me? Couldn’t it be said that bad luck or circumstance or whatever robbed me of opportunity? I’m not climbing any career ladders. In fact, my resume probably is pretty unimpressive right now.

Except, well, that that isn’t the case at all. The very best thing I could have done for my current situation was to get an education.

Today is my mom’s birthday. And I need to give credit to my mother. She taught me by example that an educated and involved stay-at-home mom was of great benefit to her children and to society in general.

I use my education every day. Small examples: yesterday I had the cramped crowded hospital room cleaned in extra detail because I have made friends with the woman who cleans it. We speak in Spanish. I have enough friends in similar circumstances to not take her for granted. And so when I told her I was feeling cramped and cluttered yesterday, she gave me some extra time.

But it’s more than that. Here are some reasons I am grateful for my education.

1. I learned how to learn. Can I tell you how important is to be able to study out a problem by myself? Patrick needs to start a PPI medication to help prevent future ulcers. (Think Pepcid.) When the prescription went to my pharmacy, they called and said the liquid medication wasn’t formulary. (That means in the list of covered prescriptions.) They also said that starting February 1st, no medications in that drug class would be formulary because they are available over the counter.

So, I went online and and I looked up my insurance company’s drug formulary. I found a list of all of the different types of medications that my insurance would cover. I read up on how each different variation might work differently. Then I called the insurance company and explained why the medicine was needed and why nothing in the approved drug formulary would work to treat the risk of ulcers for Patrick right now. I also explained how no over-the-counter options could work for him.

It worked. My case manager took the issue to the decision makers and by the end of the day they had approved coverage for him. Even in spite of the policy change.

The hospital pharmacist paid me a visit the next day, and also paid me a high compliment. She told her students, “She is really good at knowing her prescriptions and coverage. Don’t expect that from other patients.”

The thing is, I wrote a lot of research papers over the years. I learned how to study, understand a new subject, and then put what I learned into a useful argument. (I took a persuasive writing course that has been especially useful.)

2. I can communicate with doctors on their level. I know that doctors don’t mean to talk down to patients. But I can tell you that they do talk differently to patients and caregivers who have an education. If they don’t have to spend time building a really basic understanding, you will be given more opportunities.

Would you believe that they have patients who don’t know how to use measuring spoons? Have to be taught by a nurse. Or who can’t stick to a schedule enough to give certain frequent medications at home. If it seems that we “get away with” doing a lot of treatment at home, it isn’t by coincidence. I am starting with a more solid base.

3. I use my general education all the time. I was a language and humanities girl. I did well in math and science, but didn’t like them. Guess what? I use math and science all the time. I remember sitting in the PICU after Patrick’s cardiac arrest thinking, “Boy I wish I’d paid better attention in biology.” Now I am learning and paying attention to a lot of that. Can you tell me what dose in milligrams a medication is if you’re giving 2 mL of a 15 mg/mL solution? Yup. that’s algebra. Calculating a replacement fluid dose and rate? Multiplication tables in your head. Trying to figure out how much of which foods to give? Gotta understand osmolarity. This humanities major does a lot of math.

4. I know how to use language. Every industry has its jargon. If you talk the talk, you get more respect. You get less than 5 minutes with the doctors for rounds. In that time, they will read off a lot of medical information boiled down into language that makes it quick to communicate what is going on with a patient. Then, you can either spend your time having that translated to you… or, if you speak the language, you can use it to ask your questions and make requests.

I am asked all the time what my medical background is. Guess what? Just Patrick. But I have a good background in latin and greek roots so it doesn’t take long for me to learn words about anatomy or to learn from their roots what different medications do or are made of. I learned this jargon quickly and that means I know how to use it. I never feel like they are talking over my head. And that means I can be a part of the conversation.

What’s more, I’ve had to do a lot of learning how to reword my language to help Patrick’s behavior. Communicating with a child who has cognitive delays, language delays, and behavioral problems is challenging. It takes completely relearning how to use language to get your message across. It took a lot of time having therapists work with me to learn how, but it makes a HUGE difference for all of us.

5. I can teach my son. This last is probably the biggest for me right now. The version of “Free Appropriate Public Education” being offered through homebound education right now is laughable. Earlier this week, for whatever reason, Patrick’s teacher appeared, decided Patrick was unfocused and would like to be doing something else, and he left. If I didn’t know how to teach, Patrick would be completely behind. We spend time every day working on writing and reading and counting. It not only helps pass the time, but is filling in the huge gap left by our current situation. It means I can grab the moments when he is ready to learn and teach, even if that happens at some random hour in the middle of the night.

