Patrick Hoopes

When we left our story, our hero Patrick was recovering from a successful line placement surgery and the disorienting effects of anesthesia. (Poor kid could barely walk.) His daddy took the role of protector, as Patrick had no balance and no impulse control and could not be left alone. His mommy made a mad scramble to pack his many suitcases for a much-needed and definitely hard-earned vacation.

Brian is not the easiest person to buy presents for. His computer geek taste is both technically complex and often expensive. And it’s rare that he doesn’t already have most anything he needs. I have a gift for screwing up gifts to him, too, by either telling him what he’s getting or inadvertently buying the wrong things. At Christmas, I was somewhat stumped until my mind landed on one idea that he really wanted and never would dream that he could have…. a trip to Denver to visit his brother and attend a Colorado Avalanche hockey game.

The last time we were in Denver, we were newlyweds. We were scheduled to go for Thanksgiving 2 years ago but, well, ended up flying Patrick home from Michigan that day instead.

So – when Patrick’s line was obviously not working, I got in touch with his GI and explained that we had tickets purchased for a quick family vacation. His response was “Well, then let’s get that line fixed tomorrow so you can still go.” And that’s how we ended up packing for vacation and recovering from surgery the same day.

Thankfully, Brian had booked an afternoon flight. That gave us the morning to get things ready while still taking care of Patrick’s needs. He was still feeling a bit impulsive and when I asked him if he wanted to go bye-bye on a plane, he ended up standing at the door throwing a tantrum, crying “bye-bye pay” over and over again. Yup, still tired and grumpy, too.

But he was a great sport in the airport. Things were quiet there and we breezed through security. (As much as you can do with patdowns and bag searches that come from traveling with IV’s.) We got to the gate early and I let him wander a bit to try to get him tired enough to rest during the flight. He loved wandering the terminal watching planes and trucks out the window and visiting with anyone who’d make eye contact with him.

We arrived in Denver in the early afternoon. I’m sure we were quite the sight with our 4 suitcases, 2 computer bags, diaper bag, stroller, TPN backpack and Patrick making our way to the rental car. The funny thing about travelling as a family this way is that no one expects us to know what we’re doing. Security is always surprised to find that we are so savvy about the procedure and rules. And you should have seen the look on the rental car agent’s face when we asked to be dropped at the Club member’s stop. But I digress.

We made it to Brian’s brother John’s house on time for dinner. Patrick was thrilled that the owner at Qdoba was willing to throw in a free tortilla just for him. We ate, and then we sat around and watched Short Circuit and caught up a bit. John bounced Patrick head first on the footrest of the recliner, and Patrick was in heaven.

The next morning, Patrick was wide awake at 6:30 a.m, despite having been up till nearly 10 p.m. the night before and despite the fact that he was still white as a ghost. Thankfully, though, after breakfast he was ready to sleep again. We had a luxurious nap that day! We slept well into the afternoon! All the work to get to Denver was worth it just for that nap.

We did eventually get up and got to John’s house with just a little time before his daughters got home from school. They are 8 and 10. We thought a cooking lesson might be fun so we took them to the grocery store and got all of the ingredients for our very fancy nachos. Then we came back and taught them all about cutting peppers and tomatoes. The end result was quite yummy.

John’s oldest daughter provided that evening’s entertainment. She was doing a dance in her school’s talent show. So we all piled into the van and headed to the show. As we pulled away from the curb, John’s youngest announced: “I can’t find my tooth!” I guess she’s knocked a loose tooth on the seatbelt on the way into the car and it had come out. We never did find it. Good thing the tooth fairy doesn’t charge a recovery fee.

The talent show was a packed house. My goodness was this a production! But I found myself really enjoying myself as I watched a bunch of elementary school kids singing and dancing to a bunch of Taylor Swift songs (among others). John’s daughter was number 18 of 36 some odd performances. She came on an hour and a half into the show, did a great job, and then we bailed. Patrick was doing his best to be brave and cheer along, but even he could only take so much.

Brian went out with John that night to meet some of his friends. (His brother is a very talented computer security expert and the computer geek crowd often only emerges at night.. Fear of sunlight perhaps? Oh wait, that’s vampires.)

But, the next day, Patrick was up again at 6:30. No early nap was offered, though. We had bigger plans. John’s family came down to go swimming in the hotel pool.

Now, technically you shouldn’t swim with a central line… or 3 days after surgery, for that matter. But we didn’t want Patrick to be completely left out. So, we did what any good parent would do. We covered all his gauze dressings with tegaderm, put an aquaguard on top of that, wrapped him in Glad Press n Seal wrap, and took him to the pool.

We did enforce two rules. His tubes and bag needed to stay out of the water, and he wasn’t allowed to be submerged above his belly button.

At first, he pretty uncertain about what we were doing. After all, I don’t even fill baths deeper than his belly… And he’s only been in a swimming pool once before in his life. But, quickly he warmed up to it.

I taught him that he could lean back and kick his feet and the water would splash.. And he was sold! That was about the most fun we could possibly have offered. And then, we showed him that we could go under the water for a few seconds and then pop up,and he was laughing so hard he could barely control himself. He learned the word “again” asking for us to repeat this trick. We swam till his little lips turned blue and his shirt was soaked from splashing.

We’d planned our swimming adventure knowing that Patrick’s surgical dressings needed to be changed for a regular central line dressing. So, after we dried off quickly, we got out the supplies and made John’s family assist with the dressing change. (Their job was mostly just to entertain Patrick.)

Then, I discovered a pinhole sized leak in Patrick’s curly tubing. This is a disposable piece and I had a spare, so I just changed out the tube, but we spent the rest of the day watching for signs of infection or problems, just in case some pool water had made it into his line. No worries, though. He was ok.

That night was the long-awaited hockey game. I said my goodbyes early because we’d decided not to try to take Patrick to the game. He struggles in our small arena with the noise and the game didn’t even start till 8.

Brian tells me that the Avs were creamed this game. Still, he enjoyed the game. A good dose of NHL for my die-hard hockey fan.

Meanwhile, Patrick and I stayed behind and did laundry and packed… well, that’s what I did at least. Patrick ran around the room undoing my work and signing and saying “Play, play, play” whenever I asked him if he wanted to go to bed.

And then, too quickly, it was time to go home. Sunday morning, we finished packing up the room. We had some time to spare, so we drove down to the Denver temple, then went back to the airport.

We were pretty nervous about going through security at an unknown airport, but our organization paid off and it was one of our smoothest screenings yet. The wait for the flight was easier this time – there were moving walkways in the terminal that Patrick ran on for the entire wait. Then, once on the plane, Patrick fell asleep at takeoff and slept till right before we landed.

A lot of people would think we’re nuts for taking off on vacation in spite of all we went through at the start of last week. But, as I’ve said before, Patrick has taught us the importance of making the best out of every opportunity. It can sometimes take more work and it often doesn’t go as planned, but when all is said and done, it is well worth all the work we put into making these memories as a family. And I can’t think of a better way to have caught up on our rest.

Brian and I were talking about the week’s events and he said to me “This is going to make one heck of a blog post.”

Well, yes, it will, so I decided I’d better take this moment of quiet to write about the first and more medical part of the week.

Rewind to last Saturday night, a week ago. Patrick’s bacterial overgrowth or whatever it was was acting up again. Just before dinner, he made that “I feel sick face” and I barely got a tube on to drain his stomach on time.

At bedtime, as I gave his medications, he made the same face but as it’d only been a couple hours, I put him to bed anyway. I put his tummy to downdrain an hour after he falls asleep anyway. Surely he could last that long. Big mistake. He woke up just as I was heading into his room throwing up.

So, I rushed in and got him out of bed. He was really, really shaken up by this rude interruption to his sleep. Just sobbing. I sat on the floor and tried to comfort him and clean him up while Brian remade the bed. Meanwhile, I drained his stomach the rest of the way. Once all was clean, he went right back to sleep.

