Category Archives: Patrick

Some big changes

It’s the beginning of a new era for the Hoopes Family. Our lives are filled with packing, cleaning and painting right now. Why? Well, because as of Monday, we own a new house. It’s about 20 minutes north of here in a quiet little neighborhood.

I can’t remember if, when I was writing about Patrick’s tonsils, I also wrote about his name having come up in the lottery for a special needs charter school. I was so buried in tonsillectomy recovery with my husband out of town that all I could think to do that week was complete the required paperwork.

Well, things settled down a bit and we decided we’d better figure out what needed to be done to know if we wanted Patrick to attend that school. I’ll be honest, my first impression was that I didn’t want to give up all of the great things I had going on right then and didn’t see any reason at all to move.

BUT I did follow through by setting up some school tours and meetings with the school principal. And, well, given the length of the drive (and the added complication of having to use the freeway for the commute,) I decided to look around the neighborhood in case Patrick did great at the school and we wanted to consider living closer.

Well, from that moment on, we just couldn’t seem to leave the investigation alone. A house caught our eye, we looked it up. Found flaws. Then another appeared. I couldn’t stop thinking about it so I drove out to see it. It wasn’t right. Nor was another. And we didn’t really think we were house shopping. Just getting to know the neighborhood.

Until… Brian spotted one nearby but NOT in the neighborhood we were looking at. We did a walk through and as we talked about it we could see so many great things for Patrick’s future in that house. A quieter neighborhood, proximity to parks, proximity to a great school, space for a bedroom downstairs and away from us when he gets older.. and the list went on and on. As we talked, I was filled with this sense of total peace.

So before we found an answer about the school and just 2 weeks after even discussing the possibility of moving, we put an offer on a house.

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The rest has fallen into place very quickly. Through a ton of quick work, we cleaned up our house, did some staging, held and open house. And found a buyer. In fact, not just a buyer but one we’re really excited about selling the house to so we don’t feel quite as guilty for leaving. The financing came through in record time. The sale came through without a hitch.

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And so by the end of this week, we’ll be moving. I’m not ready. It’s gone SO fast! And I’ve got just this week (one Brian’s working evenings in, even) to repaint the entire basement, finish packing, be present during Patrick’s last 2 weeks of school, tie up loose ends with PTA and church.. and be ready for the movers to come on Monday.

 

I am exhausted and I hurt everywhere. And there is so much still to do.IMG_20180515_192417.jpg

That brings me to another new thing in our family. Mostly, another new thing for me. Remember that post a few months back where I said that I just kept developing tendonitis everywhere as I tried to get in shape? And did I mention as I wrote about Patrick having EBV that we think I had it too?

I know I didn’t mention that at the end of November one morning I woke up and I just couldn’t walk. My knees were swollen and unsteady and it felt like I was ice skating. It took about 4 weeks to finally get to the point of doing cortisone injections which restored function pretty immediately. Except that things weren’t quite right. Not in my knees. Or my wrists or my elbows.

Well I finally got enough of a moment of quiet to go to the doctor who said, no, none of that is normal results of going from inactive to active. She ordered several blood tests looking for autoimmune diseases and other things.

And, well, one came back positive.

As it turns out, I have rheumatoid arthritis.

Our theory is that it was kind of there latently.. but when I started to exercise it brought it to the surface. And then, when I got sick (possibly with EBV) it triggered the auto-immune response.

RA is a lifelong, chronic illness with some pretty scary possible outcomes if left untreated.

The good news is, it’s one of the ones they are having success in treating. And we caught this quite early, we think.

So with immune suppressants, my new doctor thinks that he’ll be able to put the disease into remission and really minimize it’s effects.

It’s scary. The drug I am on is some very serious stuff. I’m now scheduled to have labs and follow up visits as often as Patrick is. This is a HUGE life change.

On the other hand, I’ve only given myself just one shot of the new medicine and it gave me 3 wonderful days with very little pain. The doctor said that in about 3 weeks it may be built up enough in my system to be considered remission. And it’s great to know that this hasn’t been all in my head, or because I was out of shape, or wimpy, or bad at taking care of myself.

And I’m thankfully so very busy with the move that I can’t really think too much about it right now.

It’s been such a whirlwind that it’s kept me, in part, from thinking too much about all the things that we’re leaving behind. I did lie awake fretting about that a lot at first. We really do have a beautiful home with wonderful neighbors. I’m going to miss my kitchen, my gardens, just being in the neighborhood of my family.. and most of all, I’m going to really miss my friends.