6. I can help others. Speaking spanish. Knowing how to cook and to sew. Playing the piano. Understanding doctors and short gut. Being able to research and know how an illness is spread and protect others. Knowing how children learn. Understanding computers. Having a strong scriptural foundation for my faith. All of these skills put me in a position to not just survive myself, but to help the people around me, too. No matter where I am.

I don’t mean to sound arrogant in any of this. What I’m trying to say is this… Education is never wasted. Whatever you learn, makes your life better. I am not working in the workforce.. but I use my education every day.

“If a person gains more knowledge and intelligence in this life through his diligence and obedience … , he will have so much the advantage in the world to come” (D&C 130:19).

So if you’re thinking that right now you’ve been dealt a rotten hand and you can’t do anything to make the situation better. If you’re wondering if it is worth trying to excel in the mandatory subjects at school that you just can’t imagine a real life application for. If you’re thinking it would be better to just give up and focus on surviving right now…

It is worth getting an education. I promise. It is.

Now back to the current application of my education… trying to understand how reaching 90 days post transplant and the end of our insurance company’s umbrella transplant pricing contract is going to change how services will be billed.

Transplant day 86 and Sick, sick, sick

Well, I think it would be safe to say that the past 48 hours have been among the hardest we have been through. Friday, Patrick seemed to be feeling better. Well, except that he still had very frequent, black diarrhea (sorry, remember, blogging about intestines here, remember.) The team explained that bleeding in the GI tract wasn’t unexpected in an immune suppressed patient wasn’t entirely unexpected for an immune suppressed patient with Norwalk, a.k.a. norovirus.

Otherwise, Patrick was happy and playing all day. However, as the day went on, I started to feel worse and worse. I made a bit mistake by eating a great big, yummy burrito for dinner. About half an hour later my body told me that, yup, that tender tummy feeling meant that I had caught what Patrick has. Not a big surprise, given just how often Patrick had gotten sick while I was holding him the day before.

Well, my sweet husband saw that I was looking worse and worse and, even though he was also starting to realize he was sick, sent me back to the Ronald McDonald house for the night. Good thing, too.. I am sure I wouldn’t have been able to take care of Patrick at all that night. I was SO sick! But, on the way home, I stopped at the store and picked up medicines and gatorade and I spent the night trying to pull myself together enough to be mommy again in the morning.

And, amazingly, by morning even though I felt very weak, I was doing well enough to go back.

It sounds like Brian and Patrick had a pretty rough night.. changing diapers every couple of hours. When I came in, Patrick was laying on the couch and looking quite pale, but happy. I sat down next to him and asked him how he felt. He said he was ok, but I’d check again every few minutes. Then his nurse gave him his morning medications. I asked how he felt, Patrick said, “sick!” and then started throwing up blood.

We put his g-tube to drain so he wouldn’t throw up anymore.. but that kind of seemed to be the kick off for a rough day. Not long afterwards, he started to act as though his belly hurt. That got worse and worse throughout the day. (We think it was stomach cramps and maybe gas.) But at its worst moment, Patrick was screaming in pain, curled up in a ball, and not willing to be touched.

Finally, they got some pain medicine to stay down and he fell asleep, which made a difference.

Because of the bleeding, they decided to give him a transfusion. Those run over several hours and we let him rest while it was running. His color started to come back. For most of the day, Brian and I took turns laying in bed with him holding his hand and helping place stethescopes and thermometers so he trusted they wouldn’t hurt him. (This was a good way for sick mommy and daddy to rest, too.)

Meanwhile, we sipped gatorade and slowly started to eat again.

Then, once the transfusion was done, we made him get out of bed to be weighed. I hate doing this: making him get up and move when he’s in pain. He just clings to my neck and begs me not to hurt him. But moving helped his body reset a bit and over the next couple of hours, his pain started to improve.

By evening, Brian told Patrick we needed him to get up and walk again. We got him out of bed and he sat on the couch playing with toys until almost 10.

And last night, he slept peacefully all night. That was amazing. We ALL needed the rest.

I am feeling 80% better this morning. Patrick’s pain seems to be gone, though he is really guarded.

The plan discussed with the team yesterday was to take him down for an endoscopy today if the bleeding hadn’t stopped. Patrick’s diarrhea has slowed. But his g-tube has been to downdrain and there is still blood there and in his occasional diaper, so I’m assuming that is still going to happen. I know he was put on the schedule yesterday because someone from anesthesiology already came to talk to us.

I am trying to find the right way to break this news to Patrick. I’m sure he’s terrified of anesthesia here because it has always ended in surgery. Not sure I can explain to convince him otherwise.