But it was to be short-lived. A few hours later, he was up again. I went in and did my best to get him to sleep, but he was really unhappy with the idea. I noticed his pajamas seemed a bit damp, so I changed his diaper and PJ’s yet again. I tried to rock him to sleep for another hour, but he just wasn’t going to have it.  At last, I just gave up in frustration, put him in his crib and went back to bed. Another mistake.

It sounded like he eventually fell asleep, so I did, too. But an hour later, he was awake again, this time pretty sad and sleepy. So, I went in and rocked him to sleep, then snuggled down in the recliner in his room with him so we’d all get more sleep.

At 6 a.m., I finally snuck him back to bed and found I was quite wet. But, all I could see with the light of my flashlight was more clear wet, so I decided it was another leaky diaper and left him.

At 8, he woke again. This time I found him in his bed tearing his central line dressing into tiny little pieces. A quick glance revealed that last week’s repair had blown during the night. The puddle and the night’s events all pointed to one conclusion – the line had been broken for hours. It hadn’t bled a drop.

This is good, as Patrick could easily have bled to death. But it also was worrisome, as it meant that there were clots in the line.

So, I woke Brian and we made a mad rush to pack and get into the hospital to try to repair the line.  We arrived around 9 and the IV team came quickly to do the repair. However, with the line clotted, it wasn’t possible to test the line to see if the repair was done right. We just had to act on faith. They told the nurse it was done, and she came in to say they were ready to send us home.

Now, normally I love to be in and out of the hospital as quickly as possible. But at this point, Patrick had been without TPN for as much as possibly 9 hours. And we were going home with a fully clotted line. I explained that I’d like to stay where they could place an IV in his hand or arm to give fluids if they needed too, but they were determined that we should go. The hospital is overflowing right now with cold, flu and RSV cases. They didn’t want us exposed and, honestly, they needed the space.

Finally the doctor came to talk to us and I couldn’t help keep the tears from flowing. I’m brave in a lot of ways, much braver than most parents and it means we get away with doing a lot of things at home for Patrick. But after having him stop breathing and his heart stop beating in my arms and having the doctors say it was caused by low blood sugar, among other things, I really get scared when Patrick’s TPN is taken away for any length of time… especially when I am asked to do it at home.

Finally, though, Brian and the doctors convinced me that it would be safest to get away from all the respiratory bugs in the hospital and go home. They ordered TPA, a declotting agent, for us to use on the line at home and sent us on our way.

I was feeling awfully alone that morning as we left the hospital. Especially as this was one more week of missing church and family dinner. Thankfully, the mom of one of Patrick’s music group friends happened to be arriving at the hospital as we left and she gave me a hug and a good pep talk.

We got home and Patrick tried to nap. But he didn’t feel well enough, so I wrapped him in a quilt and cuddled with him in the big comfy chair in our living room. We watched 3 hours of Bob the Builder while he sucked on a candy cane to help keep his blood sugar up. (Glucose can be absorbed in the mouth. This is the only time Patrick is ever allowed candy.) He was exhausted and would doze off from time to time, but never with the candy cane far away.

Finally, 2 p.m. came and the glue in the repair had set enough to start trying to declot the line. The first lumen was easy. Brian just drew the clot out into a syringe and we were able to start giving TPN through that line.

The 2nd lumen, though, was stubborn. We put all 4 doses of TPA into it. (Usual protocol is 2 doses, then call the hospital.) We pushed and pulled and finally got a little blood to draw, but it wouldn’t flush. Finally, we left TPA in it for a whole night, but in the morning, it didn’t work.

So, Monday morning I called the nurse in the GI clinic. At 11 a.m. they called and said to come into the hospital so they could help to work on unclotting the line. So, back we went.

We got there just after noon and saw the doctors right away. They decided we’d given TPA a fair chance, so next they decided to try hydrochloric acid. This can eat through mineral deposits from the TPN. It took nearly 3 hours, though, before the overworked pharmacy got this prepared. Patrick and I napped while we waited. Then, went for a walk in the hospital while the 30 minute soak was in.

We ran into another Short Gut family who was there for a line infection. Patrick and their litttle short gut boy got to play together in the playroom.

Then we went back to draw the hydrochloric acid back out, but there was no change. Next, they tried sodium bicarbonate. Same routine. Long wait, then we wandered through the hospital while we waited. Brian got off work and came up for dinner.

But, in the end, no change.

At this point, we knew the line would have to be removed. You can’t leave a clot in your body, even if it is inside a catheter. The doctor gave us 2 choices: go home and try to get added onto the outpatient surgery schedule, or stay the night and try to force surgery to make him an inpatient add-on.

We opted to go home. We needed sleep. And, we have a good enough relationship with Patrick’s doctors that we knew they’d do all they could for him.

So, Tuesday morning I woke up with that same sinking feeling in my stomach knowing that the line would have to be taken out and not knowing what putting a new line in would require. I didn’t even know if it’d be done that day or the next week.

But at least I had a good distraction. For valentine’s day, Brian bought me 3 hours of professional housecleaning. The cleaning service arrived at 9 and did a great job making our bedrooms, bathrooms and living room look spic and span. They did a lot of what I never hav time to do… scrubbed tubs, mopped floors, dusted, etc. While they worked, I made calls to the Dr. Jackson to start working on a plan.

Then, Patrick and I snuck away to IHOP for National Pancake Day. They give you a free short stack of pancakes in exchange for a donation to the children’s hospital. We thought this a fair trade. My mom and sisters came too and we had a great lunch. They had a pirate there making balloon animals. Patrick came away with a sword and pirate hat, quite happy.

At last, Dr. Jackson called back. I explained the problem. Of course, this all happened the week we had planned a family vacation. And so, Dr. Jackson pulled strings so the line could be repaired with time for us to still go. So, I got word at 1 on Tuesday that Patrick would go into surgery the next morning.

Patrick had an appointment with his physical therapist Tuesday afternoon. And his new brace was supposed to have arrived, so I didn’t want to miss it. So, I forwarded the phones to my cell phone and away we went. (Hooray for Ooma VOIP service).

The brace was a perfect fit… even fit inside his current shoe so I didn’t have to go shopping for new shoes again. We tested it out and worked for half an hour, then my phone rang.

Patrick’s wonderful PT Holly kept working with him while I gave surgery Patrick’s history… always a TREMENDOUSLY BIG feat. You should see the notes they take. Half an hour later, I got off the phone just as the therapy session ended.

My phone kept ringing all afternoon as I got instructions and made plans for the next day.

We checked into surgery Wednesday morning at the bright and early hour of 6:45 a.m. Patrick loved playing with all the toys in the waiting room, and I marvelled that he was finally big enough for those toys.

We got him into his surgical gown and then a nurse practitioner came to take his history. She was obviously nervous about the complexity of it all. But she was still very kind about it. And Patrick loved her bedside manner. He even opened his mouth, stuck out his tongue, and said “Aah” for her.

Then, we wandered down to ultrasound. Since Patrick’s had so many lines, not all of his veins are good to run them through anymore. So, they look in ultrasound to see what his veins now look like and where IV’s can go.

Patrick hates having ultrasounds done of his juglar veins. It took Brian holding his bottom half and one hand and me leaned over the top of the bed holding his head and the other hand while trying to entertain him with the Elias Tours app (animated car and truck flashcards). And even then, the images were only borderline good.

When that was done, we checked into surgery to find they were behind schedule. By this point, all the hanging upside down after 3 days of limited sleep was getting to me. So, we wandered down the cafeteria to get breakfast (and ibuprofen.) Just as we finished, they paged us on the overhead. Surgery wanted us back, as they were not as behind as they thought they were.

We met with the anethesiologist and the surgeon, Dr. Rollins (a.k.a. “Ca-ca Ro-ro” in Patrick’s language.) Dr. Rollins is Patrick’s surgeon so he talked to us about his overall health, fishing to see if he should be offering surgical help for Patrick’s motility problems. It’s so nice to have doctors who really care like that.

