Category Archives: Immune suppression and illness

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.”

February means…

Hi there! I’m typing to you from a laptop that is sticky with starburst fingerprints. It’s been quite the day. We’ll call it “February isn’t over yet.”

If you deal with chronic illness, especially in a child, you know that February is something to be greatly feared. Sure, I bet when you think of cold and flu season, you probably think of, oh, say December when everyone’s sharing colds around as they visit each other for the holidays. February is much, much worse. February is respiratory illness wonderland. it’s when the hospitals fill up to overflowing and they start putting beds in the broom closets.

According to Facebook’s memories, Patrick has been sick and often hospitalized pretty much every February of his life.

I wasn’t sure how we’d managed it. The children at Patrick’s school are walking around looking like death. Everyone we know has been sick. And yet, our immunocompromised superhero has been healthy.

Well… had been healthy.

This morning, Patrick did something he’s never done before. He told me, “Mom, I think I have a cold.”

Please note, this doesn’t mean he’s never had a cold. He’s had lots of cold. Doozies of colds. He’s been admitted to the hospital over many, many colds. But because of that exact fear. Being sent to the hospital… he doesn’t admit to being sick.

I was super proud of him.

And I decided to listen to him. Patrick really isn’t very sick. If he hadn’t said anything, you might not even know for sure anything is up. He is so good at pushing forward through things. But he’s been extra sleepy. A little grumpy. Restless. And has had a bit of a cough. Today, we added on an adorable nasal-y voice.

But, really sick or not, Patrick already had a checkup scheduled at the hospital at noon. And so he was going to attend less than 2 hours of school anyway. Which means no credit for the school day at all. And so – we kept him home.

One thing that all these years of medical surprises has taught me is how to throw all my plans to the wind and dive into super parent mode. I did pretty darn awesome today, if i do say so myself.

Because he wasn’t crazy sick. And because he LOVES schoolwork more than just about anything. And because yesterday we tried resting and watching TV which only led to a very restless child… I told Patrick he could stay home but only if we did school at home.

I let him take a longer bath and while he was in the tub I e-mailed his teacher to ask for a list of spelling words. I roped off Howie’s office, since he was working from home today, which is a huge temptation for them both. And then, while he played with toys for a bit, I hopped onto Teachers Pay Teachers and downloaded some freebie homework sheets for him. Some math. Some reading. A cut and paste word family page. AWESOME stuff! It is so much easier going and getting him relevant homework when I’m not trying to pull my own curriculum out of thin air.

And then, after doing a few pages of work, I pulled out the chromebook and i logged him into the websites that he works in during computer lab at school and set him to work. We had a blissful half hour where he worked independently! Then we went to the backyard and had “recess” and talked about what to do next.

Patrick voted that he wanted to eat lunch in the hospital cafeteria. Don’t fault us for unusual comforts developed over the years.

So we packed up early and drove off to the hospital. We started out in the outpatient building’s cafeteria but alas, they had a menu that was more fancy than comfort food… hospitals do that sometimes so the staff won’t get bored of what they eat. But thank goodness the main hospital cafeteria still peddles good old comfort food fare. We got Patrick a bowl of macaroni and cheese while I grabbed some deli-case sushi. (Again, don’t mock our comforts). Then we picked up two rice krispie treats and a carton of milk and booked it back to the outpatient building for his appointment.

We checked in, weighed in, checked vitals, and then set up lunch in the exam room. A family tradition.

The checkup went well. Our experiment in g-tube boluses of carnation instant breakfast has paid off in some weight gain. And, though they were a little disappointed to hear that his diet isn’t currently all oral, his doctor pointed out that “that’s why he still has a g-tube after all.” and the dietitian agreed that it might help train his stomach to want food at the times we’re giving him these extra feeds and that’s good. We talked about some longer term strategy.

And then Patrick talked his doctor into drawing him a picture of a monkey as a “prize.”

This appointment went remarkably quickly as far as GI visits go. We can sometimes be there hours. This time we were done by 1.

And so, not wanting to referee “don’t bug dad at work” time too much longer, I offered Patrick a field trip.

He’s been working on the astronomy-with-a-cute-name belt buckle in cub scouts, so we stopped at the planetarium to help him with that requirement. It was a madhouse. There were at least 2 school field trips there. But Patrick seemed relieved to run wild with the other children. And I still managed to point out and describe the planets to him, and telescopes, and other astronomy stuff. Then we stopped in the gift shop and let him pick out a bookmark/ruler with the planets on it. And amazingly, he was reciting some of the names back to me. He is very offended that Pluto isn’t on his bookmark, even though I tried to explain dwarf planets. Aren’t we all.

Anyway… home again and this time convinced him to take a nap.

He woke right on time for me to tuck him into my bed to watch Blues Clues while I threw together dinner and tidied up the house before our next appointment.

A nurse came this afternoon to officially admit Patrick for respite nursing through the Utah Medically Complex Children’s Waiver. This is on top of the other respite we already have and feels a bit splurgy. But it’s required for him to participate in the waiver. And it’s required that it be done by a nurse. So we are doing it.

Patrick was a total flirt with the admitting nurse and she played along beautifully. Meanwhile, I did my best to communicate a clear medical picture. You know you’re a medical parent when you know which diagnosis needs to be listed in each system. And when you provide a list of medications in writing so they don’t give a copy back to you.

Anyway… that done, I cooked dinner and Patrick played with the chromebook. Don’t tell him that we bought this thing largely for him. Because you can’t tell him it’s his. He wants it. But that means he wants there to be no rules about it. And besides, I like to blog here.

While dinner cooked I managed to convince Patrick to do one math worksheet. And then after we ate, we sat down and had him practice writing out his spelling words. I told his teacher I didn’t think he was being challenged and now he had 5 words again this week. Usually, that would be just right. Today though, he wasn’t feeling great and he wasn’t happy to do so much writing.