But I hope we can find some answers that will help him finish getting better. We knew taking down Patrick ostomy meant more endoscopies and so this is going to be a part of his new routine.

I hope that all of us being sick together in the hospital doesn’t become routine. Sure, it’s nice that we can pick up a phone and order food and the nurses really have been kind to all of us. And, since he’s in isolation, we at least aren’t putting anyone else at risk visiting here. (In fact, it’s probably better than hanging out at the Ronald McDonald House). BUT I don’t want this to be the precedent for the new normal in illness after immune suppression.

We know illness is going to hit him hard every time and be hard to shake. But hopefully the next one doesn’t take down the whole family. Right now, we really hate Norwalk.

Transplant Day 84 and norovirus

Let me preface this blog post with a warning. You are reading a blog about intestines. Intestines make poop. Also, when intestines get sick, all kinds of bad things happen. Patrick got sick today. And we have blog followers who have enough medical need-to-know that I will be writing about yucky poopy things. If you don’t want to read about yucky poopy things, then know that Patrick was admitted to the hospital today with norovirus, an intestinal virus, that has made him very sick and with his compromised immune system is dangerous. We don’t know what this means for him or how long we will be here, but he is feeling yucky and scared, but so far ok.

Now, disclaimer done. Here is how today went. Patrick went to bed happy last night. In fact, so happy that he laid in bed and tried to learn about rhyming words with me for an hour. He was still sleeping well at 2:30 when I refilled his formula. But at 5:30, when he woke up, he sounded pretty unhappy. This is a usual time for him to request me to come lay with him. So I went and laid down with him and he slept until 6:30 when he started doing all kind of things that he knows hurt me and wake me up.

I am a slow learner and forget that this behavior means that Patrick is trying to get attention because something is wrong. He was obviously was exhausted, as we all were, so I kept trying to get him to sleep and he would for a few minutes at a time before pulling my hair or pinching my fingers or banging his hand down on my face again.

At 7:15 I decided that we weren’t going to get enough sleep if I got him back to sleep, given it was lab day, so I got out of bed. Something about Patrick’s smell made me think he needed to be cleaned up. So I took him immediately to shower, much to his displeasure.

Well, he wouldn’t stand up straight. Just kept leaning on everything and was very whiny and then, as I took off his diaper, I noticed that he was acting queasy and that his belly looked kind of round. I poked. It was hard.

So I grabbed a diaper and I told him I thought he needed to poop. He did. And he went and he went and in seconds the diaper was full and his legs were wet and, given that Patrick’s stool has been solid or at least mushy for weeks, I knew something was wrong.

But now he really needed a shower. And a shower actually seemed to make him feel better. Brian and I talked and decided that maybe Patrick had eaten something he was allergic to the night before, as he’d been in the mood to try all kinds of new foods.

So we got him dressed and watching TV on his bed and we cleaned up the room and got dressed. And at 8:30 his nurse came and he seemed fine.. But then we made him sit up so she could listen to his heart. And he threw up all over both of us.

She managed to get labs drawn, but by the time she left, we could tell that Patrick was more than just a little bit sick. So, I called and left a message for the team and we stripped the bed and started some laundry and got permission to eat in our room.

Finally, around 10, the nurse coordinator called me back and asked me what our instinct was. I told her it seemed like a virus. But that I didn’t know what that meant we should do. She consulted with the nurse practitioner who calls the shots, and then called back to say that they wanted him to come in.

Checking in wasn’t easy. Even years after our zip code was changed, the computer system here seems to hate our new zip code.  It took over half an hour to get Patrick registered and meanwhile he had to go again, and made quite the puddle in both of our laps when his diaper leaked.. and he was trying his best not to throw up. And finally the woman at the desk called it good enough and brought us upstairs while Brian stayed to try to sort out the registration.

They did a full workup when we came in with cultures and viral panels and stool cultures. We just heard back that Patrick has norovirus. This is a pretty common and contagious stomach virus that, for many people, would cause an upset stomach for a day or two. It has a reputation for floating around the Ronald McDonald House.

For Patrick, on immune suppressants and with a brand new intestine, we don’t know what it will mean. For today, it means smelly liquid stool and nausea and a low-grade fever. He has spent the day laying in bed.. sleeping some. Whining a lot. Begging for water. And lying and saying that he is “all better” and “I feel great.” He’s on IV fluids and not allowed to eat or drink. Once he got an IV bolus of fluid, he started looking and feeling better. He is arguing over everything and saying “ow” or “stop that” over the slightest touches. (Not sure they hurt. He may just be defensive.) I think he’s finally past the initial anxiety of the hospital admission.