Then, we gave Patrick some Versed and he got all giggly and kissy and limp. Then, we put him in a wagon, kissed him goodbye, and they wheeled him off to surgery.

The procedure went quickly and well. Because we’d unclotted the larger lumen, Dr. Rollins was able to actually run a wire through the line. He removed the line with the wire in place, then use the wire to guide a new line back into the same vein. This buys us a little more time in that same place with the central line… a miraculous thing for a boy who is running low on places to put IV’s.

They called me back to recovery quickly. There, Patrick was just waking up and in pain. They gave him some pain medicine and the nurse asked if it would help for me to hold him. We just needed to wait for an x-ray and a blood sugar test before she could send him to recovery.

But, when we moved him to pick him up, I noticed that he was bleeding more than he should be. Patrick tends to bleed a lot from the sites where lines have been tunneled.

So another nurse came and held pressure to stop the bleeding. Meanwhile, x-ray came. Finally, we got a blood sugar, too, but it was low.. So we got permission to restart the TPN.

It was odd to be a part of all of this action. Some PACU nurses don’t like parents hovering. However, the doctors had told the nurse that I really knew my stuff and, as Patrick’s complex, it would be best to call me back and to listen to me. So, I found myself kind of calling the shots.

By the time we finally got everything settled to go to recovery, Patrick had been awake long enough to be discharged. Brian came back and we let Patrick drink some water to be sure he wasn’t naseous. He still was. So we let him rest a bit.

But, as he rested, he managed to loosen his dressing just enough to have to change it.

And so, following doctor’s orders, the nurse said “Ok, you can do it.” She helped gather supplies and then left us to change the dressing on this brand new line and surgical site. Quite the feat to do, especially to do and control bleeding. But, we succeeded and I dare say did a pretty good job.

We made it home that afternoon. Patrick was really groggy, loud, energetic, and wobbly. He couldn’t walk, thanks to the anesthesia, though he sure kept trying.

Still, we had a working line, and by morning he was doing better… Which is good, as we had bigger, funner adventures ahead. We had the go ahead to go on vacation. And we’d even managed to pack our bags, in spite of it all.

To be continued…..

Patrick’s gut has been sick this past week. A couple of days ago, he woke up from his nap throwing up. It’s probably bacterial overgrowth again, when the bacterial flora in his gut gets out of balance because, well, how could it not?

 

So I decided today that I’d add his third and optional oral antibiotic to his regimen to see if it helps. But that meant a trip up to the pharmacy at Primary Children’s. And the 30 minute trip across the city and up the hill is hardly worth it for the time it takes to run in and pick up a prescription.

Enter the zoo pass.

We bought the pass just for occasions like this.. so not every trip “up the hill” would be purely medical. So I hopped on the zoo’s website when Patrick got up from his nap to check the hours.

Gate closes at 4 p.m. Grounds open till 5:30. It was quarter to 3. So, in true seize the day fashion, I packed up and got out the door at 3.

I almost thought we wouldn’t make it. There was some state high school competition at the university and traffic was heavier than usual, but we made it to the zoo gates at 3:50 p.m. One helpful woman yelled after me “They’re closing” as I rushed to the gate.. But I’d read the fine print.

I made it just on time to get in before the gate closed and all the people who hadn’t read the last line headed out at 4 because that’s when they thought the zoo closed.

I’m sure the overall attendance at the zoo was low today anyway. After all, yesterday was free zoo day and there was snow in the forecast. Still…

For one magical hour, Patrick and I were the only visitors in the zoo.

What a unique and fun experience. First, we walked in and were greeted by a curious peacock. Then, we were surrounded by a flock of turkeys. (You see these animals uncaged other times, but they always stay behind fences at a safe distance.)

In the ape house, Patrick was wandering around looking in windows when all of a sudden I looked up to see that he and I were face to face with a HUGE gorilla. Then, one window down, the youngest orangutan, Acara, came over to the window to play with us for nearly 15 minutes. She and Patrick exchanged kisses through the glass. She pouted when I decided that we really ought to go.

Patrick’s favorite place in the zoo is the small animal house. In the center is an open rainforest looking area full of birds and turtles. We walked in and I spotted a parrot perched just a few inches a way. I pointed it out, telling him it was a bird “like Max”.. well, from then on, Patrick would only visit the animals in the corridors for a few minutes at a time, then run back to this room in the center yelling “Ma! Ma! Ma!” and whistled. Being alone in the small animal house was a certain treat.

The tigers put on a bit of a show for us, too.. One jumped down from a hill about 10 feet above us, then walked right up to the window and gave a friendly roar. The leopard just kept pacing, but would stop to see if we were still there. The lemer yelled for attention every time we turned our backs, and then when we’d look would put on a show, including jumping right down to the glass. I don’t know if he was performing or trying to chase us away. And the chickens, well, they ignored us as they foraged through the flowerbed, but clucked enough to convince Patrick that I wasn’t just making up the animal we’ve been looking at in books.

Sometimes I really love the adventures our family has because Patrick has taught us not to miss an opportunity. And, really, it pays to read the fine print.

For Valentine’s Day this year, Brian and I went to pianist Paul Cardall‘s 2nd Celebrate Life Concert. If you are new to this blog, Paul Cardall is a heart transplant recipient and family friend. He was born with a congenital heart defect that nearly claimed his life the year we met him. Like Patrick, he spent much of his early years in and out of hospitals. He and his family have been mentors, cheerleader, and friends for us since they first heard we were bringing Patrick home.

In September 2009, after a very long wait, Paul finally received his transplant. And the following Valentine’s Day, he started a tradition.. a benefit concert raising money and awareness of congenital heart disease.

While Paul was recovering from his transplant, Patrick was recovering from his ostomy takedown, a long difficult recovery on the heels of our most difficult months with him. As the two experiences are interwoven in our memories, it’s difficult to not feel an emotional investment in Paul’s life as well.

And so I found myself feeling a bit like a proud mother hen watching in awe as Paul performed music from his new album.  I was awed to see how much more energy he had, despite being sick with a bad cold. And I was thrilled to see how his face has rounded out and his voice has gained more strength.

And as I watched, I couldn’t help but think how I dream someday for Patrick to have that kind of joy and freedom. That is what we are working for, praying for, saving for, losing sleep over.

This picture, one of my favorites, kind of captures it all.

This is Paul at the top of Mount Olympus, the highest point in the mountains surrounding the Salt Lake Valley. Strong enough to complete the climb. Friends, family, and a loving wife at his side. Celebrating life. (and remembering a few other things.)

If I could wish anything for my son, it would be this kind of freedom.

Lately, I feel as though sometimes Patrick and I live in the land of “no”.

A lot of that is because Patrick is a typical two-year-old right now, exploring his world and testing his limits. So we have the normal no’s. “No, don’t pick things out of the garbage to put in your mouth,” “No, don’t throw things at the other people in church,” and “No, don’t turn that cup upside down.”

But there are other no’s, too. There are safety no’s like “don’t pull your line”, “don’t scratch your dressings,” “don’t play with epi pens,” and “don’t put sterile things in your mouth.” And there are practical no’s like “chew your food before you swallow it,” and “I know that tastes good, but stop eating now, or it will make you sick.”

And then there’s my least favorite kind of no‘s. The ones where I have to try to push Patrick’s limits to help him overcome developmental delays. Patrick’s speech therapist and I had a good talk about this kind of no this week when she tried to tell me I was being “too nice” when Patrick started avoiding the task she had given him. Patrick gets really frustrated with fine motor tasks like puzzles and will throw the pieces to avoid doing them. Or, his desire to chew will become so overwhelming, given that he’s not allowed to satisfy it with eating, that he won’t be able to resist putting a toy in his mouth. Or he’ll be asking me for something with a word that I understand but no other human on earth would guess the meaning of. Or he’ll fall and want me to give him my hand to help him get up, instead guiding him to get up on his own.