Bedtime finally came and he got exhausted quickly. We scrapped our Family Night plans and just worked together for a quick bedtime. Complete with antihistimines (he’s not allowed any other cold meds) and vaporub and a humidifier. He was asleep in minutes.

I don’t know what tomorrow will bring. Howie and I are for sure also coming down with something. And i’m not sure Patrick will be up for school tomorrow. But it’s labwork morning so we’ll be up bright and early regardless. Doesn’t hurt to see how being sick is affecting his body. And we’ll go from there.

If I don’t post soon, you can probably assume that Patrick slowly got better and needed lots of my attention, and then one day he was better and I looked around and realized just how much else I neglected while in super mom mode. Anyway – usually on this blog no news is good news.

Happy February.

 

p.s. If you want to know just how nasty the cold and flu season is at any moment in Utah, check out this website https://intermountainhealthcare.org/health-information/germwatch/

Happy Transplant-a-versa-hallow-birth-day Patrick

This post is quite belated. November was a challenging month which deserves its own post. But I would be quite remiss to skip over a post about Patrick’s exciting October 31.

This year was a huge milestone. Patrick’s 7th birthday. And the one year anniversary of his transplant.

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Last year, we spent Patrick’s birthday anticipating transplant. I had only just wrapped his presents and gone to bed when the phone rang telling us a donor had been found. Around midnight, we were our local children’s hospital being admitted and transferred for insurance purposes and bidding goodbye to Patrick’s faithful GI doctor. A little after 1, we boarded a life flight plane. We were awake (and tearful) all night, arriving at Nebraska Medicine around 6 a.m.

We caught a little bit of sleep and then tried to cram in as much birthday and Halloween celebration as possible. Around 1 p.m. they took Patrick down to have a central line placed and he was kept asleep for the rest of the day.

His long-awaited and sorely needed multi-organ transplant was an amazing birthday gift. The kind of gift from a stranger that still takes my breath away.

However, from a celebration standpoint, that wasn’t much of a birthday. And so, this year we decided that we had a LOT to celebrate.

So, several months ago, we asked Patrick’s transplant team if it was safe for him to celebrate in Disneyland. And they answered with a very emphatic “YES.” In fact, all but swore they’d do everything in their power to get him there. And so, we bought tickets and made plans.

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Parent teacher conference fell just right to give a long Halloween weekend. We left for Anaheim Wednesday night and I couldn’t help see both parallel and contrast as we touched down in the dark and traveled to our room exhausted from a late night of travel.

Here’s some of the highlights from the rest of the trip.

Thursday

We stayed for 3 days. In my mind, a day for each occasion: Halloween, Transplant & Birthday. When we checked into guest services to request a disability card that would allow Patrick to wait for rides without standing in lines. When they asked why and I explained that he was celebrating his transplant anniversary and is immune suppressed, they handed us all I’m Celebrating badges. Patrick insisted we wear them right away.

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Disney Cast Members are trained to watch for badges and offer congratulations. However, I’ll admit that few expected our answer of celebrating a year since transplant. It started to feel a bit strange to keep explaining, so we snuck the badges off when we went back to our room and didn’t pull them back out till we were celebrating birthday.

We decided to head straight for the ride that Patrick loved best last trip. Radiator Springs Racers. What we didn’t think about was that Patrick always has had a good chance to warm up on calmer rides before this fast ride with big ups and downs. He was terrified. But insisted we go again and, well, after the second go broke down crying during the ride. He’s a thrill seeker, but this year Patrick also finally had a sense of fear and we had to be a little bit more careful what he rode on.

We abandoned that plan. And switched to kiddie rides in Bug’s Land. Patrick was much happier there. In fact, he had an awesome time there!

After an afternoon break and nap in our room, we got dressed in our Halloween costumes and headed back to Mickey’s Halloween Party.  Patrick had asked to dress as mechanics, so I’d put together some family costumes of Mater’s Pit Crew. We headed to Cars Land to take a couple of pictures and the costumes attracted extra attention from cast members who offered pictures and even some fast passes and we ended up there longer than planned.

Unfortunately, as we arrived at the gates to Disneyland Park, we realized that we had forgotten to pack Patrick’s evening meds. Howie bravely headed back alone to get them while Patrick and I headed in to find something to ride. With crowds as they were, we were just getting onto the first ride when Brian caught up with us.

We rode a couple other rides in the dark. Then decided to give trick or treating a go. We’d planned to skip it, but when we discovered that there were lower sugar nut free treats available in each cart, and when Patrick was having a great time with it, we hit a few more trick or treat lines. We caught the electric parade and then watched the halloween fireworks before heading back to our room.

Friday

Friday was incredibly busy in the park. That meant fighting crowds in a lot of places and we didn’t ride as much as usual. We did the obligatory multiple rides in Autopia, met a couple of super heroes, and then decided to let Patrick try a couple of grown up rides as he was seeming braver. The was the first time we’ve tried Matterhorn. Unlike other rides, the Matterhorn bobsleds don’t allow for sitting side by side. The meant Patrick couldn’t bury himself into daddy’s side.  I guess he found it fun, but scary. The ride stopped and I turned to see if he was ok (remembering tears the day before). Patrick was lying down in the bottom of the sled.. laughing. I guess it was scary until he got where he couldn’t see.

Big Thunder Mountain Railroad was open for the first time in the years we’ve taken Patrick. He was nervous on this one, but actually really enjoyed it. He asked to ride it again, but with crowds as they were, we ended up grabbing lunch and then heading back to our room to rest.

By the time we came back, it was night and the idea of a roller coaster in the dark was scary. Instead, we headed off to Dumbo and he was much happier.