The only thing getting us through is this amazing peace that I feel whenever I drive out to our new home. The Lord is providing that in ample doses. And I know it’s where Patrick and we belong.

Transplant Day 1,214 and Tonsils

This is a bit of a catch up post and it may be long. I write today from Patrick’s bedroom. He is lying in bed watching Cars 3 running a Powerade drip into his g-tube on day 5 post tonsillectomy and adenoidectomy.

Patient Zero

How did we get here? Well let’s rewind to the day before Christmas break when I noticed that I had a fever and a horrible neck ache. It likely started with me, though it was Christmas break and I never did get diagnosed with anything more than a virus causing crazy swollen lymph nodes.

The Onset

Mid-January, Patrick got sick. We thought at first it was a cold. He had an ear ache and I took him in to urgent care to be checked with me for an ear infection where we were told it was just one of many viruses, no ear infection. But he got sicker and sicker and on the 3rd day when he refused to eat and I looked and saw the size of his tonsils all covered with white spots, I took him to the pediatrician. She ran a strep test, which came back negative. And we were told again to just go home and wait out the virus.

Sometimes I’m good with that answer. Especially with a kid who’s immune suppressed. But sometimes the mommy spidey sense goes a little crazy. (Ok, ok. It’s actually the extra guidance mothers sometimes get through the Holy Ghost when their children need help.. but we call it mother’s intuition.) Anyway, this time I didn’t feel settled with that answer. So I texted Patrick’s GI and told him what was going on and asked if he had any concerns from a transplant perspective. He called me back almost immediately and told me that he wanted to know what was making Patrick sick so we could stay ahead if it was one of the big viruses that are dangerous for transplant patients.

Diagnosis

So the next morning at 7 a.m. Patrick and I headed up to the hospital’s outpatient clinics where Patrick’s doctor met us and arranged for labwork, an exam, and a viral panel. It was a long morning with a couple of hours of tests. And then we headed home. By evening, all of the preliminary viral tests had come back negative. Despite the brutal flu season, Patrick didn’t have Influenza, RSV, or any of the other circulating respiratory viruses. The doctor said good news. I felt even more at a loss.

Meanwhile, Patrick just kept getting sicker and sicker. We camped out in the basement and I had to start using his g-tube to keep him fed and hydrated. He was miserable. I was exhausted. And I just kept checking for lab results because as the day went on, I became more and more convinced that with everything else ruled out, that Patrick must have the Epstein Barr Virus (EBV), commonly known as Mono.

Sure enough around 4 p.m. the results for that test came back positive. I texted the doctor and said “what’s next?”

Some history

I’m going to take a break in the story here to make a confession. Part of the transplant workup is a very long afternoon where you sit in the room with a transplant nurse and they explain to you in detail all of the risks associated with transplant. You’re aware of a few of them. Of course the risks of surgery. And rejection. Susceptibility to illness. But there is so, so, so much more that comes with immune suppression and transplant. Activity restrictions. Diet restrictions. And perhaps the worst is something called Post-Transplant Lymphoproliferative Disorder (PTLD).

PTLD is caused when a patient who didn’t have EBV before transplant. When they catch this virus the first time while immune suppressed, it can cause the lymphatic system to go a bit crazy. It involves into a form of cancer called lymphoma. So, yeah, transplant can lead to cancer.

And the day that sat us down and talked to us about all of these restrictions and risks, especially this one, we were so overwhelmed by the understanding that the treatment called transplant was much more of a trading in of problems than the cure all the happy ending stories on TV had showed us.. we were so overwhelmed that we couldn’t even stand to talk to anyone that day.

3 years later in another evaluation, we knew this information was coming. But it was still hard to hear and even harder to talk about. So, well, we didn’t. We just warned you that transplant wasn’t a cure.

PTLD workup

Returning to the current story.. I talked to Dr. Jackson in the early evening and he reminded to me that more than my immediate concerns about having a kid with mono, we needed to be thinking about PTLD. I thought we’d set up testing within the next couple of days. But when he called back just after we put an exhausted, sick Patrick to bed to stay he wanted us to come in to be admitted the hospital right away, we were a little caught off guard.

And so we advocated for the value of rest and protection from other illnesses and Dr. Jackson consented to try to set something up outpatient.

But at 5 a.m. he texted and said that admission was the best way to make sure Patrick got in for a CT scan right away. They needed a CT scan of his entire body to check to see if there were signs of PTLD. And he said to prepare to stay for an emergency tonsillectomy.