In all of these situations, it is my job to say “no” to the limiting behavior and to try, instead, to teach Patrick the wonderful things that he can do if he’ll just stretch his limits a little farther. And to Patrick it often seems that I am a very mean mommy who really likes to say “no”. (This is even harder when someone who doesn’t know is looking on and tells me it’s just his age and he’ll outgrow it and I should just let things be for now instead of being so strict.)

Can you see, a bit, why the image in my mind of Patrick standing totally free and happy and healthy at the top of a mountain… why that choked me up a little bit during the concert?

Patrick’s therapist reminded me that I’m not really just saying “no,” even though it may feel that way sometimes. (Except, I confess, sometimes, I get a little tired and grumpy and really am just saying “no.” I’m working hard to stop doing that.)

Really, although right now our little world has more no’s in it than most, the message isn’t really what can’t be done. Really all of this, every moment of it, is working towards helping Patrick to do all that he can. I’m trying to learn to use different and more positive words to match the message. And I’m working on making our actions match, too.

And so, that’s why this week when the weather was beautiful and warm for a couple of days, Patrick and I took his wagon to the school during his short little break from TPN. I wrapped his belly in ace bandages so the tubes couldn’t get caught and he climbed all over the playground equipment and went down the slides backwards and forwards and pushed his wagon across the schoolyard as fast as he could run until he couldn’t run any further and I had to put him in it the wagon and pull him back home. And that’s why the next day, even though the wind was so strong it almost blew him over, we stopped at another park just because we had the time and the park looked tube friendly and he could go anywhere he dreamed and I could keep up behind him with the backpack on. (We can be quite a sight sometimes, tied together as I try to do what a 2-year-old wants to do.) And that’s why, when I took him with me to a Relief Society activity at the church, I spent most of the time we were there following him as he discovered running in the gym and sliding on the floor and pushing the button to make the drinking fountain go, instead of making cake pops and handmade cards and visiting with the other women that were there, like I’d planned to do.

Why? So that Patrick gets to do all that he possibly can do and can escape as often as possible from the land of no.

So someday he can conquer his own mountains.

 

If you’d like to know more about Paul’s story, check out his blog at beforemyheartstops.blogspot.com

It could be said that today was not my best day. It started out seemingly ok. Despite the fact that I’d been up several times during the night (once on purpose to switch bags of fluids for Patrick and a couple of other times because of very strange dreams), the day started out quite promising. Patrick woke up very happy. He managed to throw all of the toys out of his crib, unzip his backpack and get out both epi pens, and open the med port on his g-tube letting his stomach drain all over his bed – and all with a smile and before I got myself up and into his room.

Still, he was thrilled that the mess and the fact that he was wide awake meant that he got to go straight to the bath.

We were supposed to have our back door installed today. This “supposed to be” has been happening for weeks now and I thought for sure we’d made it today as the contractor called to confirm before I even had Patrick dry and dressed. Within the hour, though, he called back and cancelled for health problems. And I was ok with it – something I was quite proud of.

I woke up feeling pretty sure I was getting sick. So, with my day newly opened up, I decided to go see a doctor and get some antibiotics before the weekend so I wouldn’t be down sick trying to get into urgent care on the one Saturday that Brian was scheduled to work. Especially since Brian is already sick.

I called and got the last available appointment of the day. Then I called my sister who was available and willing to help. She met me and came out to Patrick’s music group so that I could leave early if it went long.

Well, I knew things were off when we walked into music group because they room was arranged all wrong. The teacher was sick and there was a sub. Still, the kids came and we had fun singing and dancing, anyway, and it ended on time for me to drop Patrick at home and still make my appointment.

The appointment was quick and easy, too, and I thought to myself that I was quite on top of things.

Well, when you give a mouse a cookie…. Or when you give me a successful feeling morning with my family around, I might think it would be fun to go to lunch. My mom came and met us at the closest fast food place with a playground. We ordered lunch and Patrick ate marvelously well, and then got down SO excited to play on the AAAIIIII!! (This is his current word for slide). He even got brave enough to crawl into some of the tubey things, but not through them.

Finally, I said “Ok, just one more time down the slide.” He wanted to go on his belly like the other kids and I thought that if I helped him do it up on his knees a bit, it wouldn’t hurt any of his tubes.

But, alas, before he got to the slide, the clave of his loose lumen (that’s medical talk for the the blue thing on the end of one of this tubes) got stuck in a hole in the playground floor and before I could stop his forward momentum, the line snapped in half.

I kept my cool though and, even with a playland full of watching parents, calmly got his dressing loose enough to clamp off his tubes without even getting any blood on his shirt.

As I went to leave for the hospital, my mom said “Well, you might as well at least let him go down the slide that one time.” Which got me thinking, “Well, why not just let him keep playing?” So, with the help of Grandma and Aunt Marcy, I left Patrick to play tube free while I ran the 5 minutes home to grab TPN, a few supplies, and Patrick’s Woogie (a.k.a. iPod touch).

Along the way, I called ahead to the Rapid Treatment Unit where lines are repaired to let them know we were coming. They informed me that, thanks to RSV season, every bed was full and that we’d have to go to the E.R.

So, after picking Patrick up, I started making calls to see if i could find another option. I’m too experienced of a hospital mom and I know that this week is the beginning of the peak of RSV season and that a standard trip through the emergency department would mean a serious risk of Patrick getting sick.

I tried to call the GI clinic, but they weren’t picking up. So then I tried the hospital operator who was very direct in telling me that until 5 p.m., only the GI receptionist could connect me with the GI on call.

So, after several more attempts, I finally got through to Patrick’s GI’s nurse. I asked if they’d let us come in for a clinic visit with ANY doctor or nurse in the GI clinic and have the line repaired there. She made a couple calls, and came back to tell me that the appropriate way would have to be to go through the E.R.

This kind of hurt my feelings as I wasn’t trying to be inappropriate.. but I did my best to take some deep breaths and refocus myself as I arrived at the hospital. (Yes, I’m confess that I made all these calls while driving into the hospital.)

As expected, the E.R. parking lot was full. So was the entire first level of the parking garage. I got a space only by luck. And I thought, this could spell disaster.

Thankfully, my calls ahead had resulted in the E.R. having a plan and a room ready for us. They admitted us as an outpatient instead of an emergency visit.. a choice I’m thankful for as the difference is a $75 co-pay. And we got to skip triage. They showed us to a room in the far corner of the old section… nice and far away from the contagious patients. I breathed a sigh of relief.

IV team came it was two of my favorite nurses, which helps a lot. The repair went quickly. Patrick was a champion for a kid who only got a brief nap in the car. He even stayed relatively calm when they cleaned his skin with the nasty cloraprep that he is partially allergic and very sensitive to. (We’ve had to start allowing this, as the alcohol swabsticks in all of the dressing change kits in our network of hospitals have been recalled. Yes, I’m working on this problem so we don’t have to keep torturing this kid. But that’s a whole other post.) While they worked, Patrick and I played games on his iPod, sang songs and played peek-a-boo behind the sterile drape that they put over his face.

And then, the line was fixed. The doctor came in to look Patrick over briefly and, of course, to be intrigued and amazed by his history. Then he gave his official seal of approval and sent us on our way.

We left the hospital at 4:30, the beginning of rush hour. But still, made it home safe and sound.

Patrick was exhausted and definitely feeling the effects of his TPN being off. Finally I decided that he needed a nap, even though it was close to bedtime. So I rocked him and sang some songs and tucked him into his crib.

Then I cleaned up the living room and got dinner warming. (Thankfully, when Brian got home from work last night feeling super sick, all he wanted was Taco Bell, so I’d just put the dinner I’d made in the fridge for today.)

Then, I woke Patrick and gave him a cup with a big drink of formula in it. By then, he was surely feeling starved and thirsty.

He sat and drank a day and a half’s normal amount of formula while I got new TPN tubing primed and ready to go. I finished with half an hour left before the glue had set long enough for the repaired line to be safe to use.

Patrick wanted me to connect his TPN and cried when I told him he’d have to wait. That’s a first. It broke my heart.