That night, we decided to watch Fantasmic. We opted to request a seat in the handicapped section so that Patrick could stay in his stroller. That always end up a bit awkward. Patrick is so much younger than everyone else there. But he quickly made friends with a grandma who was sitting there alone while her family was seated somewhere else. Her birthday was on Halloween too, so they had an instant bond.

We tried to stay put after the show for fireworks. Alas, though, Patrick was doing an awesome job in underwear for this whole trip. (He had a couple of accidents on rides, but mostly was good about asking for and making it to the bathroom.)  And halfway through fireworks realized he needed to find a restroom. Oh well.

Saturday

Thank goodness Halloween meant some limitations on entrance and crowds went back down in the park. It was so strange to be there knowing it was Halloween for everyone. Lots and lots of people in costumes. But we’d had our Halloween and were purely doing birthday.

We did some back to back rides of the kiddie roller coaster in Toon Town because there crowds hadn’t found the back of the park yet. At Minnie’s house, the cast member made a big deal of Patrick being there on his actual birthday.

In fact, Patrick absolutely delighted in wearing his birthday badge and having EVERYONE wish him a happy birthday everywhere he went.

After getting our morning fill of rides, we hopped onto the monorail and rode to Downtown Disney. There’s a fairly authentic Italian style pizzeria restaurant there called Napoli. Patrick DEVOURED the pizza there.

Seriously good pizza

Seriously good pizza

Then we went to get his present. A car from Ride Makerz. (This is the car lover’s version of Build a Bear. You design your car. It sounds like it’s starting out fairly inexpensively. But once you add remote control and a rechargeable battery and custom wheels and all.. well… We knew going in. Thank goodness Patrick’s fancy was fairly restrained. The experience was worth it. He loved getting to assemble the car with power tools. And he loves his truck.

We had reservations for dinner. Disney is always so good with dining. But we learned that we have entered a new realm for them. See, they are AMAZING at following allergy precautions. They won’t take a risk with any thing you declare to them. And they have lots of alternatives.

However, we knew going in that Patrick was going to was to order the mac and cheese. In fact, he’d been rather picky all trip and we were fairly sure that the mac and cheese was the only food he’d order on the menu.

So we asked the chef to come visit us at the table to make sure that the pasta and other ingredients they would be using were exactly what I expected and would be safe. Some pasta is made with eggs and unsafe. However, for Patrick pasta manufactured near eggs, as long as it isn’t concentrated eggs, is ok.

Well, before we knew it, we were being visited by the restaurant manager who explained to us that they would not be able to serve him any pasta. Or the cake that we’d special ordered for his birthday.

Only after I’d made a very in depth explanation of the parameters we’ve worked out with Patrick’s allergist would they allow us to order these foods for him.

So lesson learned. Disney is great at avoiding allergens. But don’t tell them your grey areas out loud. I think that’s going to be an ongoing rule as long as Patrick needs to eat food’s that he is mildly allergic to.

Anyway… once food was ordered the dinner was very nice. Patrick beamed at his little miniature cake and really, really loved the sorbet they brought him , too.

After dinner, we headed over the World of Color show. Our dining package reserved us seating in a specific area. And then, on top of that, Patrick had his handicapped pass. However, that really only led to a lot of confusion. It took a lot of walking to find the area we’d be seated in. And once we got there, we weren’t so sure it was where we wanted to be.

The reserved handicapped section was full. Beyond full. Like they had to make people get up and move to make room for us. And they just kept cramming people in.

Really, the problem came down to large family groups that didn’t understand that a family of 12 was too big to all squeeze in with one family member there. Alas, that meant that as we were rule abiding, our family ended up divided. They seated us on a bench so that we could fold up Patrick’s stroller and make room for others. And then they needed more space and Brian got up to allow it. Meanwhile the gigantic family grumbled about how unfair it was to ask them to be separated.

I think maybe next time we’ll have to look more closely at whether or not we can do regular seating. Thankfully, Brian stayed close enough that we could still see each other and the other people he ended up standing with (who were also displaced) were very kind. The show was really nice and Patrick really enjoyed it.

And we went to leave, but Patrick kept talking us into one more ride, and then another and then another and we ended up lingering and riding and then doing a little more shopping so that he ended up getting to stay up till midnight on his birthday.

Monday

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We came home Sunday and had a quiet day at home. And then Monday evening we invited grandparents to come join us for birthday cake. Mixed in with needing to run back and forth to help with Patrick’s school to help take him to the bathroom that made for quite the complicated day. Never decorated a cake in half hour increments with errands in between. But it came together and Patrick loved the little quiet family party at home.

And by the end of the weekend, I was quite satisfied and quite done with reminiscing about how far we’ve come. It is truly miraculous to see what this year has brought. And also, it is time to get back to normal.

That’s what we hope Patrick’s 7th year will be. Just a nice normal year where he can keep growing and we can settle into the normal that we’ve always dreamed for him.

First grade

 

Well, Patrick’s been in first grade for 3 weeks now. I love seeing him becoming comfortable at school. He loves his teacher. He has been matched with a very good aide. He’s making friends in his class. I think the work is just challenging enough. So far, things are going well.

It wasn’t our smoothest start. When the official first day of school in the district rolled around and Patrick didn’t go because they weren’t ready, I took it harder than I expected. Not only was I beyond tired at that point, but I felt a little left behind. We did our best to make sure that Patrick didn’t know the difference. And thank goodness his respite provider was trying to pick up extra hours before leaving for school because she came and kept him company that few extra days.

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Back to school shopping - breakfast date a Dunkin Donuts

Back to school shopping – breakfast date a Dunkin Donuts

I also decided that if you can’t be in school when everyone else is, you might as well take advantage of it. Patrick Make-a-Wish trip came with free passes to several amusement parks for a year from the date of his trip. Including one near home. So I hinted, maybe even begged, Brian to take the afternoon off of work and we went to play at Lagoon.

