Patrick Hoopes

A week ago, Early Intervention called to say that after months of waiting, they had an opening for Patrick in their structured play class.

And so, this Monday, as the other kids in our area went back to school, Patrick went to his first class by himself, too.

Structured play is like a preschool preparation class. The teachers work one on one during the class. They guide the kids through a variety of activities from playing on stairs and slides and trampolines to singing songs to snack time. There’s a board in the room with little pictures representing each activity. Every 6 minutes or so, they ring a bell and the kids switch activities.

For Patrick, the idea is to create an environment where he can learn how to follow instructions and participate in a class. It lets him make friends and learn in a safe environment.

As for me, well, because this is his first classroom experience and because IV’s are not standard equipment, I sit in the lobby outside the class and watch through a two-way mirror. I’m not required to be there, but everyone feels a little bit safer that way.

This is a really great way for me to see what preschool might be like for him, as we’ll soon start talking to the school district about whether or not Patrick should go to preschool when he turns 3.

And so far, other than the fact that it means moving naptime, Patrick is really loving his new class.

I’m an awfully proud momma sitting and watching him through the glass. I can’t believe how quickly he’s growing up!

Confession, faithful blog readers. I have been withholding information from you while waiting for the full story.

So here’s the news. Patrick’s doctors here and his doctors in Seattle conferenced a couple of weeks ago. When we saw Dr. Jackson last, he told us that they had agreed on recommending that we go forward with surgery for him. And so, we made an appointment with Patrick’s surgeon here and finally were able to see him Friday. That’s the final meeting we were waiting before before we brought the news to our faithful online following.

Patrick is scheduled for plication of his duodenum on September 12th.

This is the surgery I told you was proposed back when we met with the team in Seattle. They are going to go in an taper his small intestine to make it more narrow. They’ll run a row of staples down one side and then trim off that excess. The objective is to make a narrower duodenum that better fits the colon. If the fit is better, we hope that it will be able to contract (parastalse) better and bile can move through as stool instead of backing into his stomach to be drained.

It will be a long surgery, simply because Patrick’s insides are surely scarred and will take some effort to sort out.

I was pretty nervous coming home from the appointment with the surgeon. I absolutely love Dr. Rollins because he is so honest with us. He doesn’t take unnecessary risks and really cares about Patrick as a person, not just a patient. So he took time to make sure that we understood that we really do have a choice in this. This is not a mandatory or life-saving surgery.

It is simply something that we hope will help Patrick to eat more, vomit less, and overall be more comfortable.

And we want him to be able to enjoy life to the fullest extent possible.

I guess I must have needed a reminder of why this surgery would be helpful, though. So, Saturday morning I was woken at 6:30 by the sound of Patrick moaning in bed. Just after 7, it started to sound as though he was trying not to throw up.

I went in to find him completely tangled in his g-tube. The twisting was probably enough to stop any flow from the tube, but to boot, it was clogged. In trying to get him untangled to find the end and fix the clog, I moved Patrick the wrong way. That was one thing too many and he started throwing up — and couldn’t stop.  Finally, after what seemed like an eternity, I was able to get him sorted out enough to get the drain flowing again and he settled down.

Patrick crossed the 2 liter threshhold yesterday for the first time ever. I drained over 2 liters of fluid from his stomach and replaced it with IV fluids.

He was up at 3 a.m. because his tube stopped flowing again and I spent from 4 a.m. to 6 a.m. in his room last night making sure his stomach really, truly was empty and running replacement fluids to keep him from getting dehydrated.

Today, we started antibiotics again, stopped every hour or two to drain his stomach, ran fluids almost constantly, and changed out his button in case that was the cause of the plugged tubes. (Changing the button is so uncomfortable for Patrick that he literally just breaks down every time we do it, so this should give you an idea of just how serious this problem has gotten.)

Anyway – it’s been quite the day and a good reminder of just why we started talking about this surgery in the first place.

Let’s see, what else should you know about the surgery? Patrick will probably spend at least a week in the hospital allowing his incisions to heal and waiting for his bowels to start working again. Then, he’ll need another pretty restful week at home. It will be a total of 4 weeks before he can do any “heavy lifting”.

Until the 12th, I’ve declared this the month of Patrick. We are going to throw in all the end of summer fun as possible while he’s feeling good and the weather is nice. Yes, we did additionally plan the surgery one week later than necessary simply to make sure that Patrick got to go to the State Fair.

P.S. Isn’t Patrick handsome in his new suit?