So that’s what we did. Headed in prepared for the worst and hoping for the best.

Patrick did amazing in CT. We thought he might need to be sedated to hold still. But then decided that he is most cooperative when he’s helped to understand what is going on an given a chance to cooperate. When he feels in control. We got lucky in that we were able to get Patrick’s favorite child life specialist there right on time to go down for the scan with us. And though he was nervous, he was very brave and still.

In the end, the CT scan came back negative for PTLD. (Though it did describe in pretty amazing detail the way that Patrick’s vascular anatomy has changed as a result of his lost central venous access.) So they treated him with an IV antibiotic for a raging ear infection they discovered when he came in. And we got to go home.

Getting better

Patrick actually did get better pretty amazingly from the EBV. His immune suppression is pretty low right now because he’s had no issues with rejection. And so the virus mostly ran its course in a couple of weeks. The blood tests went from virus counts in the tens of thousands to “unquantifable” low levels.  Patrick’s appetite and energy came back. And the doctors agreed that Patrick had had just an acute case of EBV and had fought it off.

However, his tonsils stayed big. Not just a little enlarged. So big that they were touching each other big. So large I couldn’t understand how he could swallow big.

And, well, EBV is a tricky little virus. I’ve learned a lot about it over the past month. And one of the things I’ve learned that there’s a family of viruses that stays forever in our DNA. Chicken Pox, herpes, and EBV. That’s why you only catch them once. That’s why they are sometimes reactivated when we are stressed. (Shingles, cold sores, “mono makes you tired for months!).

And because EBV lives mostly in the tonsils, their not getting smaller was a problem both clinically and because it meant a long-term greater risk of PTLD.

Meeting with ENT

So we scheduled an appointment with an Ear, Nose & Throat doctor who took one look and said there was no doubt. Patrick’s tonsils were huge and even without transplant concerns, they needed to come out.

We didn’t spend the visit discussing the need for tonsillectomy. We spent it talking about the problem of pain control when ibuprofen wasn’t allowed. Because that’s one of those lifetime commitments you make with transplant.

Tonsillectomy and adenoidectomy

So Patrick had his surgery on Thursday. We were told 30-45 minutes for the procedure. That’s what I expected, too. I’ve sat in lots of surgery waiting rooms watching ENT doctors go in and out every 30 minutes as they reported about placing ear tubes and taking out tonsils. I often wished I could be one of those parents whose concerns were as brief and uncomplicated as those parents. I felt a bit arrogant at times that I was the one who knew the waiting room attendant by name. Who came to stay there.

So it was strange to be in that “simple procedure” role. Except that, of course, we weren’t.

The doctor came out after a little more than an hour to finally tell us that the procedure was done. That the tonsils really were huge enough to need to come out and that the adenoids were even bigger. That Patrick was doing well, but there had been some “oozing” that had made the procedure a little more complicated. And that he’d be awake soon.

And then an hour later, when they still didn’t call me back to the PACU, despite our insistence that Patrick needed us there when he woke up of he’d be combative and inconsolable, the phone finally rang for us. It was an OR nurse who explained that Patrick had continued with “oozy” bleeding and they’d spent all that time trying to get it stopped.

So we waited some more and the doctor finally came back out to say that things were finally settled. And he thankfully hadn’t needed a transfusion. In all, the procedure took 2 and a half hours. We were at Patrick’s side to help wake him, and then moved to post-op.

Observation

Patrick was what they call a status A-11. Meaning he wasn’t admitted but he wasn’t discharged. He had 23 hours that he could stay for observation without having to involve the insurance companies for authorization. So we spent the night in Post-Op Recovery.

Patrick was really inconsolable as he first woke up. He just cried and whimpered and wouldn’t talk. Would barely open his eyes. Finally, I left the room to go to the bathroom and as I listened, I realized he wasn’t as much in pain as he was just angry. So I tried a crazy approach where I came in and told him to stop pouting. Then tried to distract him. I made him start taking sips of water despite protest then pointed out that it helped more than it hurt.

It amazingly worked. His anesthesia wore off. His pain meds kicked in. And he woke up sore but pretty happy. We ordered dinner and he wanted some. And soon he’d eaten 3 yogurt cups and drunk some Kids Boost. But the anesthesia made him nauseous and he couldn’t keep much down.