We did it kind of spontaneously so we surprised Patrick with it. I don’t think he knew that we had roller coasters close to home. He could have stayed all day. In fact, used to Disneyland 3-day-passes, he was a little confused when we left and didn’t come back the next day.

He was a little skittish after trying the regular “white” roller coaster.. a good old fashioned wooden rollercoaster. So kiddie-land was his cup of tea. Especially when he got to “drive a car” all by himself. I think he’d have stayed on that one ride all day. We stayed till we got tired and cold from being wet from the water rides.

 

And eventually, Monday morning did come and Patrick got to go back to school. I spent most of the first couple of days going back and forth training the school staff. They were very nervous about lunch and potty and g-tube medications and allergies. So I’d come back at lunch and for mini training sessions. And I think I eventually helped them see that what we were asking is new but not really hard. And, honestly, not really necessary most of the time.

I think Patrick’s doing pretty darn well at school. We all wondered how he’d take being away from home for 7 hours a day. That is probably the hardest thing. He comes home exhausted every day. He had been used to a mandatory afternoon rest time and he’s not getting that right now.

He’s also starving when he gets home to me. I think he’s doing pretty well eating away from me for the first time. But sometimes the temptation of friends and recess is great and he hurries through lunch. Thankfully, his education plan includes snack times and a water bottle at his desk and he’s doing ok with those things. But I’m not surprised that he’s lost a little bit of weight since school started and I’m not certain that we’re going to make the goal of 100% oral eating this month. (It’s hard when we are 95% there!)

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On Patrick’s 3rd day of school, some kids dropped a box labeled “bomb” on the front porch. The school put the kids in lockdown and the school was swarmed with emergency vehicles. Everyone was ok. I watched from across the street at my grandpa’s.

But we’re starting to get a routine regardless. Patrick’s school starts late so there is time for me to make sure he gets a good breakfast at home before we leave. If we’re really on point, we even get to the school with a little time for him to play on the playground. Then we visit the potty and then take Patrick to computer lab. Because of the breakfast in the classroom program, I drop Patrick off there so he misses that extra allergy risk.

After school, Patrick expects me to be waiting with a piece of string cheese. We are finding that letting him have a single small portion of dairy once a day seems to be the right balance and he’s in love with string cheese. Then we drive home and he gets to snack and play and rest however he chooses. Lately, his preference is to play in the yard with his ride-on car and bike and hope that the little boy across the street will come join him. But some days he’s tired and so we snuggle up on the beanbag in the basement and watch TV.

After dinner, we buckle down and do his homework. We’re trying to figure out the right balance between making him practice writing and making sure he doesn’t get frustrated. Dyspraxia, or motor impairment from Patrick’s brain injury, makes writing frustrating sometimes. Especially when he’s tired. But with a mix of stamps and tracing we usually make it through.

So far, he’s putting up with math better than I’m used to. They’re working on writing numbers and counting right now. Basically, he’s working in the math book he started but didn’t get a chance to finish last year. This is good. I’m wishing I’d realized I had access to that when we were in Nebraska because it gives a better foundation.. But at least he’s getting it now.

They’ve put Patrick the medium level reading group at school. He’s still got some to make up from kindergarten there, too. But he has a real knack for it. He is reading me little sight word/rebus readers every night right now without any hesitation. And he aced his last spelling test.

One day Patrick asked me if he could draw logos. I said sure, thinking it was fun to pretend. So he drew me the Jeep logo.

One day Patrick asked me if he could draw logos. I said sure, thinking it was fun to pretend. So he drew me the Jeep logo.

The biggest struggle right now is the potty at school. Because Patrick knows how to push through being uncomfortable, he seems to be having little problem with the idea of holding it for the entire school day. At first, he was just making it till his aide left at 2. But I put him leakier pull-ups. One accident and he started waiting for me to come at 3:30.

I started praying for a solution and the Lord sent a very interesting solution. A stomach bug.

We went to Denver for Brian’s nephew’s baptism. And on the 2nd night there, Patrick woke up at 1:30 a.m. and asked me to take him to the potty. Note: Patrick has historically had pretty big anxiety about unfamiliar potties. So that really surprised me.

The next day, that kind of became the story of the day. Trips to the potty. Lots and lots of trips to the potty. My knees were sore from all the trips up and down stairs and kneeling on the floor.

We were pretty worried about this. Diarrhea is a REALLY bad thing for intestinal transplant patients. It can mean rapid dehydration. It can mean developmental setbacks. And it can be a sign of rejection.

We should have been comforted that Patrick ran no fevers. At first we were. I was pretty certain that his upset stomach was a side effect of my letting him try both whipped cream and sour cream in the same day. But to the transplant team, no fevers made the odds of rejection higher. His symptoms lasted almost a week before improving and we had lots of conversations with his wonderful GI here as well as the transplant team in Nebraska. Thankfully, his labwork stayed stable. And I’m pretty proud of our ability to keep up with hydration using pedialyte through his g-tube.

Then, a few days in, I came down with the bug too. Who knew I’d ever be grateful for catching illnesses from my son. But it tells us when something is contagious and not malignant. And so far, I think it means that he gets to miss the opportunity of a sedated biopsy.

Patrick missed a couple of days of school because of being sick. But at least for me, he started using the potty there. And if he at least will go when I drop him off and pick him up, that’s one hour less of him just trying not to go. He’s gone for other teachers, too. Just not his aide.

He doesn't get much rest, but when he does, he crashes these days.

He doesn’t get much rest, but when he does, he crashes these days.

As for me… well, I don’t think I have the hang of things personally yet. I’m struggling to figure out how to work in appointments with school. Patrick’s had two half-days missed to go to appointments and subsequent make-up work. Plus make-up work for sick days. I’m grateful that his teacher sends the work home so that he doesn’t fall behind. But he’s not so much of a fan of the extra homework.