In speech therapy today, Patrick’s therapist started by asking him to climb up onto his chair. The chairs in the therapy room are not particularly large and they aren’t particularly stable. Patrick’s only just learned to climb onto furniture at all. Like, literally, within the past two weeks.

I wasn’t sure what he’d do. At first, he was pretty confident. He walked right up to the chair, got a good hold, and climbed on. He ended up kneeling on the chair, though, and didn’t know how to fix it. In trying, he ended up on the table instead.

The therapist was persistent, though. She just kept asking him to get up on the chair and luring him over to show him the fun puzzle she had picked for him to play with.

To his credit, Patrick didn’t give up. He’d come over and rethink the problem. He tried to find ways to get her to let him play without climbing up. And when that failed, he tried to get her to let him choose another toy.

The point of the exercise was NOT for Patrick to learn to climb onto his chair. The point was to get him to use his language to ask for help.

Finally, he went up to her and told her “stuck.” That was enough of a request for help. She told asked him to say “help” and then they practiced that word and the correct form of the sign. And then, she helped him to climb into the chair and they had a great session playing with puzzles and pirates.

I think I’m a lot like that sometimes. It’s not that I don’t want help. It’s that sometimes I don’t even understand the problem well enough to know what to ask for.

I guess I’ll only learn by continuing to try.

One trend that I’ve noticed is that when life gets stressful, Patrick’s gut gets sicker. So of course, as the month of July has been one big busy, stressful month, of course Patrick’s tummy hasn’t felt well.

First, his drainage tubes stopped working as well. I wish I could figure out why it happens. There’s not really a rhyme or reason to it. Just eventually they get too old and they stop draining as well and I start having to get up in the middle of the night to check on them. Every night. And eventually I catch on and replace all the tubes and they start to work better. Unless, of course, Patrick clamps them during the night or opens a port or takes them off. Because when his tummy hurts, he doesn’t sleep as well, and then he plays with the tubes more which is just another reason why whenever this is happening, I set my alarm for 3 a.m. so I can sneak into his room and make sure his belly is draining and he’s getting enough fluids.

Because whenever this get out of whack he starts secreting more, too, and if I’m not vigilant he’ll start vomiting and/or get dehydrated very quickly.

So the night that Brian got home from trek, Patrick got sick during dinner. And by the end of that weekend, his output was on the rise.

Monday I made a mistake that probably made the problem worse. I was feeling a little bit off all morning and as I was grocery shopping decided that maybe a little protein would help. So, I grabbed a can of cashews. I intentionally skipped the peanuts because of Patrick’s peanut allergy. But I forgot about the higher risk of cross-contamination with all nuts.

Well, I ate a couple of handfuls of cashews on the drive home, then took Patrick inside and got him ready for his nap. While I was changing his diaper, a hive appeared on his cheek and I immediately knew he was reacting to my eating cashews.

So, I grabbed some zyrtec, his allergy medicine of choice, and gave him a half dose. Then finished getting ready for naptime.

Meanwhile, his eyes got all red and watery and the one blotch on his cheek started to spread to total redness around his mouth. So I drew up the other half dose of zyrtec and gave it to him.

That dose made him start to cough. But he kept coughing, and couging, and coughing, so hard that it started to make him gag and throw up.

I carry an epi pen and my instructions are to give it with any signs of respiratory distress, and then to call 911 and have them take us to the emergency room.

However, I knew Patrick was having a bad gut day and I didn’t want to go to the hospital and have someone else take over his care and risk him getting dehydrated along the way if I could avoid it. And once you have epi, you HAVE to be observed in the hospital.

So, not knowing what else to do, I grabbed the phone and called 911, got out my epi pen, and started to pack essentials for a trip to the hospital.

The paramedics arrived in about 5 minutes and by the time they got here, the zyrtec was finally working and his coughing had stopped. The redness in his face was fading, too.

The paramedics watched his breathing, listened to his airway, and put on a pulse oximeter to check his oxygen levels. All the time, he kept getting better and better. Finally, after about 10 minutes of evaluation, they said that they didn’t think he needed to go with them in the ambulance. I signed a few things and they left us. I called his allergist to let him know about the incident and find out if there was anything more he wanted me to do.

Then, I went to rock Patrick back to sleep. The doorbell rang, a neighbor come to check on us. And when I got back to Patrick a few minutes later, he’d lain down in the recliner and gone to sleep.

What does this have to do with his gut? Well, allergic reactions can impact the gut for several days afterwards. And as we were already on the upward trend, this tipped the scales.