Thankfully, Brian called to say he was getting away from work at last.. and that distracted Patrick a bit.

At 7:30 daddy got home just as we reached the magic hour where I could run the TPN again.

And then, with my best friend finally home, the tired and sick and lonely and overwhelmed feelings hit all at once and I couldn’t help but cry. I was just plain discouraged by how the day had gone. My best laid plans and oh so productive morning had just snowballed into one of the most difficult jobs of being Patrick’s mom: trying to keep him comfortable and calm when he has to be off his TPN.

I’m lucky to have a good husband who listened and didn’t criticize and didn’t complain about his twice-roasted pot roast cooked to Patrick’s dietary standards (meaning some of the best parts were left out with good intentions of adding them in at the end of cooking, but then abandoned when my day went bad.)

Patrick went willingly to bed by 8:30 and I’ve had a little time to rest now.

I did pretty well continuing to feel sorry for myself.

But then I got to thinking. How do I measure the success of this day? If you measure against my plans for this day, then I am a complete and total failure.

However, if you measure it for Patrick, this was an ok day. He woke up happy and had a great bath. He got to go to music group and a couple of his best friends were there. He got to skip his nap, be spoiled by his aunt, eat french fries and hamburger buns with Grandma and play on the AAAAIIIII!!!. He got to see his favorite IV team friend and give bones to a whole bunch of new people. He got to watch Mater on his iPod and play some of his favorite apps. When he started to not feel well, he got to cuddle with his mom and nap a while in her arms. Then, he got a veritable feast of neverending formula, made special for him roast potatoes, and to top it off, potato chips. (Yup. I gave him a bag of potato chips while I cleared the table after dinner.) He got to be hungry and eat foods he liked to try to satisfy his hunger – something he rarely experiences. And, to top it all off, when he started to feel better, it was on time for daddy to come home. Daddy played with him and even wore a priority mail envelope as a hat just to make Patrick happy. Then, mommy let his choose his pajamas. She let him wear his blue underpants on top of his diaper to bed, just cuz she was tired enough and he was dehydrated enough for it not to matter much. And, at the end of the day, he was safe at home snuggled in his own bed with his blanket and his monkey.

Did I do what I wanted today? No. Did I do everything in my power to make what could have been a bad day for Patrick an at least moderately good one? Absolutely.

Sometimes, that’s the very best I can do.

I’ve been a bit pensive this past couple of days.

Right after I wrote a post about routine, Patrick came down with a cold. You know, just a routine cold with runny nose and cough. Just like everyone else has right now.

Only I thought I was justified in being miserable about it. I even composed a wonderful tangent about how much more worry and grief and sorrow accompany a cold when it’s Patrick sick with it. (Which is, by the way, still true as any illness causes major gut complications.. but still, altogether, irrelevant.)

We took a couple of sick days where we did nothing but wipe noses and steam heads and read books and drain bellies and watch kid shows on netflix and treat diaper rash and play with toy cars and sleep and take Patrick’s temperature every hour or two and fret about whether or not we should tell someone medically trained that Patrick was sick.

His nose got better, but then the cold hit his gut and it started to be hard to sleep at night and yet, for all he was tired, Patrick didn’t want to nap during the day. On back to back days I spent HOURS trying to rock Patrick to sleep only to give up and let Brian do it instead.

Oh – and Brian had to work overtime because he’s transitioning into his new job.

And Patrick was so tired and grumpy that he didn’t want to do anything I said. I didn’t feel good and he just wanted to do what he wanted to do when he wanted to do it. I was convinced I was failing as a mother.

And I felt completely justified in being miserable.

And I wondered where my miracle was.

And then one of my very dear friends learned in an ultrasound that the baby she is expecting this summer has a birth defect that could be an isolated problem or could be a sign of a larger illness.

And then, another dear friend lost a second daughter to a cruel and unrelenting congenital illness.

I regained my perspective.

C.S. Lewis wrote:

“Little people like you and me, if our prayers are sometimes granted, beyond all hope and probability, had better not draw hasty conclusions to our own advantage. If we were stronger, we might be less tenderly treated. If we were braver we might be sent, with far less help, to defend far more desperate posts in the great battle.”

When you live a life filled with daily miracles, it is easy to take them for granted. It is easy to feel yourself forsaken when a loving Master doesn’t pave over every pothole in the road. Sometimes, when things are hard, despite prayers and hope and unwavering faith, it is because He knows we are stronger and braver than we think we are.

I have watched in wonder as my friend has humbly and trustingly returned another daughter to arms of her Heavenly Father. I am not yet that strong.

I have been very tenderly treated.

And, as I have watched these friends’ grace in loss, I am more thankful for the gift of a cheerful, lively, happy toddler. I am more determined to make each moment matter. I want to be more graceful and more gracious. I am seeking more Divine help.

So that I may, at least, live worthy of my post.

Today, I took Patrick to the dentist for the very first time. His pediatrician has been telling me for months that I need to and, well, routine dental care is actually a requirement for kids on a transplant list. But I’ve been nervous. Dental care is one of those things that can set bacteria loose in the bloodstream and I didn’t want to risk another infection with just a dental cleaning.

A few months ago, I resolved that I’d take Patrick to the dentist after I’d had a chance to pick the brains of the docs in Seattle about how to do it safely. Today was the day.

I did a TON of research in picking a dentist. I had a few requirements. 1)The dentist had to have experience with special needs kids. I know what it’s like to try to get treatment from a doctor who doesn’t know anything about TPN or central lines. I wasn’t going to risk that in a dentist. 2) He had to know how to handle Patrick’s sensory needs and do the work in a way that wouldn’t add to risks of oral aversion. 3) The dentist’s office had to be funner than Patrick’s average doctor’s office. After all, with all the hours he’s logged in boring hospital clinics, I figure he’s earned a really cool dentist.

Finally, after hours of searching online, I came across a blog about this great dentist in South Jordan. Little People’s Dental.

They met all my requirements. Dr. Stewart did his pediatric dental residency at Primary Children’s and still works there in addition to his regular practice. His website had various videos of him teaching about children’s dental care on a local TV show and he seemed to know his stuff. The mom writing the blog raved about how well he did handling the sensory needs of the little boy. The admission paperwork (which I downloaded from their website) even had an optional page where I could tell the dentist about Patrick’s communication and sensory needs. And the office? Well, it had both a playhouse AND a slide.

The appointment went really well. Patrick was in love with the magnet wall inside the playhouse, though he soon thought the magnets should stick to all the walls in the office. He ran along the stepping stones, climbed up and down the stairs, and slid down the slide which he called an “AAiii!” Oh, and of course he flirted with the friendly office staff

Finally, it was time for the appointment. They showed us to the room and immediately pulled out a puzzle for Patrick to play with. This is why I have only one good picture from the room. Patrick saw the cabinet where the toys were kept.. it even had a hole in it that he could look into to see the other toys.. and so his attention went there for most of the visit. Besides, we hardly waited in the room at all.

Dr. Stewart came in and while Patrick played with the dental assistant, the toys, and the nifty button that made the dentist’s chair go up and down, Dr. Stewart asked me questions about Patrick’s medical needs: his liver, his TPN, his diet.

Then, he gave me a crash course in children’s dental health. Here are a few things I learned.

1) The primary caregiver’s dental history can affect the child. This has nothing to do with genetics. I guess it’s the bacteria that live in your mouth. Therefore, because I have had few cavities in my life, meaning my bacteria is good, there is a greater chance that the bacteria in Patrick’s mouth will be good, too.

2) However, the screwed up bacterial balance in a child with short gut can offset this, so we’ll still treat Patrick as being high risk for tooth decay.

3) It’s a good idea to let kids go at least 2 hours between eating to discourage tooth decay. That means that, at most, his “small frequent meals” would be about 6 times a day. This doesn’t count g-tube feeding. Right now that’s easy, but after transplant when frequent small snacks are a must, I may need to adapt to protect Patrick’s teeth.