The night was rough. We turned on the movie channel and let it play all night and would doze off and wake again. Eventually as the anesthesia wore off his pain overwhelmed his hunger and he stopped eating. He’d fall asleep but the swelling in his airway made it so his oxygen levels would fall and the monitors would alarm and wake him again. Or he’d start coughing. And his temperature started to creep up very slowly.

But we made it through the night. Post-Op was so very quiet. Our nurse was great. And by morning, I thought we were in pretty good shape. I even though we might beat the odds and go home at 23 hours after all.

And more observation

When ENT came to check in, they decided they’d like to take a little more time to observe. So they moved us to a big comfy room in the surgical unit. And we watched. And what we saw wasn’t exactly comforting.

Not having ibuprofen was proving to be problematic. See, ibuprofen is an anti-inflammatory and inflammation is a big issue with tonsillectomy. It can cause fevers. It can cause airway narrowing. And of course, there’s the problem of finding a balance with pain control when you have to use an opiod.

It took the whole day and night to get a handle on using the g-tube to keep him hydrated and his gut moving, to figure out how to help his cough and keep his saturation up. And to make sure the fever wasn’t getting worse.

They did a chest x-ray to rule out pneumonia. But did advise us that with that long of a procedure, Patrick’s lungs would need help to refill the air sacs.

Home again

But after a second night, we finally reached a stable baseline and headed home. The first day home Patrick was just exhausted. He fell asleep anytime he held still. Wherever he was. They warned us day 3 is the most painful and, well, it was.

Yesterday, he started to perk up a little after a good night sleep. I finally was able to convince him to start sipping some water. And he even ate a little bit of macaroni and cheese. Which wore him out.

But he started to play and tease a little bit. It was good to see his smile back. And our bird, Max, followed him everywhere he went.

He fell asleep by 5 p.m. But that’s good as his cough has gotten worse again overnight. But his pain is a little less, he’s more awake. And before I finished this post, he happily though tentatively ate some KFC mac and cheese for lunch.

This recovery is a slow process. And unfortunately, Patrick’s having to do it the hard way. As caregiver, I am very tired. Sleep, food, and personal care have been hard to come by.

But we’re getting there. And it’s only supposed to last 7-10 days.

And on the other side, my son is acting completely loving and smitten with us, instead of his usual independence seeking self. I’m going to soak up every minute of a cuddly loving boy who just wants to be with me. Because soon he’s going to really be too big to hold on my lap for half an hour.

I hope to post more updates. But remember, as always with this blog. Usually the times I’m quietest are the times that are calm. If I’m not writing, it probably means that we’re busy and happy.

Transplant Day 804 and Look Ma. No lines!

**Composed yesterday in the surgery waiting room**

This is a good news post. But I’m finding myself so very out of practice at writing updates in the surgery waiting room that I am having a little bit of a hard time getting started.

At 7:30 this morning, we kissed a very drugged and giddy Patrick goodbye at the O.R. doors. He is having his port removed today. We haven’t needed it in a while. We left him with a central line because this his veins are so scarred that putting in a new line will certainly be difficult. This port has been so much healthier than any other central line he’s had before. And it saved him trauma with labwork. We didn’t feel any rush to get rid of a line

But this summer Patrick’s bloodwork started to come back so stable and consistent that his decided to switch labs to every other month, the port became more effort and risk than benefit. (They have to be flushed every 30 days regardless of if they were used.) We knew we’d need to have a talk about removing the line soon.

Last October, we took Patrick for his annual transplant checkup. When we raised asked the doctor if we should be considering taking the port out, he was surprised to find it was even still there. There was no question that it was time. Soon… But of course, we still took our time.

We allowed time for the doctors here to talk to the folks in Nebraska and know what would be involved in removing a direct superior vena cava line. We tried to wait for the end of cold an flu season.

But also at Patrick’s follow-up in October, the doctors decided to stop Patrick’s prednisolone, which was a major part of his immune suppression. Within two weeks, he started to have a severe pain in his side. After about a week, a small bump finally formed. And when we took him on a rollercoaster ride, that bump burst revealing a small abscess.

For some reason, one of the dissolvable stitches in Patrick’s ostomy scar never dissolved. It just stayed there as long as his immune system was heavily suppressed. But as soon as the prednisone was gone, his body started to rebel against a foreign body. He’s had a recurring abcess for several months now. Just a little pimple that would rise and fall. But it hurt like crazy. And that’s what finally got us here.

So here we are. An hour after Patrick went back, the surgeon was back out to report that all had gone well. He’ll have a little bit of an open wound where the abscess was an a pretty sore area on his chest until the space where the port was heals.  But overall, this should be pretty easy.