I started draining nearly two liters a day from Patrick’s stomach. Most likely, this was a combination of blockages allowing bacteria to grow.

Still, as stable as he seemed with all that fluid lost and replaced, I didn’t feel I should leave it unnoted.

So, I called his Dr. Jackson’s nurse and left a message. Then we went on with our normal life, including our trip to the mountains and some fun touring downtown with his cousins. (These pics were taken on the roof of the conference center and at the children’s exhibit at the LDS Church History Museum.)

The antibiotics I gave for bacterial overgrowth finally started to work after a couple of days, and that’s when Dr. Jackson called back. I told him what had been going on and he agreed that it was a bit worrisome. We had some cultures drawn, just in case, but they stayed negative.

And, we decided it was time to have a better look at the problem.

So, Sunday afternoon Dr. Jackson called to tell me he’d been able to add Patrick to the schedule for Tuesday for an endoscopy. Monday was a state holiday, so everything was closed.

We made the appointment for late Tuesday morning. Brian went to work and I got up and got Patrick dressed in his comfiest clothes, packed for all scenarios, and then went to the hospital.

Usually a scope takes about half an hour, but this one took much longer. That wasn’t a surprise, we knew that Patrick isn’t your normal case and Dr. Jackson was going to be VERY thorough.

I was less bothered by the wait than by the fact that they’ve redone the surgery waiting room and put little dividers in to improve privacy. Changes to my medical routine are disconcerting. And besides, how was I going to entertain myself by people watching when all the people were in nice private little compartments?

Finally, Dr. Jackson came with some results. Mostly, they confirmed what we knew, but what some doctors had questioned. They also brought good news.

Despite all of the reflux and stasis, Patrick’s esophogus is healthy. His stomach is, too, except for a little wear right where it drains into the intestine.

As we already knew, the duodenum is very distended. “Cavernous” is the word Dr. Jackson used to describe it. Almost it’s entire surface is covered with little raised bumps known in the medical world as lymphoid nodular hyperplasia, or nodules. This is a sign of inflammation in the intestine and could be a result of food allergies or just irritation from constant stasis and bacterial exposure. Dr. Jackson took biopsies to find out which. If allergies are to blame, then we can work together with his allergist on a plan to better manage them.

Finally, Dr. Jackson was able to see the connection between small and large intestine. He describe this as “what looks like a dead end with lots of folds. But there was a tiny slit in it.” He put the scope through that slit and found… Patrick’s colon. Which is healthy.

This is obviously the cause of Patrick’s blockage and distension.  The narrow connection used to put his intestines back together has never grown. It’s so small that little passes through it when it’s empty, and when things go wonky, nothing gets through at all. So we talked about the option of having Patrick’s surgeon go back in and redo the connection. And we agreed that he and the surgeon here would take all of this information to the transplant surgeon and GI in Seattle.

Hopefully, together they can come up with a recommendation of how to proceed.

It’s pretty obvious that leaving this untreated is just going to cause more and more problems. And we’re sad that another surgery is probably inevitable. However, we were relieved that this surgical option is on the table because it can treat the cause, not just the effect, and they may be able to operate on just this small segment instead of the entire length of the intestine.

Oh – and one other finding: Dr. Jackson removed a sterile cap from Patrick’s intestine. Who knows how long ago he swallowed it, because it couldn’t make it through the slit. We are being much more vigilant about cleaning up caps left lying around and not letting Patrick chew on them. The chewing gum he swallowed the sunday before the test, however, was not there. So I’m still letting Patrick chew gum.

Letting Dr. Jackson get up close and personal with Patrick’s insides got us some much better answers. Knowing for sure what is going on is a big relief.

Patrick wasn’t too happy waking up from the anesthesia, but once he’d burped some of the air from his stomach and had a nap, he was up and playing. We came home and watched some bob the builder and read some books and by bedtime, he seemed to have forgiven us the inconvenience.

In fact, he forgot all about it when we took him to Hollywood Connection and let him play his very first game of miniature golf. His job was to get the balls back out of the hole. He was good at it, but then would just put them back in again.

Playing mini golf while connect by IV lines to your 2 year old is challenging to say the least. I’ve never had my adrenaline so high in a mini golf game before in my life!

 

For the past 2 weeks, Brian’s brother has been visiting from North Carolina. Because they live so far, we don’t really get to see them very often. Getting them here for so long was really a treat.