I’m not sure quite what to do with myself during the day, either. The first couple of days. I did nothing. Binged on Netflix. Ate foods that I wouldn’t make with Patrick home. (That first lunch that I didn’t have to consider Patrick’s food was a strange feeling.)

Did I mention we bought our hockey season tickets this month? We moved our seats to the nosebleeds for Patrick.

Did I mention we bought our hockey season tickets this month? We moved our seats to the nosebleeds for Patrick.

I’m doing some better quality scripture study for the first time in a while. I’ve even got a study notebook that I’m writing in. I’ll admit, though that I tried going back to traditional paper scriptures and I’m too hooked on the features of electronic study on my phone or tablet. It’s too nice to follow a footnote with a link or search a thought on the internet and find more information on it. Plus, I’m building a pretty nice little electronic annotation library of my own. (Seriously, look into the LDS Gospel Library App sometime. It’s got so much more in it than just fitting the whole Bible, Book of Mormon, and sunday school and institute manuals in your pocket.)

Some days I’m diligent and work on cleaning. I still feel wholly in over my head there. We have deep cleaning projects left from the summer before transplant. But I’m doing my best to chip away at it.  I’m doing much better keeping up on the regular cleaning and the yard work. I’ve cleaned out a few cupboards. Cataloged surplus medical supplies to donate. Canned tomatoes. Practiced the piano. Gone for walks. Finished a book. Filed medical bills and spent a lot of time on the phone making sure the last of what’s left from this spring is squared away.

A lot of my days have still been devoted to taking care of Patrick so I haven’t really scratched the surface of what I dreamed of doing with this time.

But today – well, today I decided it was time to update the blog. I’ve put it off too long. And when I get behind, it’s always harder to write. Because I know the post will end up long like this.

I dream of a schedule where I have blogging day and laundry day and volunteer at the school day and regular exercise and study and visits with family. Maybe someday.

Lots of appointments and planning a new normal

School starts on August 19th. My goal in this month prior to school is to help Patrick work up to a school year normal.

Therapy

That means a few things. First, it means restarting outpatient therapy. I took Patrick back to his occupational therapist a month ago. She was so excited to have him back and eager to start working with him on writing and an learning to manage his sensory processing disorder with a new “sensory diet.” (Since transplant, Patrick’s not nearly as controlled by his sensory seeking behaviors. But that doesn’t mean they’ve gone away. However, he’s a lot more tired so the big physical play that used to help focus wears him out fast now.)

The bad news, though, is that Primary Children’s lost a couple of therapists this summer. They have hired a bunch of new ones. But that means that the veterans are very busy with the transition. Patrick’s beloved therapist just doesn’t have time in her schedule to do the weekly therapist that Patrick seems to need right now. However, she’s been shadowed by another therapist in the couple of visits we went to. And so we transferred care, at least temporarily, to a new occupational therapist.

We also agreed to move back to the Taylorsville Clinic. (I have had some bad experiences with the office staff at that clinic and had decided not to keep going there.) Because it shares space with an instacare, Patrick has to wear a mask on the way in and can’t wait in the waiting room. However, it’s closer to home, has a bigger, cleaner gym.  And we were able to basically pick our time on their lightest day.

Our first session went pretty well. His therapist picked up on all the tools we use to keep Patrick on track: a clear schedule, verbal cues, deep breathing, etc. and I think he was calmer for her than has been his usual. The other nice thing is that I think we can pull off going to therapy at 8 a.m. on Mondays to let him get ready for the week at school.

I’ve scheduled evaluations so he can restart speech and physical therapies, too. And he’ll have his last home health feeding therapy session this week.

Evaluation

Also, to get ready for school, we started a new neuropsychological evaluation. Patrick was SO young last time he was tested. And we know that having a healthy gut has changed a lot of things for him. His sensory processing, focus, and other quirkiness is actually a lot less since transplant, even though he’s having a hard time with sitting still, speaking quietly, and controlling his temper. It seemed like a good time to get a new look at his abilities.

So we did an intake interview and in the first few weeks of school, Patrick will be pulled out for 3 half days so I can take him for some testing. Hopefully it helps.

As I mentioned before, we’re working on a behavior plan, too, with his psychologist.. hoping to have him used to a specific set of consequences and rewards that they can use in class. He always does best in class away from me, anyway.

Transplant follow-up appointment & diet changes

We saw Patrick’s GI, Dr. J this week. It was a long appointment. For one thing, I needed Dr. J to sign all new orders for school again. It’s getting smaller each time, though. This time around was only 8 signatures and 6 pages. Compared to 20 the first year, that’s big improvement.

Patrick weighed in at 24 kilos. That’s just under 53 pounds, and up 3 pounds in the past 3 weeks. They had a new dietitian this time and she pointed out that since Patrick’s eating meats (even if they are just hot dogs, hamburgers and lunch meat) he might be eating enough protein to not need as much formula at night. Dr. J was really concerned about Patrick’s 96% BMI and rapid weight gain. He said we need to get Patrick on a regular meal and snack schedule. And he said we should consider doing less “feeding while he is unconscious.”

So, I ran this all past the dietitian in Nebraska. And she made another reduction in Patrick’s formula feeding. I’m supposed to be keeping a log of everything he eats for the next 3 days so she can evaluate what he’s getting and we can start talking about a plan for all oral eating.

I’m not sure if this means needing to add other foods to his diet. Patrick doesn’t really absorb vegetables well. (Dr. J. says they are “just wood” anyway if you don’t have a colon to break them down in.) He can’t eat fruits. So he’ll need vitamin supplements at least.