So the plan for now is to wait. There is no treatment for norovirus. Just need to make sure that he stays hydrated, that he absorbs his prograf properly, and that they watch for inflammation that might put his graft at risk. He’ll stay in the hospital, in isolation, until this virus passes.

The hospital is very full. We are in the last room, a tiny, outdated, smelly room with construction going on just the other side of the wall. This could be a long wait. But at least we have a room.

We are bummed that another daddy visit is being spent in the hospital.

I’m a little bit worried, knowing how contagious this bug is and just how many changes of clothes we’ve been through, that I am going to catch this and then I wonder just who will take care of Patrick if I can’t.

But only time will tell. We appreciate your ongoing prayers. We know that miracles are wrought by prayer. We have seen it over and over again in the past few months. So please keep those prayers coming.

Transplant Day 72 and Discharge Again

I just tucked Patrick into his bed at the Ronald McDonald House. Tonight, at least for part of the night, I will sleep in a bed by myself. The spot on my arm where Patrick likes to snuggle all night that is beginning to be deeply bruised is very grateful for this development.

It’s been a busy couple of days. Yesterday, I got up early and started begging often for them to find a volunteer to come sit with Patrick so I could fix the battery problem with my car. It took till afternoon, though, to find someone. So I was a nervous wreck all morning.

Finally, I explained to Patrick why I was acting frustrated and suggested maybe I should pray to calm down. Well, the next thing I knew, Patrick folded his arms, bowed his head, and said a little prayer that a “vodateer” (volunteer) would come so I could fix my battery. Not 10 minutes later, one walked in.

So then I made a mad rush to get it done. I called my insurance policy’s roadside assistance. (Thanks to my mom for pointing out that I might have that service on my policy.) They sent “Rescue Rangers” to come give me a jump start. Because I was in a parking garage, the guy showed up in just a regular sedan. (Tow trucks don’t fit in this garage.) And when he hopped out with a jump starter, I was pretty doubtful. But his was better than mine and the car started right away.

I drove to AutoZone and told them I thought my battery needed replacing. He grabbed his tester, but one look at the battery told him that it was gone. (I kind of knew that.) So he sold me a new one, then installed it, cleaned up all the corrosion, oiled my screws, and checked my other fluids. I expected the help putting in the battery, but not to that level.

With the car now happily starting despite frigid temperatures, I drove back to the Ronald McDonald House to get Patrick’s feeding pump so he’d be ready for discharge.

He had a pretty good night, as far as hospital nights go. And this morning, we slept in and laid around in bed being lazy. But eventually they came to clean his room and check his vitals and look him over.

Rounds were a little bit late. That actually helped a bit because it made the rest of the day seem to go faster. They confirmed our plan from yesterday that he could leave the hospital today.

A couple of hours later, they had a problem with Patrick’s feeding bag and I suggested that we just switch to his home pump. From that point forward, I couldn’t get him to stop running and running away. He was so happy to be free. (And feeling so much better.)

While they worked on getting orders, Patrick and I went for walks, ate soup, played in the playroom. It got late enough in the day that I called Patrick’s school teacher to tell him we wouldn’t make it back to the Ronald McDonald House and ask him to come to the hospital instead. And just as we were wrapping up with school, they came to say they were ready for discharge.

We left the hospital about 3:30 and stopped at Jimmy John’s so we’d have some food for dinner. (Patrick loves Jimmy John’s bread and with his new appetite, happily dipped and entire 2 foot long day old loaf in bread and sucked the broth out of it.)

Getting settled here again was more work than I wanted. It takes time to unpack, do laundry, put away a month of medical supplies, etc. But eventually, I got it all done and we wandered downstairs for a late dinner. Patrick is so happy to get to walk away from me a bit and to visit with his friends here. That felt really REALLY nice.

The new formula is easier to make, which I’m especially happy about. Doing meds again was much more second nature. And we even managed to change the dressing on Patrick’s incision with minimal fuss. I got him into bed by 10 and asleep before 10:30.

I’ll admit, it was kind of sad to come back here. When we were here last, we were still in that post-Christmas happy state. Brian was here. It was lonely coming back and knowing we need to put away Christmas is kind of hard. I’d leave it up, but really this room is tiny and with all the new toys, I need to get the Christmas decorations out of here.

Here are some pictures from this hospital stay. I wasn’t really great about uploading them so they cover a few days.

Transplant Day 70 and real-life angels

God does notice us, and he watches over us. But it is usually through another person that he meets our needs. – Spencer W. Kimball

Brian flew home Monday. I was kind of worried how this would play out as the last time he left while Patrick was still inpatient, I found myself feeling in well over my head trying to juggle caring for Patrick and trying to piece together little things for myself like food and clothing and bathing.