And as eastern “mountains” are nothing at all like the Rocky Mountains, one of the things they wanted to do while they were here was to go camping.

Now, I know that there are other TPN families that go camping. However, most of them don’t have TPN running for as many hour as Patrick, nor do they have intermittent IV medications to give. Cleanliness is a factor. (I never used to be bothered by campsite potties or even camping without potties, but things have changed.) Temperature is a factor. (Don’t really want IV fluids to get too warm or too cold.) And having to drain a belly by gravity adds a whole level of complexity to sleeping away from home.

And so, we have decided that we don’t dare try overnight tent camping with Patrick.

And, since they were camping midweek the week after Brian got home from trek, spending a night or even a whole day was out of the question.

Still, Brian and I both grew up in the mountains and really want to share this with Patrick. So, Brian made arrangements to leave work early one of the days that they were camping so that we could take Patrick.

We arrived late in the afternoon, just as they were getting ready to take the canoe out on the lake. It was also just as Patrick was being disconnected from his TPN, so he was a little more free.

Patrick thought playing by the lake was great fun. Earlier that day, I’d introduced him to the idea of wading in a stream at a local park with a manmade stream that kids play in. So he was ready to head right down into the water.

 

 

 

 

I hadn’t known to prepare to get wet, though, and hadn’t brought him a second pair of shoes, so he had to settle for standing on the bank throwing rocks into the water.

Then Brian got brave. He decided to take Patrick out in the canoe. I covered his dressing with an aquaguard, though that would certainly have done nothing to protect him if they overturned. More importantly, we put a life vest on him, and then they climbed into the boat.

Patrick wasn’t so sure about the unstable feeling of being in a boat.

But he likes to sing “Row, Row, Row Your Boat” so he was game to at least try it. Brian left me on the shore with his camera.

 

After his first boat ride, Patrick was content with adventures on dry ground. He climbed rocks (with help) and ran until he fell down. He watched fish.

Back at the campsite, he got to go with his cousins to play in their tent, which he thought was great fun. He thought that the tent trailer was the greatest of inventions. (Which is good because we think a tent trailer may be what we need to actually be able to take him camping.) Granny made soup for dinner, and so he thought he was in heaven.

 

We left as the sun started to go down and got home between 9 and 10. Patrick had worn himself out and slept the entire ride home. Sadly, though, he woke up just as we arrived.

He didn’t sleep again until 1.

He was just too excited about the day. I sat up with him and he just kept telling me “Papa” (Grandpa), “Ma-mah” (Grandma), “Drr rrr” (Amber, a cousin), wa-wa (water), bo (boat), wah (rocks), sssooop!… and on and on and on.

I loved seeing how much fun he had and just kept thinking while we were up there “Maybe this is do-able.” Maybe one of these days we’ll get brave enough.

That is if I can get over my fear of Patrick dragging his tubes across a firepit, or disconnecting or breaking them and dragging them in the dirt, or spiking a fever in the middle of nowhere, or having an anaphylactic allergic reaction, or….

At the beginning of the year, Brian was called as a counselor in the Stake Young Men’s presidency. If you’re not familiar with this aspect of the Mormon church, this means that he was asked to volunteer as one of three leaders over the program for boys age 12-18 in 7 congregations in our area. The program combines a very spiritual aspect with fun activities and the Boys Scout program to hopefully help these young men develop a good solid foundation for the rest of their lives.

When he first accepted this assignment, we were told that they were planning a pioneer trek for their summer Youth Conference.

Basically, along with the Young Women’s presidency, they’d be planning to take 130 teenagers and adults to the middle of Wyoming where they’d dress in pioneer clothes and spend three days pulling handcarts through the hot, barren prarie and visit some historical sites. The hope was that they’d gain a better appreciation for the sacrifices made to give them the life they have today and a stronger relationship with each other and with the Lord.

To understand why one might think this kind of venture a good idea, you probably need a little bit of Mormon history. See, when the church was new and small, but quickly growing, early members were persecuted and literally forced from their homes over and over again until finally they decided to head West. They travelled by wagon train to Utah and started a new life there.  There, they hoped to find a place where they’d be free to worship together in peace.

Meanwhile, though, converts were joining the church at a rapid rate in Europe and were eager to join with the other “Saints” in America. However, many couldn’t afford the journey. And so, church leaders started to organize handcart companies. Converts travelled by ship and then by railroad as far as they could, and then they pulled handcarts loaded with their possessions from Nebraska to Utah.