Allergies

We also saw Patrick’s allergist, Dr. G, today. For years, every time we went to the allergist, he’d say that we’d need to do a whole new workup after transplant when Patrick was ready to eat. Well, Patrick seems to be more than willing to eat. And so it’s important to figure out what exactly he is allergic to. This is kind of tricky with immune suppression because the same drugs that suppress Patrick’s immune system also suppress his allergic reactions. This is good news. But it means that we don’t really know what the potential for allergies is.

So that was today’s goal. Figure out what Patrick might be allergic to. Allergist appointments are always long. Like, crazy long. We were there three and a half hours today. For an hour, we updated Patrick’s medical chart and gave history to a resident. (Which, in summer especially, is a bit like training a new resident.) And then Patrick’s allergist came in and went over possible allergens. I went through a list of things we could test for an highlighted the things I think Patrick might be allergic to. Then the doctor highlighted the things he thought from past test results Patrick might be allergic to. Plus other foods that he thought it would be good for Patrick to try to eat. We tested for just under 40 possible allergens in all. That was all that would fit on his back.

Some of the results were predictable. Cashews and pistachios, off the chart. Eggs still in a big danger zone. Oats were much higher than expected. And I highlighted peaches, oranges, and strawberries because I’ve had my suspicions. They were very surprised when some of those rare things came up positive. We had other positives for foods that rarely to never cause reactions, like tomatoes and wheat. These could be just because they are a big part of Patrick’s diet and not that he can’t safely eat them. Really, all testing done so far, we don’t know almost as much as we did going it.

Nuts, both tree nuts and peanuts, are still a HUGE no for Patrick. We are still a nut-free house, for sure. So are eggs, peaches, corn, oats. However, he tested negative for cow’s milk, which was a very big surprise. (You can outgrow milk allergies but a year ago, Patrick wasn’t anywhere close to that.)

So the next step is to do a blood test. That will test for a different type of reaction. If the negatives in the scratch test match up with negatives in the blood test, we’ll do a food challenge. (For example, offer Patrick cheese.) If positives match up with positives, then we’ll talk about a strategy to keep Patrick safe but eating as much as possible. They will not be likely to stop him from eating foods that he is currently eating without reactions. He might have become desensitized and we wouldn’t want to reverse that by taking something back out of his diet. But time and testing and trial and error will decide. And if the results conflict, meaning if one is positive and one negative, we’ll probably test again.

This is sounding confusing as I’m writing it. It doesn’t change much of what we have been doing. Just helps us try to figure out how to help Patrick eat as much as possible and keep him safe. Meanwhile, we refilled his epi and got correct dosing on his antihistimines and requested a new letter for school. And we got things started.

Patrick was a champion. It was a long appointment and he was very scared. And yet, he was very patient and helpful. He crashed in exhaustion on the way home.

Choosing a school

Enough medical updates though. I have other news. We also have been planning for school by talking to the school district. I had a meeting yesterday with a couple of district representatives (I was being transitioned from one representative to another because of some restructuring). The goal of the meeting was to finally pick a school placement for Patrick. And I did finally make a decision.

Everyone who has spent time working with Patrick: his home hospital teacher, his summer school teacher, his psychologist and group therapy leader.. they all say that he needs to be in a higher functioning self-contained classroom this year. In a regular class, he’d walk all over the teacher and never get anything done. In a low functioning class, he’d gravitate to the classroom staff and not make friends or learn to work independently. And in either, he’d get bored and then get naughty.

But, as I’ve written before, I was uncomfortable with the classroom that he’d go to by default because of our address. Well, a little over a week ago I got brave enough to ask if there were any other classrooms like that one in other schools. Since, after all, I drive Patrick to school anyway.

It turns out, there are several. And the closest to my home happens to be in the town where I grew up. Across the street from my grandpa’s house. And 5 minutes away from Patrick’s therapy office.

All of a sudden, things seemed to fall into place. The class is indoors. It has fewer students. The teacher has a pretty good reputation. And, even though it’s far from home, that family connection will make it feel like Patrick isn’t going to school far away. It isn’t farther from the other school. And it’s in a place I know. I know the neighborhood. If he made friends and wanted to play after school, I could do that. Grandparents, aunts and uncles all live nearby to help respond when he’s sick. Patrick could even, in theory, choose to walk to his grandpa’s instead of me picking him up. Eventually. Once we’re sure he will actually go there when given a chance.

The district folks seemed to think they’d even be open and excited to have me volunteer in the school. (They have a high hispanic population. It sounds like I can use my talents to help.)

I’m a nervous wreck still. All of a sudden being away from Patrick from 9 to 3:45 every day after all this time together sounds terrifying. I wonder if he’ll make friends. I worry because I don’t know ANY of the staff here. Losing my district rep means that EVERYONE will be brand new to me. And I don’t know what writing an IEP and trying to request accommodations is going to be like. And I’m coming in with a very long wish list that I expect them to take care of.

Also, unlike some other places I’ve looked at… this is a very normal school. No big special needs programs. Just two small little special needs units.

And – I still have to make plans for safe lunch AND breakfast in the classroom. Though with only a handful of students, that should be more doable.

To make things worse, I didn’t bother looking up a school calendar until last week. Our district starts the same week of the year every year and I made plans for that. Only THIS YEAR they decided to change things and start a week early. Which means that instead of having a full week to make plans with a new school like I thought, I’ll have just 2 days. 2 days! To give medical training. To make an allergy plan. To make a behavior plan. To orient a whole new team to our family.

I am overwhelmed and scared. A LOT.

We are going to register tomorrow regardless.

Transplant Day 176 and Please Stop Chasing My Rainbows

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Two weeks ago, my youngest brother got married. Brian and Patrick didn’t stay long, partly to protect Patrick’s immune system and partly because Patrick gets horribly bored at long wedding receptions. But I stayed behind at the reception. It was wonderful to catch up with family and friends that I only see when big events bring us together.