However, instead, I’ve found the last couple of days almost relaxing. An important lesson I’m learning here is to let people help me with little things so I can be free for the bigger things. For example, Monday morning a hospital volunteer knocked on the door just as I finished dressing Patrick to ask if I needed a break.  So, she came in and played with Patrick while I took a shower, did my makeup (a rare luxury), made the bed, and cleaned up the room.

This week has been full of volunteer angels. From church, I find women I barely know (have met a few times or not at all) providing meals or coming and sitting with Patrick so that I can go back to the Ronald McDonald House to eat or shower or do other things. There is an after-holiday lull in charitable donations and so fewer meals are offered at the beginning of January than throughout the rest of the year. So, one evening while a lady from the Relief Society (church women’s organization) was introducing Patrick to the joys of a fart machine, I hurried back and made up a week’s worth of taco meat so I’d be ready for days I either couldn’t get away or nights where dinner wouldn’t be waiting.

This has been a blessing I can’t put into words. I am not unhappy that in our first month here, we ate such carefully portioned meals, a-la Hormel no refrigeration required microwave dinners, that I lost several pounds. But sometimes it was hard to be patient with Patrick and happy with this 24/7 mom/caregiver role I’m living because I was hungry. But right now, I am anything but hungry. I have to think to not end up being fed dinner twice. I haven’t even touched the supply of meals I bought right before Brian left because there has always been another one there someone has made for me.

But beyond food, this has given me the chance to keep up on laundry (with a little bit of help from a friend willing to fold and slip into my room my clothes if I can just get them to the dryer) and to stay showered and in fresh clothes (which I find goes a VERY long way to my general sense of well-being), and sane. I get an hour or two here and there and in it I try to be as productive as possible. I probably look like a mad-woman flying through the Ronald McDonald House when I go there.

Patrick is happier with this help, too. Someone appears offering help and he shoos me away to “the House’ so he can play. Patrick needs people. He loves when someone comes and he has someone new to play with.  He really loves the volunteers who come help Child Life with activities. We had an awesome time the other day flying airplanes with the ROTC. Right now, Patrick is one of just a handful of kids old enough to play with, so they are especially excited to see him, too.

It helps so much to have people. Tonight, I got a call from a woman from church who is quickly growing on me, saying that she had some time and could she come play with Patrick so I can get out. I almost felt like I was taking advantage because I’ve been so well taken care of, but I’ve sworn to myself to accept help when offered. So she came and I almost didn’t even leave because it’s -3 with a wind chill of some other horrid number and everything is closed here as a result. But I remembered that Patrick’s been running a touch low on diaper cream and I had one more jar of his preferred kind at the house, so I went to go.

But, when I got to my car, it just wouldn’t start. I’d turn the key and it sounded almost like it was sighing. I had a jump starter in the trunk, but even that didn’t help. It just showed me my battery’s power dropping from 60% to 40% to unreadable.

So I came back in and I bought diaper cream at the outpatient pharmacy instead. Then I called Brian and I called my dad to assess the symptoms. And then i came back to the room feeling a bit beyond alone and helpless. Only I wasn’t alone. There was this sweet angel from the ward making playdough P’s with Patrick on the floor. And she listened to me talk through my problem and she offered all the help she could think of. And then she just talked for a while which is something I am REALLY missing here… talking to grownups and especially friends of my own faith.

And things felt lighter going to bed. In fact, Patrick and I stayed awake and giggled and talked for a while. Sometimes, he and I get playing a little more like it’s a sleepover. And last night he told me that when he grows up he wants to be a firefighter and put water on things. And that when I grow up I want to be a doctor… not like the ones in the hospital, but like the toy one in his Duplo block set that he got yesterday.

Which reminds me of another super nice thing that strangers did for us. Right before Brian left town, he discovered a couple of Christmas presents hidden under the bed that we’d overlooked on Christmas morning. Well, they couldn’t have been more perfectly planned if we’d done it on purpose.

When we got married in December, I was really sad that the wedding and honeymoon took up most of the Christmas season for us. So we decided to extend our family’s Christmas holiday like they do in Europe. There, the 12 days of Christmas actually start on Christmas day and are counted forward until January 6th, also known as Epiphany. Or, in Italy where Brian was a missionary, it’s called Befana.