We’ve taken the port for granted for the past year or so. That makes this transition a little bit simpler. But the simple realization that Patrick has IV line for the first time in his life is a little bit disorienting.. miraculous.. scary.. comforting.. umfamiliar.. splendiferous!

Now not every fever could mean sepsis. Now he’ll have to have labs drawn from the shoddy veins in his arms. Now we won’t have to wake up early once a month to apply numbing cream before the port is accessed. Now we may not have numbing cream at all. Now he won’t have to protect his chest to play. Now it matters more if he eats and drinks. Now we won’t have to worry if a clot is forming. Now he may not automatically qualify for nursing. Now there’s one less thing that makes him different from other kids.

But really, it’s about time. Because I keep forgetting that it’s time to access his port. And I keep forgetting to tell doctors he even has one. He really didn’t need it anymore.

I’ll leave you with the words of a song that Patrick is singing or making me sing at least once an hour right now.


“I feel better, so much better
Thank you doc for taking all the ouchies away.
I didn’t feel so good till you fixed me like I knew you would
And I feel better. So much better now.”

It’s great to be 8!

On Monday, Patrick will be celebrating his 8th birthday. 8! 8 whole years! And 2 whole years since his transplant!

I’m working hard to pulling together his birthday video. We’ve had a big and busy fall so it’s going to be a little late this year. But it’s just astounding to see how he has grown in the past year. In every way.

The year after transplant, Patrick’s body was shocked and he didn’t grow. But this year we can barely keep up with his clothes. We upgraded him from the only bed he’s ever known, one of those crib-bed combos, because he had gotten too tall for it. His clothes are a medium now and he’s in that awkward size 13 shoe that’s right between little and big kid styles. He is just inches below my shoulder now. And honestly, sometimes I turn around and am surprised to see that he is still small because he feels so big.

He’s grown a lot in spirit, too. For the time being, we have hit upon the perfect mix of medications for his ADHD that keeps him calm and focused while still letting him be his boisterous self. (His psychiatrist warns me he will outgrow these doses soon, but for now they are working.) That has given him the opportunity to grow in a lot of other ways. To sit still and listen and understand. To have his own ideas of how to do things and then to stand up for them. He is becoming more helpful, more responsible, more patient.

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He is still the amazingly compassionate child we have always known who is endlessly concerned for the happiness of others. He is the first to give a hug when someone cries. He remembers others’ needs he heard of throughout the day in his prayers. He can tell you all about each of his classmates favorites. And he sees the best in even those who sometimes seem the most different.

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With glasses helping his vision, Patrick has grown into a voracious bookworm. He reads all the time. Bedtime reading time is non-negotiable and he’s often found on his bed looking at books. His reading fluency is growing by leaps and bounds. He reads everything to me. And is pretty darn good at spelling. His handwriting is really getting better which is very impressive in light of the fact that he is right-handed and his brain injury has left his right side fairly weak and uncoordinated. He doesn’t like math. But if he forgets to protest because he doesn’t like it, he’s even getting the hang of addition.

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We bought a trampoline last spring and Patrick can often be found in the backyard jumping. He went from not jumping evenly with both feet to starting to do jumping tricks. One of our favorite summer passtimes was to go into the backyard and alternate between jumping until he was too tired and reading Dick and Jane. He’s discovering joys we didn’t think possible like bike-riding and swimming.

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He earned his Tiger Cub Rank last month and most of the available beltloops. He’s excited to move on to Wolves and we hope he’ll be as happy and welcome in his new den as he was in the one we left. He had a wonderful experience at scout camp this summer. Patrick loves scouting and I love what it teaches about being a good boy and growing into a good man.  He is really trying to be trustworthy, loyal, helpful, friendly, courteous, kind, obedient, cheerful, thrifty, brave, clean, and reverent… and HUNGRY.

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We went to a Patrick’s annual follow-up appointment with his transplant team last week. They were so happy with what they saw in him. The first thing the surgeon said was “well he has changed since we last sawl him,” commenting on how tall and grown-up Patrick seems now. While Patrick sat on Dr. Mercer’s lap and took pictures on his cell phone, we reviewed his diet, growth and medications. With everything going so well, Dr. Mercer decided that Patrick may not still need steroids to prevent rejection. They gave us instructions on how to gradually wean him off of them and the acid controller that they have made necessary for him, too.