4) Teeth that touch and deep pits and grooves are places most likely to get cavities, so they are important places to clean.

5) Patrick’s adult teeth are forming now. Who knows how his health will affect their development, but if there are problems (say from his liver) there are options to correct them.

It made me smile as the dentist warned about the dangers of candy, carbohydrates, juice and pop. (All on Patrick’s forever forbidden list.. But the message of keeping teeth clean was heard.) And I was surprised that he didn’t give me a lecture about using a pacifier. In fact, he said that it looked like I was following the exact right schedule for slowly weaning him away from it. He looked at Patrick’s teeth and answered my questions about safe non-food chewable options to meet Patrick’s need to chew.

I knew from the website that the dental exam wouldn’t be done in the dentist’s chair. Instead, he had Patrick sit on my lap, then he put his knees up to mine and had Patrick lay his head back on his lap. I restrained and comforted Patrick while Dr. Stewart counted his teeth. (Just cutting his 2-year-old molars, and he’ll have all his baby teeth.) He scraped the plaque off and that’s when Patrick started to get nervous.

Flossing was new and that made Patrick cry, but it was done quickly and we got to move on to funner things like toothbrushing and putting on fluoride. Dr. Stewart showed me the right way to do these, including where to put my fingers to help keep his mouth open without getting bitten and told me that the more we brush and floss at home, the less scary the dentist’s office will be.

Because he throws up easily, Patrick has permission to start using fluoride toothpaste now to make his teeth strong.. He’ll swallow it, but as long as I don’t give more than the size of a piece of rice each day, that should be ok.

And then, we were done. They gave Patrick a stack of “prizes,” mostly coupons for goodies, some of which Patrick can have, and some not. And then he said to brush and floss the way he’d shown me… including having Patrick lay back in my lap.. and to come back in 6 months.

It was everything I could have hoped for in a dentist visit. I’m glad I did my research because I don’t think we could have hoped for a better first trip to the dentist.

If you’re looking for a pediatric dentist, especial one who can handle special needs, I’d highly recommend Dr. Stewart.

We were given some very valuable advice by one of Patrick’s doctors when we were getting ready to bring Patrick home from the NICU. He said that it would take several months for Patrick’s medical care to feel like routine.. but to remember that it would all become routine.

He was very right. For the first couple of months, things felt awkward and new, but slowly it became routine.

What I didn’t realize was that the same would happen each time something in Patrick’s medical status changed. Hospital stays, bacterial overgrowth, changes in schedule or therapists or doctors, even just childhood illnesses can throw the routine off and each time it seems to take a couple of weeks at least to get routine back again.

I was thrilled to realize this weekend that after a couple of months of ups and down with Patrick’s gut, with changes in antibiotics and the addition of erythromycin for motility… finally, we have routine back again.

Patrick wakes up between 7 and 8 every morning. I get him up and we read books before giving him his bath and getting him dressed. Then, I withdraw the ethanol from his line and connect an syringe of erythro on a small IV pump. This pump goes in a little bag that Patrick carries over his shoulder for half an hour while I finish getting dressed and ready for the day.

Then, we take off the erythro, hep lock his line, and go downstairs for breakfast.

With his stomach feeling better, Patrick has quite the morning appetite, drinking almost an ounce of formula every morning – more than he ever has wanted or been able to eat before. He’ll also munch on some bread or cereal while I draw up the rest of his medicines.

By 9:30 or 10, we’re all done with breakfast and ready to play. Some days we’ll do stretches and let him play without his brace, other days we put on his brace and go for a walk.

Naptime is sometime around noon, followed by a snack of potato chips and formula. He gets his TPN break for 2 hours. I spend part of that time getting the new TPN ready, with Patrick’s supervision, of course. Next comes playtime while his tummy drains – we play with puzzles or read books.

Next, we make dinner. Usually, this starts with a request for “la la”, meaning that Patrick wants me to put my iPod in the speaker dock and turn on one of Pandora’s kid radio stations so we can dance.

Brian gets home and we have dinner. I’ve recently started using my little food processor to try let Patrick try some of the foods that I cook. Usually just some ground up meat mixed in with his usual baby foods. They say that letting him try homecooked foods will help him get used to a variety of flavors because unlike store-bought foods that always taste the same, home cooking tastes a little bit different every time. He’s uncertain about whether or not he likes this yet, but so far his gut is doing ok with it. It allows me to control the ingredients more closely, which actually seems to be helping.

Then, after a little bit of time to wind down, we get ready for bed. Patrick wears several layers of diaper to try to keep him dry, despite all the extra fluids he gets at night. We also wrap his chest in coflex and pin his PJ’s closed to keep him from picking off his dressing. Getting ready for bed takes some extra effort, but Patrick knows the routine and is learning to help. He can even put his shirt on with minimal help.

If we’re lucky enough that daddy’s done with work, he’ll come join us while we get ready for bed. Once his PJ’s are on, Patrick gets to sit with daddy and play or read books while I draw up Patrick’s evening medications. We let him chose if he wants them in his g-tube (he’ll lift up his shirt to tell us) or in his mouth. (We’ve learned to flavor the meds so he doesn’t mind just swallowing them.)

Then, he gives us both kisses and we tuck him into bed.

A little while later, I sneak in to put his g-tube to downdrain and connect replacement fluids before going to bed.

Of course, our days are still full with doctor’s appointment and therapy and adventures like hockey games, church assignments, and fun family outings. But I’ve even learned to adapt the routine to fit the crazy business of most of our days.

Of note – at Patrick’s last physical therapy appointment we decided to cut back his visits with her to once a month, instead of twice. He’s at the stage where he just needs to practice walking… there isn’t really much extra guidance that she’d give during our visits, so we’ll use the time instead to practice walking in all the fun places I can come up with.

 

In fact, Patrick got a great new walking experience this weekend. Our church group had an outing just north of Utah Lake. They call it a turkey shoot. Those who enjoy it practice target shooting while those who don’t eat a nice lunch and just enjoy one another’s company. This year it was foggy and wet and cold. But for Patrick, that meant it was MUDDY. He loved walking in the mud, walking circles around a very patient Brian the whole time we were there.

 

 

 

Also, we saw Patrick’s GI last week. We didn’t really address much new. They are happy with the way he’s growing and how healthy he looks. We’ve decided that with the erythro, that Patrick’s output is about as good as we can hope for. Dr. Jackson said he wanted Patrick’s liver to be healthier, but there isn’t much more we can do to help that. They checked the levels of triglycerides (fats) in his blood today to decide if he can continue to rest from lipids, or if they’ll need to be given back.

The rest of the visit was, well, just a fun visit. We ran into a lot of hospital friends we haven’t seen in a while because Patrick hasn’t needed to be admitted. With him walking, I let him come into the appointment without a stroller, so he just wandered around making friends with the people we didn’t know and delighting those we did.

It’s nice to have some calmness and routine at home right now. Brian started his new job last week, but only a couple of days each week. The other days, he’s trying to tie up loose ends at his old jobs. This means a lot of extra hours and a very tired Brian.

I’m pretty tired, too. I work pretty from the time I get up until the time I go to bed. But at least we have some calm and routine again.. We’ve reached the point I call “the new normal.” I hope it’s a good long time before we have to start working on a new normal again.

We took Patrick to Seattle this week for his 6 month checkup with the transplant team at Seattle Children’s Hospital. It was a pretty eventful trip, in very good ways. Since writing about it could be a bit long, I thought it might help to break it up.

The Flight Out

Now that Patrick’s 2, he’s old enough to need his own seat on the plane. We weren’t sure how this would go, but it turned out to be a lifesaver. Our little boy is growing up!

Patrick was so excited when he looked out the window and saw an airport full of trucks and airplanes. He watched out the window all through takeoff. But then he got tired.

We made the decision to fly out the same day as the appointment. To get there on time, this made for a very early morning. Patrick got up 2 hours earlier than his usual, but didn’t want to sleep on the plane.