So, we have celebrated Befana. We leave out our shoes and a good witch fills them with little gifts. After Patrick went to sleep Monday night, I snuck down to the C store and picked up some treats for my shoes, then I put the newly found presents and some chips and a book into Patrick’s. And when he woke in the morning, we had our own little holiday. And he got a couple of fleece sweaters that have been perfect for these bitter cold days. And he got some duplo blocks that have proven to be great entertainment, too.

General Patrick update.. Tonight, they turned off his TPN again, hanging some IV fluids to keep him hydrated. He will reach full enteral (through the belly) feeds on Elecare Jr. tomorrow late afternoon. They will check some labwork in the morning and we’ll start talking about discharge again. (Which means that I will also be making some phone calls in the morning to see if my insurance’s emergency roadside service can help me fix the battery issue so we have a way to leave here.)

Patrick feels great. I’ve learned to change the dressing on his surgical incision and will need to still do that for a few weeks. He is not a big fan of the job, but has gotten so he doesn’t cry the whole time.

We spend our days mostly playing. Today, they got the playroom ready for patients to play in. It is still missing locks on the toy cabinets, so you have to have help and permission to play there and have to keep the door closed while there. But that just meant that Patrick had to have 3 hours straight playing there instead today. And the room all to himself.

While he played, I downloaded more of his homeschool materials and the hospital teacher helped me print some readers. A “cold day” made it so Patrick missed his post-holiday return to school this week.. again. He’s only had 4 actual “school days” since we got here. I just learned a couple of the ladies from church homeschool and I am getting ready to pounce and pick their brains to figure out how to make my mommy school efforts even better.

We’ve been working on just one more goal here. A few days ago, Patrick was complaining that his left leg and ankle hurt. This isn’t the first he’s complained of it, so I asked for a physical therapy consult. She came seeming ready to assure me my concerns were over something normal that would pass. She watched him walk and stand on tiptoes and squat. And as we worked, she shifted from telling me that his hip looked weak but would get better to a genuine concern about what she was seeing. This is somehow maybe related to his cerebral palsy and we don’t know if it’s really a new problem or just one made worse by recovery.

She gave me some exercises to try to get Patrick to do.. lifting his legs to the side and walking on his heels. Because of his dyspraxia (motor planning troubles), this seems really, really hard for him as he’s never tried to move that way before. At first, he just wouldn’t. But I’ve figured out that I can turn it into a game of silly walking mother-may-I or a “can you do this?” challenge and he’ll play along.

Nevertheless, my plan of doing occupational and feeding therapy only with my limited visits while he’s outpatient is kind of disintegrating. If this problem doesn’t go away before we leave here, we’ll need to do some follow-up therapy. And I really need to find the number and call and get that scheduled.

I think Patrick feels more in control of himself here at the hospital. Maybe because the rules and routine are more predictable. Maybe because he’s spent more time here. Maybe just because his medication levels have been steady while he is here. Maybe because it’s not Christmas anymore. Maybe it’s because he can order ham and chicken broth for every meal. Or because my attention is less divided and all of the ways he acts out are him trying to have my undivided attention. I don’t know for sure, but I’ve also been using the extra time I have with helpers here trying to pull together some picture schedule and behavior reminder resources so going back to the Ronald McDonald House can maybe feel less chaotic.

Regardless, I can see that our time here is special and important. And I am beyond grateful for the helpers who have let me use this time well instead of just trying to survive each day.

 

Transplant Day 38 and Look Mom!

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Patrick has been DYING to get his hands on this statue of Robert Frost since he first saw it. We also visited Thomas Jefferson and some other sculptures today.
Patrick has been DYING to get his hands on this statue of Robert Frost since he first saw it. We also visited Thomas Jefferson and some other sculptures today.

‘m blogging at 3:30 p.m. because I expect Patrick to sleep all afternoon. He had a pump alarm at 5:30 a.m. and the nursing staff tried to pull a “while you’re awake” rush at vitals and other care. The result was that he was wide awake, and since labs were due half an hour later.. well, he was up. But I wasn’t ready to be up, so I we talked and agreed to turn on Blues Clues so he wouldn’t wake up the neighbors and then I layed down and slept while he watched. I’ve decided that, given that insomnia is a well-known side effect of steroids, I need to just go with the flow when he can’t sleep and this is one solution that has worked.

The problem is that this worked almost too well. Patrick would wake me every 10-15 minutes or so and tell me something about his show. And I’d tell him I’d get up at the end of the episode.. then I’d fall asleep again. It was like I was a teenager with a snooze button again. I slept till 9.

But it worked for us today. When I got up we were productive. Bath. Dressed. Playtime. Meds. Cleaned up the room. Zofran worked so when he got up, he felt fine.