It was also a little strange to discover that so many of you read my blog, even though we haven’t talked in ages.

And there was something said to me by one of the women I’ve known and respected forever that’s been sitting a little funny with me that I’d like to address. She said how glad she was that we were home, especially as my blog had made it sound like we were living in “less desirable” circumstances.

This struck me funny because, although I really struggled with the loss of comforts of home at the Ronald McDonald House and the awkwardness of living in close quarters with other families day in and day out.. my memories of the Ronald McDonald House are overall very fond memories and I’m afraid I didn’t do the place and the people justice in what I wrote.

Patrick and Ronald last December

Patrick and Ronald last December

This week, a video was shared on Facebook of one of the families that we got to know while we were there who hold a very special place in my heart. They were there seeking the same miracle central line placement Patrick had needed to be listed for transplant and that mom and I bonded in a way few can over shared trauma. I don’t think to can understand how terrifying and desperate that end-of-the-road, hail mary, do or (literally) die situation really is. The video talked about how wonderful her son was doing and about how the Ronald McDonald House had helped her family. I thought it was good news and I wanted to rejoice.

The next day I learned that the video had, in fact, been shared in tribute. Instead of good news, the worst had happened. Lost central line access had put her son at the top of the transplant list. In the short time since we’d left the house, he’d received “the” call and gone for transplant. But something went wrong in surgery and he never woke up. He passed away this week.

We made a very calculated choice to stay at the Ronald McDonald House. Yes, there were financial benefits and proximity benefits. Yes, there were difficulties and uncomfortable parts, too. But we knew that being there meant the ability to share our journey with other people who’d get it.

I can’t describe the connection we have to the other families who lived long-term with us in that house. I learned how to be a transplant mom from them. We helped each other in every way we could. Cooking together. Doing each other’s laundry. Crying together. Celebrating together. They are part of my heart and having them now spread across the country facing these trials without being close to lean on each other for daily support is hard.

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The truth is that doing this at home would have been much MUCH harder. During all those months away, the people who loved us back home would often say, “We wish you were here at home so we could take care of you.” It happened so often that I almost expected to have to set up a visitation schedule to slow the flow of friends and family through our front door.

But the reality is that coming home has been very lonely. Because we can’t go out, we probably see less of the people we love here at home than we ever did before. I don’t want to sound ungrateful. A lot of you have caught us in the halls at church to express your love and many of you have offered help in the way of meals or help cleaning. But it is easy to forget that left at home is a very social 6 year old. I often feel like Brian and I are his only friends. And finding the balance between taking care of my own responsibilities and making sure he has time every day where he is shown how very loved and important he is has proven to be a challenge.

Besides that, it is hard to imagine the kind of life we live unless you experience it. Everything we do has to take into consideration how and by whom Patrick will be taken care of. We don’t just go to work or to dinner or to church. We can’t just call up a friend and say “let’s get together.” We skip most extracurricular events. We don’t get to be apart for school. And when Brian travels this summer, I will be the only wife staying home.

When we DO catch you in the halls or on the street somewhere, we are having a conversation that we know is going to be very brief and so we know there is a choice between trying to take time to answer questions about Patrick and sharing our lives honestly and sincerely wanting to spend time hearing about and catching up with YOU. We don’t want every adult conversation we have to be consumed with medical updates, and so we may skim or skip over details. One friend accused me of trying to hide how I’m really struggling. I’m not trying to hide anything. I just don’t want to waste our conversation.

You won’t read as often about the things that made me cry on this blog right now. We have a different set of frustrations here at home. I don’t want to put in print the experiences where someone I love might have innocently hurt my feelings. I know that hurt feelings have much more blame in the person feeling them. I’ve learned over the years that people are trying to say things that are supportive and helpful and if I look between the lines I see and hear and feel love.

Because soil contains bacteria, gardening requires mask, gloves, and overclothes. Patrick still thinks it is worth it to help.

Because soil contains bacteria, gardening requires mask, gloves, and overclothes. Patrick still thinks it is worth it to help.

But there is one thing I have encountered a few times that I’d like to talk about because it is hurting and I don’t think you know.

I’d like to ask you to stop trying to find my silver linings and rainbows.

There was a marvelous sermon given in LDS General Conference a year ago. If you’re facing hard times, and let’s face it, who isn’t?, I highly recommend that you read this talk in its entirely. You’ll find it here. In it, President Dieter F. Uctdorf said:

We sometimes think that being grateful is what we do after our problems are solved, but how terribly shortsighted that is. How much of life do we miss by waiting to see the rainbow before thanking God that there is rain?

It took me a lot of years of hard trials to learn that happiness is not something that comes to us after trials have passed. Happiness comes from learning to be grateful for our blessings right now. It comes from learning to see God’s hand in our lives. Right. Now.

That doesn’t mean that if you are struggling, if you are mourning, if you are going through hard times right now that you are ungrateful, unfaithful, or unhappy.

It has been a hard couple of weeks. We took a gamble and took Patrick out a little more than usual two weeks ago and he got sick. Being sick made him frustrated and moody. It meant even more limitations for him, which made him angry. We had a week of daily appointments.. appointments we shouldn’t miss and so we gloved and masked and we still went, which only made him feel worse. In the times inbetween, Patrick expressed his anger by acting out against the only people he had to vent to, his parents. Steroid fueled kindergarten anger is hard to deal with. Add to that the sleepiness caused by antihistimines and the insomnia caused by prograf and a stuffy nose? And monitoring his oxygen saturation periodically while he slept to be sure he was still doing ok. And, well.. you can imagine.

Thankfully, his prograf levels were accidentally low when he got sick and he was able to fight off the illness without needing medical intervention. But just as he got better, Brian caught the cold. He was down for the weekend, and then I got sick, too. Remember, we all spent the winter in fairly sterile settings and so none of us has immunity against this year’s viruses. Well, on the heels of a stressful week with Patrick, my body was fairly weak. I have spent the last few days fairly sick.