He gave him the all-clear for sports. (Adaptive baseball here we come, we hope?) And we decided it’s time to start planning to remove Patrick’s port. With things so stable, they think that he can soon only need labs 4 times a year. That makes the port not worth the risks. Still need to talk to the doctors here about how to go about that.

 

With so much growth, we faced a big choice for Patrick this year. In the Church of Jesus Christ of Latter-Day Saints, 8 is the age at which children are generally considered old enough (accountable) to be baptized. We believe that younger children are innocent and unable to sin and repent, therefore baptism is not required for them. Most 8 year olds are able to understand enough about the gospel, baptism, promises, and repentance (if not more) to be able to decide if they want to be baptized. Living in Utah, where the church is so prevalent, 8th birthdays are a really big rite of passage.

So we have been watching. And studying. And praying. And finally a few weeks ago we met with our Bishop to talk about baptism. By that interview, the answer was fairly simple. We decided that Patrick is still not at the same level as most 8-year-olds. Right now, he is still innocent. And so, for the time being, he will not be baptized.

For those of you wondering about the doctrinal implications of this, the Book of Mormon teaches:

Listen to the words of Christ, your Redeemer, your Lord and your God. Behold, I came into the world not to call the righteous but sinners to repentance; the whole need no physician, but they that are sick; wherefore, little children are whole, for they are not capable of committing sin; wherefore the curse of Adam is taken from them in me, that it hath no power over them;

To be clear, Patrick has a very strong love for Heavenly Father and Jesus. Just this morning he refused to get out of the car because I’d forgotten to say a morning prayer and he wanted one. He wants to be baptized. And we believe that in a few years, he’ll be ready to understand and make that choice.

For those with logistical questions: Because we believe Patrick will someday be able to be baptized, we are not doing any replacement baptism celebrations. Those things can wait a couple of years so he can appreciate them. For the first time in his life, something can wait. He has years ahead of him so this is ok.

I’m going to throw in a separate bonus post about this decision, but in light of an 8th birthday, I thought at least this much should be answered for now.

Instead of 8th birthday traditions, we are going to do something that Patrick has rarely experienced in his life. We are going to have a plain old ordinary birthday. With terminal illness, then transplant, birthdays have always been a bit unusual. This year, Patrick’s school is celebrating Halloween today and not next week so he won’t have to share except for trick-or-treating. It’s a long weekend. We’ll have cake and present with family at Sunday dinners. We’ll go to an amusement park on Saturday so he can ride rollercoasters and drive cars. We’ll send treats to school We’ll decorate with a banner and balloons. I’ll make him his choice of dinners. And we’ll have cupcakes and sing to him and open presents. Just us. Just boring. It will be wonderful.

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Because he is wonderful. And we have been blessed with a little bit of ordinary. And for Patrick, ordinary deserves to be celebrated.

8 years, buddy! I am so proud of the boy you are becoming.

Scub couts

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Somewhere along the past few years, my husband became a scouter. Ok. To be honest, Brian is an Eagle Scout. But he wasn’t really into the whole scouting as an adult thing. And then he was called to the Stake Young Men’s Presidency, and then as the President. In the Mormon faith, that means that he oversaw the program for boys age 12-18 in several congregations in our area. A large part of that work is a partnership with the Boy Scouts of America.

So, because he wanted to do the job well, he attended the trainings and round tables and other events he was supposed to be at. And, over the past few years, Brian went from reluctant scout leader to a bit of a scouter.

A couple of weeks ago, we went to the District Award of Merit banquet. Brian had earned some awards for his work and training as district commissioner and they were being presented there. He was presented his commissioner’s key and arrowhead and then I settled in thinking we’d enjoy watching others recognized for years of service with District Award of Merit. And then, as they started reading a bio, Brian nudged me. They were describing him. We were both quite surprised. He was touched to have been considered. And I’ll admit, that I was quite proud of my husband.

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Well, it turns out he needed to go pick up a couple of patches for the commissioner awards so the next Saturday found us at the scout shop. And, with Patrick turning 8 and the blue and gold cub scout banquet coming up, I figured we’d let Patrick come inside so we could start to talk up cub scouts a bit.

Well, right as you walked in, there was a cardboard cutout of a cub scout in uniform. Patrick’s eyes got big. He didn’t know boys could have uniforms. And so I took him and showed him the real thing and he was practically drooling.