Rounds came early. The doctor heard Patrick’s number and looked at me and said, “Well, do you want to go out?” He was entirely sincere, I think. The resident, however, got this panicked look on his face and said, “The coordinators (transplant coordinators) said not on the weekend!” I knew that really they need tomorrow to pull things together the right way and kind of laughed it off. It’s good to hear that they are earnestly considering discharge, though.

We’ve had a good day so far. The morning kind of dragged. Hospitals are so quiet on Sundays. We did a little bit of primary (Sunday School). It didn’t go over as well today. Patrick’s body was saying “move” and so sitting talking wasn’t going over so well. Singing time was a little better. I bought a little app that plays the church songs with a bouncing ball over the words and I sing along. He mostly just watches me. But I did get him to try and repeat one of the Christmas songs. And we watched a couple of videos. Today we talked about the resurrection and Patrick hands down refuses to believe that Jesus died. He knows “He is just ok, mom!” So I tried to explain that He died and is alive again and we used some exam gloves to demonstrate the spirit in the body and not. But I think this concept is still beyond him, oh well.

Because Patrick was needing to be up and moving, we went to the playroom. I set up bowling. He took one throw, then grabbed a chair and told me bowling was better sitting down. Yeah, his body is saying move, but it’s also saying “Gee, I’m tired.” So we tried bowling from a chair and that didn’t work so well. So we tried just sitting on the floor rolling a ball back and forth which worked better, but wore him out pretty quickly, too. He got up to play with magnets and his feeding pump started to alarm because it had run dry.

He ran away so fast once he had a backpack on that I could barely catch a picture
He ran away so fast once he had a backpack on that I could barely catch a picture

Today, though, that was good news. I asked his nurse this morning how she’d feel about letting me use Patrick’s home pump for the afternoon. That way, I could practice with it, Patrick could get used to it.. and we could take advantage of how dead the hospital is on a Sunday.

No sooner had I put the pump in the bag than Patrick was asking for it on his back. And with it on, away he went! He just about ran out the door without me.

We went all over the hospital today. We went up to the NICU where the rooftop garden is. The garden doors were locked for the weekend. (BOO!)… But Patrick insisted on playing on the flight of stairs leading up to them. He long flight made him huff and puff, but he found a set of 4 steps that he declared were “easy peasy.” And, easy or not, he tried them a few times.

Then, we decided to walk over to other hospital building called Clarkson tower. Think walking from Primary Children’s to the University of Utah… only with the connecting corridor being about 2-3 times as long. We had to stop to take a few breaks. Thanks goodness for benches and Christmas trees along the way. But he made it… and at one point, he shouted, “Look, Mom! I’m runnin’!” And away he went down the hall until he couldn’t go any more.

We visited the chapel. We played in the guest pavilion. We found every Christmas tree we could muster. We passed the attending surgeon on the way and he gave Patrick a HUGE smile. (Bet that wins some discharge points.)

He claimed to really like this view. I think he really liked the window ledge to rest on.
He claimed to really like this view. I think he really liked the window ledge to rest on.

We washed our hands about a billion times. (Patrick is more than happy to wear a little portable hand sanitizer around his neck and wash his hands as well as the hands of anyone else standing near him.) We practiced pushing elevator buttons with wipes and with our elbows. We talked about what it’s safe to touch and what’s not safe to touch.

Learning to be immune suppressed is going to be a big stretch for Patrick. We’ve always said that Patrick was fragile, but needed an immune system and so we have exposed him to as much as possible before. Now, the opposite is true. Before, a cold would have taken him a while to recover from but he could fight it. Now, he might not be able to fight what for us is just a mild virus.

So hand washing and mask wearing and no touching and germ fearing and crowd dodging are going to be our norm. At least for the immediate future. The transplant team here has told us not to keep him in a bubble. But also to be careful. And right now we may be erring on the side of too careful… But this recovery has also gone too well and we don’t want to risk undoing that if not undoing it is even an option.

We came back to the room to take the sacrament. Patrick has really taken to the young men’s president who brings it. He just squeezed his way right into his arms today. And for the first time in weeks, he swallowed the bread.

Of course, he also has had 1/4 cup of chicken broth and a few bites of pasta today… all his own idea. There may be hope of eating yet. Especially once we get outpatient and the foods are safe and familiar. If I can just figure out how to teach him it’s ok to swallow now.

Anyway – I expect we’ll wrap this day up with a video chat with Daddy and the family at Sunday Dinner back home in Utah. We’ll make our Christmas advent ornament while we watch the annual Christmas Devotional, one of my favorite holiday traditions. And then bedtime might be a bit late because Patrick will have napped late. And if all of that holds true, this post will auto post at 9 p.m. tonight.  (If not, you’ll never even know I wrote this last two sentences.)