And it has rained most of the week. So we have been stuck inside more than usual. And, as Patrick has felt better, his body’s sensory system has been craving movement, so this was not a good week for that.

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If you asked me this week how Patrick is doing, I probably would have told you about those things. Because that is what has happened this week and it helps me to talk about my struggles.

That’s the rain in our lives right now. And friends are there to talk about the rainy times, too, right?

However, right now when someone asks me how Patrick is and I mention that we’ve been stir crazy, missing school, easily sick, wondering why we are struggling to hard to set up playdates, lonely, etc., I can almost predict the response. The person I’m talking to will ask me how much longer things will be this way. They’ll point out that Patrick’s almost 6 months post transplant and wonder when his medications will change and his medical team will allow him back in public. They’ll try to show me the end in sight.

I know you mean this well. You don’t like to see us struggling and you hope that relief is coming soon. You want to point out that there’s a rainbow just around the corner or a silver lining in the clouds.

But right now, that isn’t what I need. I need someone to walk with me in the rain. I need you to help remember how much I love my raincoat and umbrella. I need us to look together at how rain makes the earth clean and helps the flowers grow.

In other words, I need you to listen to me about my struggles and maybe try to help me figure out how to get through what needs done this day and this week. And maybe to listen about the good things too.

Because a lot of good things happened in the past 2 weeks. We got set up with Primary Children’s liver transplant team so that now, we have a transplant coordinator who checks Patrick’s labwork and calls me to see how he’s doing and I don’t have to bug his very devoted doctor with every little question and play intermediary with the transplant team in Nebraska.

We also saw Patrick’s rehabilitationist and neurologist this week. They both assured me that, while Patrick’s cerebral palsy and other symptoms of his brain injury aren’t gone, it hasn’t been made worse by all he’s gone through lately. He doesn’t want to wear a brace right now and getting to physical therapy would be difficult. And they both assured me that, given all we have gone through recently, it’s ok for that to be on the back burner right now. They’ll keep watching for trouble. Someday we’ll get back to working on strengthening and stretching and improving his gait so he can run and climb. But for now, I shouldn’t feel guilty for not doing more about it.

Also this week, Patrick and I went to a teacher supply store and bought some math manipulatives. We managed to hold 1-2 hour study sessions every day without major tantrums. Patrick counted and added the new pattern blocks without getting upset with himself or me. And his teacher was really impressed when she came by the progress Patrick has made in reading, writing, and math.

I taught Patrick to ride his scooter. We laid in the grass and watched the clouds.

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But I might not get to telling you about those good things that happened right now if you ask me about Patrick’s current struggles, and I answer honestly, and then we spend our brief conversation time talking about what things might be like when the rain stops. I promise, I may be wet and soggy and tired.. but I don’t so much mind the rain. And let’s face it, we’ve got a pretty rainy forecast ahead of us.

Our trials don’t mean that we need all of our responsibilities taken away. Yes, it may take more coordination for me to participate now than it was before I was a mother. But it is also healing to do normal things. I got to go to a youth activity and teach teenagers how to do data entry on vital records used for geneology this week. I had to get a babysitter, make special arrangements for dinner, and work around Patrick’s school schedule. But it felt good to be out among people and sharing my talents. It is nice to be included. I’d like to see you. I might have to suggest a less crowded venue for an outing or we might have our conversation interrupted two dozen times by my 6 year old. My life is messy right now. But I’d like to share it with my friends.

You might even learn something I haven’t posted in this blog. There is a lot I don’t write about.

Good things are on the horizon. Patrick’s 6 months transplant anniversary is coming up this week. A lot of things will hopefully change for the good. We are talking about when and how to go back to school and church. We also know that it isn’t going to be easy for Patrick, who has always struggled with routine and crowds and sitting still, to come back to them after such a long break. So we’ll need to take it slow and it might not seem to go well for a while.

I know that chronic disability is hard to wrap your mind around. Everyone likes happy endings. We like resolution. We pray for and believe in miracles. We don’t like people we love to struggle with hard things for years and decades and lifetimes. And I know that when you think of transplant you think of it as healing, a cure, and end to struggling. And so watching this be a long recovery and lifelong challenge goes against all of that. God promised joy in this life. But He didn’t promise us a life free of sorrow. Quite the opposite, in fact. He promised to refine us, and refining takes fire.

But I promise, it’s ok. We are ok with it. We can be happy in the rain.  But rain is best when you’ve got someone to splash in the puddles and share an umbrella with us. I promise, I’ll listen about your storms, too.

I told my friend that there were hard things at the Ronald McDonald House that I sometimes miss it. I miss being surrounded by people who were all facing the same struggles and so able to mourn together. I miss those friends who made the best of hard times with me.

But I think I miss it most because I didn’t feel like I needed to sugar-coat my trials. Because often it isn’t until I say things out loud and see the look of pity on someone’s face that I even realize that it might be pitiable.

President Uchtdorf again:

We can choose to be grateful, no matter what.

This type of gratitude transcends whatever is happening around us. It surpasses disappointment, discouragement, and despair. It blooms just as beautifully in the icy landscape of winter as it does in the pleasant warmth of summer.

When we are grateful to God in our circumstances, we can experience gentle peace in the midst of tribulation. In grief, we can still lift up our hearts in praise. In pain, we can glory in Christ’s Atonement. In the cold of bitter sorrow, we can experience the closeness and warmth of heaven’s embrace.

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My friend who lost her son this week is raising funds to help cover his funeral expenses. His fundraising page can be found at: http://www.youcaring.com/memorial-fundraiser/jalen-boyce-s-medical-memorial-fund/342215#.VTg_itc1flc.facebook