On the way out the door, Brian pointed out a flyer for a Tiger Cub’s Den. Tiger Cubs are 7-year-old cub scouts. The LDS church’s scouting program starts with wolves at 8. But if you want, you can pay your own dues and find a den and start early. Well, that got us talking and we decided that Patrick would really benefit from the chance to start scouts with a little bit more of the structure that’s available with Tigers. Parents invited. Simpler goals. And a little more organized of leaders. Not to mention the benefits of socializing with other boys his age, setting goals outside of school and survival, etc.

In short, we decided it was time to introduce Patrick to scouts.

Well, one morning I had some time, so I called Scout Headquarters and asked if there was a Tiger Cubs den near me. They surprised me by not recommending the den I’d heard about near us, but instead one about 20 minutes away. I don’t know if they just got their directions confused or if it was inspiration. But they gave me a name and a number.

So I called, and found myself speaking to a cubmaster who had a couple of special needs boys of her own who sounded more than willing to include Patrick. The schedule was right. They were kind of far from home but not too far from his school. I couldn’t have asked for picked better myself had I been given choices.

And so, back to the scout shop we went. Patrick was OVER THE MOON about buying his uniform. From Saturday to Wednesday he said several times a day, “I can’t wait till Wednesday!”

Wednesday came and we came home, did homework, ate dinner early, and headed out to den meeting. I think Patrick did ok. He participated in most of what they did. Wandered only when he didn’t understand the story being read. He earned an art beltloop.

Thursday, he carried his Tiger book around all day. He’s working on learning to read the scout oath. It’s kind of adorable.

And then Friday was the blue and gold banquet. We arrived late because we had attended the Provo City Center Temple openhouse. (More explanation later.) But on time for Patrick to be “knighted,” build a cottonball and tongue depressor catapault, and pull a sword from a stone.  Again, he is so excited to be a part of scouts.

He keeps mixing up the name. He calls is “Scub couts” or “Tiger clubs.”  But really that’s not bad considering he didn’t even know it existed until two weeks ago.

It’s going to be a bit of a commitment. We only have about 6 months to help him earn his Bobcat and Tiger. We get to drive in peak rush hour every Wednesday evening. We’ll be working on family goals in addition to what they do in meetings. But it is time for it.

It’s time for a little bit more of being a boy and a little bit less of being a transplant patient. Some of that living he went through so much to be able to do.

Transplant Day 33 and back to being a kid

You’re going to love this update.

Today has been a very good day. I got back to the hospital to find Patrick just waking up. One of Patrick’s primary nurses who loves him and really advocates well for him was back on today, so I knew things were headed in a good direction. We did our usual morning routine, including a bath that he didn’t want to do because he hates getting up and coughing till it makes him sick. But we got through it and then Daddy said it was time to go to the playroom.

At first, Patrick was just as fearful of walking. But we got into the playroom and he saw a toy he wanted and he couldn’t describe.. So he got himself up off the floor and walked over to his dad to get it. Yup.. We are 4 weeks post-transplant and his abdominal strength should be coming back. Apparently, the pain from Saturday’s surgery is getting better, too.

We stayed in the playroom for 2 hours. Part of that time, Brian went back to the room to pack. When finally I could tell he was getting bored by the number of toys strewn on the floor (where they aren’t supposed to be) I grabbed his wagon and suggested we go for a walk. From time to time Patrick gets a card with cash in it. This week, there was a book fair downstairs so I suggested we go pick out a book. He was really excited about this! When he saw the giant dry erase book, he was sold. Letting him pay with his own money for the first time was priceless.

Then, we came back up to the room and it was time to leave to get Brian to the airport. Patrick got to take his new book and go sit at the nurses’ station. They told me they were also taking him downstairs for craft time.

So, after saying goodbye for a few weeks to my husband and best friend (hard, no matter what) I decided I had time to do a little something for me. I’d heard that the casserole from last night’s dinner at the Ronald McDonald House was amazing and decided to go get some. (Yup. It lived up to the description.) Then, I went upstairs to our room and put a bedrail and mattress protectors on Patrick’s bed so it will be ready when he gets to go there. And I headed back to the hospital.

Well, I got there at 3:05 and found that Patrick was back upstairs in the playroom. And they had already gotten him a volunteer and promised him painting. I asked if he would like for me to stay and he said that, no, he’d like his friend to himself. So I came back to the room and did some things on my computer while he played for a couple more hours.

All told, Patrick got to decorate a Santa hat, make a bracelet, make a jingle bell shaker, paint some pictures, and just generally play with toys. Then he came back to the room and was ready for some myself time and spent another hour playing with playdough.