The trip was challenging, but most made it safely through. However, two companies were late in arriving and ended up trapped in blizzards in Wyoming without enough rations. All suffered and many died.

This year’s trek visited the sites where these companies camped and were eventually rescued.

Starting to see the lesson they were hoping to teach our teenagers about?

Like the handcart companies, our youth leaders seemed to be a bit late in beginning the planning for their trek. To make up for it, in the months leading up to it, Brian’s had many a long meeting as they worked to prepare. He was most all afternoon every Sunday and most Wednesday evenings, too.

Of course, with Patrick to care for, it wasn’t an option for me to go on trek (though many couples went). But I wanted to be a part of the experience. So, I dove in learning the history by watching movies and reading pioneer stories. I tried to tag along to Rawlins, WY so that Brian could go to a training. I even found us a nice bed and breakfast to stay in. But Patrick got sick and we spent that week in the hospital instead.

And so, since I couldn’t go anywhere near trek physically, I took the second best thing and joined in the preparation work. Brian came home one Sunday and asked if I’d help make a logo for their bandanas. And so, I spent a Sunday designing sample logos for them to choose from.

And then, he offered to help put together a booklet of pioneer stories, schedule, and songs. That project was a beast! I can’t tell you how many nights I stayed up past midnight (since I couldn’t do it while Patrick was awake) laying out pages, typing pioneer stories, editing songs, and even assembling the thing. 144 copies of a 40 page booklet is a significant feat!

Still, it let me be spiritually a part of something that I couldn’t attend physically.

It was kind of hard for me to not be able to go. When we went to buy Brian a new sleeping bag for the trip, I cried for the entire day. As much as I love life with my little boy, meeting his needs often means staying behind and sometimes it gets very lonely. And it often means sacrificing things I love.

At long last, the day came for them to leave. We got up early on a Thursday morning.. before the sun… to drive Brian to the church. Patrick was confused about what we were doing. But he was excited about the charter busses. I had to drive back past them 4 times so he could see them before we left. Then we went out for breakfast, just because.

I’m glad I had the Garden Tour to distract me. Still, my mind kept going back to my husband up in Wyoming and the pioneer stories I’d been reading for months. And thankfully, three days went by quickly and before we knew it, we picked up a very dirty daddy and said a fond farewell to the charter busses one last time.

Then, we made a mad scramble on one final project. We collected pictures from the people who’d been at trek and assembled a slide show to be shown in a meeting on Sunday night. This was really a great way for me to hear all about what Brian had done all week and what he’d learned.

But, since I’m not really in a place to tell those stories, I’ll tell what I learned instead.

As radically different as our lives are, I have learned to feel a kind of kinship with the pioneer women.

In one of the stories I typed, I read:

“When little Daniel (age 18 months) died, Aug 12th, I rode the cart holding his wee body until we camped and he could be buried. Soon afterwards, I birthed a baby boy; alas, he lasted but a few short days.”

I haven’t lost a child. But since Patrick entered my life, I’ve met many mothers who have. And I have felt my little boy stop breathing in my arms. I understand now in a way I never could before just what it might have been like to hold your baby boy in your arms, knowing it would be the last time. My heart aches for those women who lost children and husbands on the trail. And I am so much the more grateful that because they carried on, I am here today.

Which brings me to another thought and another quote.

“The Latter-day Saints need to remember that those of us who live now are being called upon to work out our salvation in a special time of intense and immense challenges. The last portion of the dispensation of the fullness of times is a period during which great tribulation and temptation will occur. . . Therefore, though we have rightly applauded our ancestors for their spiritual achievements and we don’t and must not discount them now; those of us who prevail today will have done no small thing. The special spirits who have been reserved to live in this the dispensation of the fullness of times will one day be praised for their stamina by those who pulled the handcarts.” – Elder Neal A. Maxwell

This quote bothered me when I first read it. I think I’ve been a bit innundated by talk about the “last days” and the “chosen generation”.

But, as I’ve thought about the handcart pioneers and their trials while living on in my own trials, I have realized that we really do face a unique and difficult set of trials.

Pioneers had no NICU’s. Babies who were premature or had a birth defect like gastroschisis didn’t survive. Heck, up till 20 years ago, Short Gut patients didn’t survive. Transplant wasn’t even a consideration.

And while I would never, EVER want to experience the agony of frostbite and starvation and exhaustion and crossing frozen streams and wondering if help would ever come… and I can’t even comprehend burying a child in the snow along the trail because the ground was too frozen… I can see now how a pioneer woman might see our family’s battle against prolonged illness and desperate struggle for survival as it’s own rugged trail.