However, once we got him settled in his own seat with his sticker book on the tray table, all was well. He put stickers all over his seat, the tray table, the seat in front of him, as well as Brian and myself. He played iPod and colored in a coloring book – all big boy things. And the next thing we knew, we were in Seattle.

We drove into the city where we visited some of Brian’s co-workers at the radio station there. We had lunch with one of them, and then headed up to the hospital.

The appointment

We were actually a bit early to Patrick’s appointment. This was good because it meant that he had a little bit of time to let him run off some extra energy, since he’d barely napped at all. He walked around and around the waiting room talking to anyone who’d pay attention to him until he lost his balance and fell, right into a chair, giving himself a great big goose egg right above his eye.

Of course this is when the pager rang to say it was time for our appointment.

Thankfully it was a good enough distraction to settle him down. We went through the usual routine of getting him undressed to be weighed and measured. For the first time, he was big enough to stand on their scale to be weighed.

Then, the parade of appointments started. First, came the social worker. It’s been over a year since Patrick was listed, so she just needed to check in to make sure that nothing significant had changed since our intial visit.

Next came the dietician. We reviewed Patrick’s diet with her and she looked at his labwork. Again, she was just plain happy about what she heard and saw. She said that his willingness to eat will be a huge benefit to him after he has his transplant and encouraged us to keep giving him opportunities. We even talked about ways to use my little food processor to make him some new flavors of food.

Then, the GI Dr. Horslen, came in. Our visit with him was quick – he had an emergency patient to get to but wanted to talk to us. We talked about Patrick’s labs and his liver. He said that it looked like Dr. Jackson (and we) were doing a great job of managing Patrick’s care. I asked him about the high outputs we were seeing. His answer surprised me, because it was so simple.

He said that it was just evidence that Patrick’s intestine secretes fluid, but can’t reabsorb all of it. Then he said that it wasn’t a bad thing to be draining that fluid out of Patrick’s stomach. The alternatives of stooling it or throwing it up are certainly not merciful. With the erythromycin for motility, Patrick is still moving some through his colon and doing more doesn’t make sense.

And that was that. He said he didn’t think we needed to be seen for another 6 months so we made a new appointment and were on our way out.

We made it to the elevator just as one of the transplant specialists (the ones who take vitals and make appointments) caught us. She’d forgotten that there was one more person who wanted to talk to us before we left.

There was a doctor who’d come specifically to ask us if we’d be willing to enroll Patrick in a research study being done by the University of Washington. Basically, they’re doing a study to document developmental delays in patients with Short Gut Syndrome. The hypothesis isn’t that the syndrome directly causes delays, but that the multiple illnesses and hospital stays can lead to delays that are overlooked. She was quite surprised that we didn’t think that this was any new news. We’ve had Patrick enrolled in early intervention since he was an infant because one of the nurses in his first NICU told us to expect delays.

We thought that maybe Patrick’s complicated medical history or the fact that we lived in Utah might make the study impractical, but they seemed more than willing to accomodate these things. They actually seemed quite eager to have him as a part of the study. So, we agreed to give them one extra day with our next visit. Patrick will spend a few hours doing some developmental tests that, to him, will just seem like a very nice person playing games with him. We’ll get to do the hard work of providing all the extra information they need about his medical history. Hopefully it will help other kids.

Then, we got some of Seattle’s best doughnuts, and headed up north to the home of our friends who are so kind to host us whenever we are in town.

A trip to the city

Our first night was a little bit rough. Patrick was sleeping in a Pack n Play, which didn’t have room on the sides to let his g-tube hang through to drain. He woke up in the middle of the night throwing up and we had to scramble to get him taken care of with all our stuff packed in suitcases. But, we got him settled and managed to get some sleep. Patrick woke up happy enough at 7 a.m. and quietly played in bed with me while everyone else slept.

With our appointments out of the way, Friday we had time to play. I thought it might be fun to make another attempt at taking Patrick into the city. (Since our first attempt was derailed by a broken PICC line.)

So, once we got up and going, we packed up the kids (Lindy and her daughter Lauren agreed to show us around) and drove into Seattle.

First, we went up to Pike’s market. We got some Russian sandwich things that were very yummy, but whose names I can’t remember.

Perhaps I would have learned the name, but right after we ordered, I noticed Patrick looking pale and uncomfortable. He was doing his best not get sick again – to no avail. So, we made a hurried run to the lower level of the market and hooked up Patrick’s g-tube to drain. Then, with crisis averted, we ate.

We’d barely finished our food, though, when the fire alarm went off and we had to make another hurried exit. What are the odds?

Oh well, it got us to the aquarium all the quicker. Patrick had a really good time here. He liked watching the fish. His favorites seemed to be the jelly fish, though he kept blowing his nose at them, so I wonder if he thought they were really neat looking floating tissues. He didn’t like touching the sealife in the petting ponds (I forget what they really call them.)

Mostly, Patrick loved being free to walk around as he liked. And he loved that he got to do it with his daddy.

The picture above is evidence of this. Patrick wandered into a fairly forgotten little corner, but walked across a grate as he did so. I guess he liked the sound the grate made. And so, he decided to stand and dance on it. So, with Daddy holding one hand, he stood there and danced for a while.

Traffic

We left a bit later than we’d planned to and got stopped by a nice long train on our way out, but thought we’d get back home with plenty of time. When we got to the freeway, there were signs about there being a major accident, but not really being familiar with the area, we completely underestimated the warning.

Turns out there was a pedestrian accident on the freeway that closed all but one lane for several hours. We spent a couple of hours just creeping along. Thankfully, we were well packed when we left so I prepared and connected TPN in the car on the way. We ate all of the pringles I’d packed to tide us over and listened to Lindy sing the entire soundtrack of The Jungle Book.

We made it home just on time for dinner.

You’d think that would have deferred our plans – but when you have a child like Patrick you take every opportunity you’re given, so of course, after dinner, we still took the chance to go to a hockey game.

Hockey

If you don’t know it, my husband is a serious hockey fan. Being in Washington provides a rare opportunity. You are close enough to the Canadian border that people are very serious about their hockey. So, even though the Everett Silvertips are a junior league, their arena and fan base put us Utahns to shame. A rare opportunity.

One note, though, before you go to a hockey game in a city and league you don’t know, research the opposing team. We were greeted in the parking garage by the comment “price is double for Winterhawks”. This was the team Everett was playing. And we accidentally came dressed for the part. Our rental car had Oregon plates. (They were from Portland.)

Then imagine our surprise when Brian entered the arena to find that his Chicago Blackhawks sweater exactly matched the logo of the opposing team. I wasn’t much better, dressed in red, the same as them. Brian ended up taking off and hiding the sweater so we could cheer for the right team.

Also, if you don’t know, Patrick hates hockey. Not the game itself. Just the noise. Historically, he had never made it through a game without screaming, then sobbing, whenever the train whistle announcing a home team goal plays.

Well, I’d found some child size swim earplugs the week before that I brought along and they proved to be the solution we’ve been looking for for all this time. They were just small enough and just moldable enough to actually work in Patrick’s tiny ears. And without the noise, he really enjoyed the game.

At first, he just wanted to go to sleep. After all, this was day 2 of not enough sleep at night and shortened in-the-car naps during the day.

Then the zambonis came out. Being a form of “truck”, they make Patrick really happy. When we showed him the zamboni shirt we’d bought in the team store for him, he grabbed it and pulled it on his head (right over his sweater). And from then on, was as happy as could be.

He played with the people sitting around us. He danced to the music.

And then, much to our surprise, halfway through the third period, put his feet in Brian’s lap, snuggled into my chest, and fell asleep… through the rest of the period and into overtime.

Whidbey Island

A short ferry ride from Everett is an island called Whidbey Island. In the summer, it’s a popular tourist spot. We’re thinking of taking a vacation there with our next trip to Seattle.

So, Saturday we went to check it out. Patrick wasn’t impressed by the ferry, as we were once again stopped in an unmoving car. He didn’t get that we were on a boat. But the island itself was a hit.