The ward (church) called a new compassionate service leader on Sunday. She called tonight to see if she could bring me pot pie. After having stuffed myself on chicken cheese stuffing casserole at lunch (thinking dinner would be light) I am going to bed with a super full tummy. Also, she is crazy super nice. She has only been in the ward a little over a year and got leukemia and had to have a bone marrow transplant right after.. so she knows this hospital and life being sick and being new in the area and the whole shebang. She made pot pie so I could have comfort food. Patrick loved her visit, too.

After dinner, I got him up and we went for another walk, and then climbed up into bed. We called grandma to video chat until I could see his eyelids dipping. Then the nurse came in, gave him his meds, and he went off to sleep.

Today Patrick is off oxygen and doing well enough we dared to take the cannula off of his nose. He is sleeping lying flat in his bed with both oxygen saturation and heart rate perfectly normal. This is a huge comfort for me as I consider trying to decide when it is safe for him to go outpatient. Breathing while I’m sleeping, check.

The other great news is that after needing to go back on TPN for a few days because of the problems with his stoma, they put him on full feeds and turned off the TPN tonight.

So, all-in-all not a bad day.

Transplant day 8 and a new room

Patrick woke up happy and friendly this morning at 6 a.m. During the night, he’d managed to work himself into a position where his head was resting on my shoulder, which made him as happy as can be. (He has an IV in his neck right now that makes it impossible for us to comfortably have him rest his head on my arm.) So, we found his tooth fairy money and we layed in bed and snuggled and talked. Then, the morning excitement came.

They don’t love sleep in the PICU. As soon as he was awake, they wanted to weigh him. I insisted they at least give him pain medicine first. But weighing is one of Patrick’s least favorite activities as it requires that he stand entirely on his own. Today, he managed to be weighed, but when I wouldn’t pick him up and carry him back to bed, he curled up on his knees on the floor and refused to move. It took some effort to come up with a way to coax him back to bed, but we eventually got here.

Physical therapy stopped by earlier today and asked about taking him to walk. We crafted a couple of plans that we thought might help motivate him. One of them included me offering him a wagon. But still, when it was time to get up, Patrick didn’t want to have any of it. Eventually, we just took him anyway. Once he got to the wagon, he’d earned a ride around the unit which brightened his mood and, with the wagon’s removable side, I was able to coax him to walk from wagon to bed a couple of other times during the day. Getting him out of bed 4 times in a day is a record.

Out for a wagon ride as a reward for a long walk this morning.

Out for a wagon ride as a reward for a long walk this morning.

There weren’t many medical changes today. Patrick’s hemoglobin was low following yesterday’s biopsies, so they gave him a transfusion. I hadn’t realized how pale he was until I saw him with color again. That meant an awful lot of monitoring by his nurses, though, which meant very little time for sleep.

I finally gave up and just sat out of sight at 2:30 and he fell right asleep. But he only slept a half hour before they came to finish up the last of the medications that had to be given in the PICU. They gave me a cart to pack all of our things on. (Would you believe this kid came here with just a suitcase that is still sitting back in my room? All of this has been accumulated in his week here!)

All but one bag on this cart represents things acquired by Patrick in our time here. Some are borrowed. Others are gifts

All but one bag on this cart represents things acquired by Patrick in our time here. Some are borrowed. Others are gifts

Then, they made a big fuss about getting Patrick ready to go and out of bed into his wagon. So I moved him to his wagon.. and then we waited, and we waited, and we waited because the nurse on the floor was too busy.

Finally, at 5, Brian texted to say that he had arrived back in Omaha and just a little while later, appeared in the room. Goodness, it was a relief to have him back.

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Not long afterwards, they finally came to move us out of the PICU and onto the Pediatric Floor. This is probably going to be our home for a while… But they gave us one of their bigger rooms which is going to be a whole lot more comfortable, assuming they leave us here instead of playing the hospital shuffle. I think this is one of the largest hospital rooms we’ve ever stayed in, complete with sleeper couches and a closet and a fridge.

It’s strange to have so little going on after such a busy week. Nurses pop in and out from time to time, but mostly we’ve been left alone.

I think we are all exhausted and looking forward to what will hopefully be a better night’s sleep. Now that Patrick has had his moving day, Brian and I will have ours. I understand there is a carload to get situated. Then we’ll see about settling into what we hope will be our home away from home routine for the next few weeks.

For anyone still looking to send mail, our room number is now: 6229. Mail time is currently our favorite part of the day.

Patrick picked this pose: sleeping in the wagon.

Patrick picked this pose: sleeping in the wagon.