But for now, with Patrick napping so deeply, I might as well see if I can get a few things done just in case we do make it out of here tomorrow.

Transplant Day 37 and Saturday is a special day

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Well, despite the rough night last night, we have done our best to make today a better day. It still started out iffy. I woke up with a tremendous headache and a backache, too, because Patrick found the button that turns off the auto adjusting mattress. I thought this would be better because it wouldn’t keep sinking on my side every time I moved. However, without that extra inflation, sleeping pressed into the corner of the bed with Patrick on my arm just made my back hurt.

But, at 9 I managed to sneak out of the bed with him still asleep and take some pain medicine and have the morning conversations with the doctors and nurses without waking him for a little. I also got on Amazon and used our Prime account to order a few of the supplies that we desperately need for discharge that I just don’t see how I’m going to make it to a store to buy. (If you don’t know this about my faith.. we don’t shop on Sundays. Goes back to the 8th commandment where it says not to make your servants work on the Sabbath.) Sure hospitals are 24/7 and medical emergencies force my hand from time to time, but we try REALLY hard to stick by this principle and not many any more people work for us than necessary on Sundays. So shopping had to be done today or it won’t be done. But back to the story..

The team rounded early. That was nice because it meant I wasn’t stuck here. There were no changes in the plan. Just trying to get the right medication dose. Alas, at 4 p.m. we learned that the morning dose had been low still. That means that tomorrow and Monday’s levels have to both be in the target range because we need back to back good values before he’ll be ready to go.

I did get one thing right, though, in my advocating for his care. I asked the nurse to give him his zofran an hour before the time he usually wakes up. And, for the first time in 2 weeks, Patrick got up without being nauseous. That made a HUGE difference for how the day went. Getting him ready was so much easier because he felt good enough to sit up to get dressed and for his bath. I think that’s going to be a daily change for a while.

At 11, Patrick’s nurse managed to round up a volunteer for me. There may be only one who comes on Saturday, so this was a bit of a miracle. I hurried off to the Ronald McDonald house to try to address the very serious problem that I was out of clean clothes. I ran into another transplant mom I know there. She offered to help get my laundry dry and to my room which was a HUGE blessing. The washing machines at the RMH are slow and you just can’t really finish laundry in the 2 hour window a volunteer can stay.  So I got the clothes in the washer and then collected the day’s delivery of packages. (I wonder if they hate me, we have so much come mail order.)

Today’s shipment was an assortment of medical supplies and a set of small plastic food storage containers. The latter made me very happy as it made it much easier to raid the leftovers from last night’s dinner at the Ronald McDonald House and bring them here for lunch.

I even managed to get back to the room on time.

Patrick and I had a good afternoon. We had lunch and then attempted a nap. (But failed attempts at sleep can sometimes make sleep times for the next several attempts harder. He didn’t nap. And just now, bedtime was harder than usual.. though he did make it so sleep pretty quickly once I told him I was going to go blog so I wasn’t a distraction.)

We are running into some sure signs that Patrick is feeling like himself again. He doesn’t want to sleep away from home. It’s getting hard to get a good blood pressure reading because he won’t hold still. The room is cluttered with bits and pieces of his toys and crafts. I am spending most of my time just watching trying to keep him safe.

We did make it to play in the playroom a bit this afternoon. We ordered up dinner from room service. Patrick has been excited to try their roasted potatoes and did as good of a job tasting them as he ever does. I am hopeful we’ll make more progress once we get outpatient and I can cook for him.

Then, this evening I decided to double our evening walk. Last night as we walked to the cafeteria, we saw that they had put Christmas lights in one of the outdoor gardens. So today we walked down to that garden to see the lights. He only got tired and asked to be carried once. (Goodness is he heavy with these weak muscles!) He didn’t last long outside, but he made it all the way back after just a short break and was even kind of skipping/jumping along the way. I have good intentions to bat my eyes and see if I can’t get a nurse to let me “practice” with his portable feeding pump in a backpack tomorrow and see how far he can go if the pump battery doesn’t die and bring us back.) One nice thing about the hospital being dead on the weekends is that it doesn’t seem as dangerous to go play in the halls.

We read some books using the Readeo account his Uncle Mark bought him, and then put him to bed. Like I said, he tried to play and stay awake. This is also typical, feeling-himself Patrick behavior. But his little body needed rest and he was out within 5 minutes of me biting the bullet and saying I couldn’t lay with him because he was trying to play with me.