One tradition of the pioneer trek is the “Women’s Pull”. In the closing meeting of the conference, they invited the youth to stand and share their thoughts. At least 80% of them mentioned this as the most memorable moment.

As they approach one of the steepest hill of the trail, they take the men away from the company. They talked to the boys about how many women made this journey alone, either entirely, or after losing a husband. They talked to them about respecting and appreciated women. They told the girls about how there may be times when they find themselves facing challenges alone. And then, the girls pulled the carts up the hills while the boys watch. There is rarely a dry eye when it’s done.

Ironically, while person after person told this story, my mom brought Patrick to me at the church and I took him in the halls… alone.. to entertain him till the meeting ended.

And I couldn’t help but think about my few days without my husband and how much harder things are when he’s away.. and the many times I’ve faced crises with Patrick when no one else could be there to help. And how lonely and sorry for myself I’d felt. And I realized that while I am facing my own set of challenges, I am fortunate that I am rarely asked to face them alone for more than a few hours or maybe a few days.

And, like the pioneer women, I am never really left alone. Because my Heavenly Father is there.

One last quote and then I’ll end my philosophical history lesson. From a favorite pioneer hymn:

“Why should we mourn or think our lot is hard?

‘Tis not so; All is right.

Why should we think to earn a great reward if we now shun the fight?

Gird up your loins; fresh courage take. Our God will never us forsake;

And soon we’ll have this tale to tell-

All is well! All is well!”

I think I’ll end with a few pictures of my own Pioneer.

 

 

 

Wow! What an eventful couple of weeks! It’s going to take me forever to capture it all in writing. I think I’ll start by telling you about our day at the Mountain Valley Garden Tour.

I already mentioned how excited I was after the reception we attended for garden owners and volunteers. I am still in awe at the kindness of these people whom we had never before met! They opened their hearts and their homes to us and I will be forever grateful.

The tour ran Friday and Saturday. Since Brian was away on a pioneer trek (I’ll tell you about that in another post), I decided I could probably only handle attending one day with Patrick.

So that I wouldn’t be doing it alone, my mom and my good friend Tifanie came along. We left here bright and early and arrived at the first garden moments before it was scheduled to open. We were thrilled to find that it belonged to the one garden owner that we hadn’t been able to meet at the reception.

The tour organizers gave Patrick a gift basket of toys and music and other things to entertain him on that day’s drive. In that basket was a little garden shovel and rake. And the rake was his favorite of all the gifts. After greeting our hosts, he set to work in the garden right away. However, instead of raking the dirt, he busily combed the flowers with his rake. And he did it everywhere we went.

 

 

It was fun to meet and visit with the people who were there. They all loved meeting Patrick and he charmed them as only he knows how.

You could always spot one of the visitors because they were decked out in their adorable gardening clothes.

At 11:00 they had planned a meet and greet at one of the gardens. Loretta and Shan, the owners of that garden, were very kind and enthusiastic to have us there. They let Patrick feed their fish. (They have a trout pond almost as big as my entire front yard! Patrick loved feeding them. At least, until one jumped and touched his foot. Then he wouldn’t sit down by them anymore.) They let him pet their dogs. Shan even let Patrick rake his hair. And before sending us on our way, Shan who is an entertainer by profession, made Patrick the most amazing spiderman balloon.

 

 

 

By the time we left there, Patrick was pretty exhausted. We were going to head home, even though we’d only been to a few gardens. However, we noticed that one garden’s description mentioned it had antique cars and, well, that sounded like Patrick’s dream garden.

So, we grabbed some lunch and started the 30 minute drive from Park City to Heber to see the cars.

Patrick fell asleep immediately.

And when we got to Heber, he was still asleep.

So, Tifanie and I decided that, since we’d come all that way, we’d at least go in and see the garden and thank the owners and volunteers. The kind man who owned the garden and the amazing garage full of antique cars offered to let me bring Patrick back another time and we were on our way back out.

And that’s when Patrick woke up.

So, since we had come all that way, we got him out and let him look. He was in heaven! The garage had 6 antique cars in it and Patrick just ran from car to car touching the wheels and making faces in the bumpers and trying the door handles. I’m sure that they had to polish all of the cars again after we left. But they were so kind to let him explore!

It was a perfect day and all of the gardens we saw were so beautiful!

We made one last stop to thank the volunteers running the silent auction at the grocery store in town. And then we drove back home.