We walked around a bit and window shopped. I finally got a sweater, which was good, as I was freezing. Then we had lunch. (The best clam chowder in the best bread bowl I’ve ever had.)

Then, the sun came out. So we couldn’t resist stopping in at Sweet Mona’s for some candy and gelato. We took them down to the beach.

Patrick was just coming off his TPN so we disconnected his tubes and let him run. This kid really loves the beach. First, he ran around in the grassy area above the beach.

But he just kept looking at the water.

So I took him down. At first, he couldn’t quite figure out how to walk on the sand. He clung to my hand and begged to walk in the water. (NOT in his DC shoes. Sorry kid.) Then he got brave and started walking up the beach on his own. We had a great time throwing seashells in the water and letting him stand on and jump off of rocks. (With help of course.)

We stayed much longer than we planned, then went home where we finally took a nap. I was exhausted, as the only way to keep Patrick from throwing up at night was to get up and drain his stomach by hand. He was exhausted from not enough naps.

In the end, we had a great trip, but were oh so glad to get home to Patrick’s bed and drainage bottle and a good night’s sleep with a more settled tummy.

I think that in June we’ll pack a swimsuit and crocs and let Patrick get wet.

In a recent discourse, President Dieter F. Uctdorf, a member of the First Presidency of the Church of Jesus Christ of Latter Day Saints, shared the following analogy.

“It’s remarkable how much we can learn about life by studying nature. For example, scientists can look at the rings of trees and make educated guesses about climate and growing conditions hundreds and even thousands of years ago. One of the things we learn from studying the growth of trees is that during seasons when conditions are ideal, trees grow at a normal rate. However, during seasons when growing conditions are not ideal, trees slow down their growth and devote their energy to the basic elements necessary for survival.

“At this point some of you may be thinking, ‘That’s all very fine and good, but what does it have to do with flying an airplane?’ Well, let me tell you.

“Have you ever been in an airplane and experienced turbulence? The most common cause of turbulence is a sudden change in air movement causing the aircraft to pitch, yaw, and roll. . .

“What do you suppose pilots do when they encounter turbulence? A student pilot may think that increasing speed is a good strategy because it will get them through the turbulence faster. But that may be the wrong thing to do. Professional pilots understand that there is an optimum turbulence penetration speed that will minimize the negative effects of turbulence. And most of the time that would mean to reduce your speed. The same principle applies also to speed bumps on a road.

“Therefore, it is good advice to slow down a little, steady the course, and focus on the essentials when experiencing adverse conditions.”

Now, mind you, we haven’t been exposed to any extremely adverse conditions, but after months of smooth flying, quick growing, and otherwise unexpected good health for Patrick, we’ve recently needed to slow down, and make some adjustments.

As I’ve mentioned before, for the past several months, Patrick’s stomach has been very upset. When we drain his stomach, we’ve been getting ever increasing amounts out. When we don’t drain his stomach, he throws up. At first we thought it was bacteria causing the problems and tried changing the oral antibiotics we gave him. We’d see short periods of improvement, but the problem always came back, and kept getting worse.

And then, right before Christmas, Patrick’s dietician called to tell me that his labs were showing signs of problems with his liver. This didn’t surprise us much. His eyes were looking yellow for the first time in a long time. But it wasn’t good news.

Then, if that wasn’t enough, Patrick got a cold. First he developed a fever in the middle of a horrific snowstorm. (Bad enough that, when the fever seemed to be going down, not up, we opted to wait out the storm rather than go up to the hospital. The fever went away by morning.) Then, as with any bug, his gut got worse. He started waking up sick during the night. And, because he was sick, we cancelled all our appointments and spent another week home, just the two of us for most of the day.

Meanwhile, Patrick’s labs were still showing elevated liver enzymes and bilirubin, meaning his liver was sick. His dietician and doctor decided to take the lipids (fats) out of Patrick’s TPN (IV feeding.) This is a pretty drastic step. The lipids are the part of the TPN that hurts the liver. Taking them away lets the liver rest and heal. However, it also takes away Patrick’s best source of calories – slowing down his growth. (That’s ok. He’s a bit of a chunk right now, anyway). It also can’t be done long term. Eventually, he’ll develop fatty acid deficiencies.

The good news is that, for now, his liver is responding to the treatment and his eyes are white again, scary lab numbers back down closer to normal.

Still, Patrick was draining over a liter of bile from his belly every day. If this is the result of an infection, that kind of long term illness could be hurting the liver. And whatever the cause, that represents a large amount of fluid and bile salts that the liver is putting out, but not receiving back from the colon. The liver likes that mission complete signal of getting its bile salts back again… so the incomplete process could be doing damage.

Finally, we had one sick night too many and I decided to call in help. So, just after the start of the New Year, I sent an e-mail to Patrick’s doctor.

Then – bored and stir crazy – Patrick discovered undressing himself. Yup. For a whole day, he tried taking off his clothes. By evening, when he could’t get his shirt off, he decided to take his dressings off instead. I was doing dishes and turned around just on time to see him snap his central line in half.

We ran up to the hospital and got the line repaired. It was quick, but we didn’t get home till 10. The glue had to set till 1:30 a.m., so I took a short nighttime nap, then got up to start the TPN.

But the line didn’t flush the way it should and by morning, the repair had sprung a leak.

So back to the hospital we went again. The repair proved difficult this time, taking over an hour of work and two repair kits to complete. (Amazingly, Patrick layed still, watching his favorite iphone app for all that time.)

By then, I was sick (I had the cold too) and exhausted from lack of sleep. So I decided that I wasn’t leaving the hospital till everything was taken care of. I went to the pharmacy and raised a stink about a prescription that I needed to fill but that was hung up by a change in our insurance that happened at the beginning of the new year.

Then I went upstairs and told Patrick’s GI nurse all of what was in the e-mail to his doctor and how worried I was about the high output, his liver, bacterial overgrowth, and all the rest.

Then I went home and got what sleep I could manage.

 

The next night Patrick’s doctor called me. He said that he thought that maybe Patrick’s stomach upset was being caused by poor motility, not bacteria. So we stopped playing with oral antibiotics. Instead, Patrick’s doctor restarted an IV antibiotic called erythromycin that helps to stimulate motility.

We now run this medicine by IV right before breakfast and right before dinner in the hopes that it will help the food get to where it needs to be. I worried because the IV tubing on the syringe pump we use for meds is so short. But Patrick doesn’t mind it. He actually quite likes carrying this pump around over his shoulder.

At first, Patrick’s motility really picked up. The results seemed immediate. Yes, I still get excited when my child poops, so lots of really full dirty diapers was good news for me.

But after Patrick threw up either at or right before dinner 3 days in a row, I realized that this was going to take some fine tuning.

Still, the medicine seems to be helping. Patrick’s total fluid losses are holding steady at just over a liter a day, but some of that is passing all the way through his gut – which means that he’s being given his best chance to absorb all he can.

So, we keep plugging away.. slow and steady. And overall, things seems to be better. Patrick’s appetite is improving. His liver is staying healthy. And output even seems to be starting to go down a bit.

We hope this is just a little bit of turbulence. We’ll keep working with Patrick’s doctors here and in Seattle. (It’s time for a checkup there anyway.) And we’ll keep hoping that this will be some momentary discomfort for him and not the beginnings of things going downhill the way that, by all rights, they should be doing. After all, he has less gut than any other child I have met EVER. That is bound to cause problems and get worse until something changes. Kids waiting for a transplant don’t usually get healthier with time.

So we’ll do what trees and pilots do and slow things down a bit, focus on the essentials. But we’ll do what little boys do, too: grow and play and learn new things.

One thing – between the holidays, family events, and illness – most of our friends and therapist haven’t seen much of us this month. And if you see Patrick right now, after about a month with little contact, you’ll be blown away by how much better he’s walking, how much more he’s talking.. and how cute he is with the new sign language that he’s picked up in the last few weeks.