We still haven’t heard final results from the fundraiser, but we know that there were 83 attendees on just Friday.

This event came along at just the right time. It’s been a long time since our little fundraising account has seen any activity and COTA was beginning to ask me if we were done with fundraising. While I know that many of us are tired and feel we’ve done the biggest and best we can, our thermometershows we still have $50,000 to go. And in a month where we had unplanned home repairs and travel for checkups in Seattle and hospital stay expenses and tax woes, it was nice to see that people really do still care and want to help. It left me wondering if maybe it’s time for another restaurant day or facebook or e-mail challenge again. What do you think?

I can’t express enough thanks to the people who put this garden tour together. A few months ago, they had never even heard of our little family. And yet, they just put their arms around us. If any of you involved are reading this, thank you for your love and support. Thank you for helping us in our journey. And thank you for a much needed dose of hope.

What the tour organizers didn’t know was that they happened to schedule this event on Patrick’s second Miracle Day. July 15 is the 2 year anniversary of the day that Patrick’s heart stopped and then was started again. I couldn’t have planned a better celebration.

 

It seems that every time I turn around these days there is another drug shortage that threatens Patrick’s health. Today, I spent over an hour on the phone trying to figure out the best oral form of L-carnitine to give Patrick, who is showing carnitine deficiencies but can’t receive them in his TPN because of shortages. Sadder still is the fact that I did all that work for a nutrient that he most likely can’t absorb in oral form anyway.

This was the final push I needed. I’ve been working on a draft of a letter to my state senator inviting him to help sponsor legislation that would require drug companies to actually tell the FDA when they expect that they won’t be able to produce enough of a drug so that they can try to encourage others to boost production.

I will mail this letter to the Senate today:

Dear Senator Lee,

My name is Emily Hoopes and I am mother to Patrick, a 2 year old who is waiting for an intestinal transplant. Patrick was born with a rare birth defect that led to the loss of his entire small intestine, a condition commonly known as Short Bowel Syndrome. Without a small intestine, Patrick cannot absorb nutrients from the food he eats. He relies entirely on intravenous nutrition, supplements, and drugs in order to grow and stay healthy while he waits for transplant. For the past two years, Patrick has beaten the odds time and again, defying doctor’s expectations. He is a happy, healthy, and active toddler, as long as he has this intravenous help to maintain nutrition and hydration.

That is why I am writing. Recently, an alarming number of drug shortages have occurred across the country, many of which have had a direct impact in Patrick’s quality of care. I am writing to ask your help in addressing the patient harm that is caused by drug shortages. Specifically, I am asking you to cosponsor S. 296, a bill that would help address the issues leading to drug shortages.

We are facing a drug shortage crisis in this country. Currently the American Society of Health-System Pharmacists (ASHP) DrugShortageResourceCenter lists 150 drugs in short supply. These include life-saving drugs, drugs to relieve pain, drugs to treat serious infections, medications used to provide parenteral nutrition (intravenous nutrition like my son uses), chemotherapy medications, and more.

Where these drugs are unavailable, doctors have been forced to use alternatives that have safety concerns, higher risk of error, and increased healthcare costs. When an alternative is unavailable, patients have no choice but to go without and hope for the best.

Since the beginning of the year, my little boy has already been directly affected by these shortages several times. In just the past few months, he has gone without several essential drugs, including vitamins, calcium, carnitine, amino acids, erythromycin (an antibiotic and motility medication), and ethanol (used to prevent infection.) There are also national shortages of other nutrients such as trace elements, vitamins, and electrolytes. Because Patrick cannot absorb nutrients by oral intake, when intravenous forms aren’t available, he simply goes without. For him, this means malnutrition and risk of serious complications. If this weren’t enough cause for concern, shortages of antibiotics and ethanol put Patrick at greater risk for a life-threatening systemic infection. Put more simply, a shortage of even one of these drugs can mean the difference between life and death for my son. With them, he has a good chance of surviving until he can receive a transplant. Without them, his prognosis is poor.

My son is not the only one whom these drug shortages have hurt. I am the founder of the Short Gut Syndrome Families’ Support Group, a national support group for children and families affected by Short Bowel Syndrome. Several of our members have felt the impact of these shortages and their children have been put at risk as a result. Just within our local chapter and hospital, rates of infection have increased, as have the number of nutritional deficiencies. As parents, we are scared for our children.

S. 296 would help improve communication between the U.S. Food and Drug Administration (FDA) and drug manufacturers. The legislation enables the FDA to work with drug manufacturers to establish contingency plans for manufacturing interruptions such as raw material shortages, adjustments to production capabilities, and product discontinuations.

Although I typically am of the opinion that less government regulation yields better results, the growing number of drug shortages is evidence that more needs to be done. S. 296 gives the FDA the resources needed to improve this problem.

Thank you for reading my story. And thank you in advance for your consideration to cosponsor S.296.  Please do not hesitate to contact me if you have any questions or would like more information. I look forward to working with you as we work to resolve this import public health and patient safety issue.

Sincerely,

Emily Hoopes

If you’d like to know more about the drug crisis, just google “drug shortages”.

In case you haven’t noticed, when my life gets hectic and I’m feeling overwhelmed, I stop blogging. Either I don’t have time, or I’m afraid that my emotions will get the better of me and I’ll post something I shouldn’t have.

Well, I’ll confess that my long hiatus between blog posts was one of those cases where I wasn’t writing because I felt like I was barely treading water. Between medical choices and a hospital stay and a holiday and youth conference and remodeling and mold and taxes… I just didn’t want to talk about it.

Brian and I just kept saying one one bad night that had us up past 1 after barely sleeping the previous two nights that surely this was all a sign of good things to come.

Well, tonight I found the good things. I am so filled with joy that my heart is brimming!

Tonight, Patrick and I attended a garden reception with the planning committee and garden owners responsible for the Mountain Valley Garden Tour that will be happening tomorrow and Saturday. I am so completely overwhelmed by the absolute love and kindness shown to us by people who are complete strangers to us!

All week long I’ve been listening to radio spots and reading news articles and watching TV interviews about the Garden Tour and every time I heard about it, it started sounding better and better.

If you’ve missed my shameless advertising, they’ve planned an event similar to the Parade of Homes… only it’s the chance to tour private gardens throughout Park City, Midway and Heber. That’s what I found out before. But through the advertising, I’ve learned that there will also be gardening workshops. And, there will also be live bands. And there will be a silent auction. And there Jazz Bear will be there. And.. well… it’s going to be simply amazing! Two days of garden bliss!

At least, that’s what I got a taste of tonight. First of all, I was worried about driving all the way to Heber – an hour through the canyon – that late alone with Patrick. But I got on the road and realized that it wasn’t much longer than I drive when we are in rush hour.. Only it wasn’t rush hour. It was beautiful mountain scenery! It was fresh air! There were cows!

We arrived just a little early, so I decided we could stop at Dairy Keen – a local hot spot burger joint with a toy train that goes around and around the ceiling. I stopped so Patrick could see the train. It was worth it.. he was in heaven.. But while I went to pick up my burger, he dumped his cup of water in his lap.. And by the time I got him changed into dry clothes – instead of being a fashionable 10 minutes late, we were half an hour late.

Thankfully, they understood.

And Patrick more than made up for it. He was a perfect angel tonight! Social as can be. He went and personally greeted every single person there. He even played with one girl’s celery for a good 10 minutes straight.

Ronald McDonald made a guest appearance tonight. We weren’t sure how this would go over.. But once I pointed out his big red shoes, and then Ronald let him stand on them to reach his big red zipper.. Patrick was sold! They were friends from there on out.

Thank goodness someone else there had a camera, though, because Patrick was so quick that taking any pictures of my own was impossible.

Those will have to come later.

Anyway, we took pictures with Ronald (a.k.a. “Ro-Ro”) and all of the guests and then Patrick wandered and looked at the gardens and mingled some more. I even got a second to sit down and eat a very yummy, though messy, eclair.

The event organizers had a gift bag for Patrick all full of fun things like CD’s and stickers and toys and his own gardening shovel and spade (which he will LOVE! because they’re real metal). They said it was to keep him entertained in the car for all the extra travel he’d do this weekend.

And then we said our goodbyes. Patrick would have stayed another hour. But I knew he’d be too tired tomorrow. So I took him to the car and put on his pajamas. We drove home listening to soft music. He fell asleep and I got a peaceful one hour drive down the canyon as the sun set over the mountains and lake.

I can’t tell that these words aren’t really capturing it. But trust me.. this evening was amazing! A true gift!

I don’t think I’ll ever get used to this kind of attention. I never feel like I know the right things to say and do. Thank goodness Patrick is so good at it that it almost makes up for me.

The thing is, though, that there are no words or actions that can really capture what it is to have people just reach out and help you and love you like this! There are no words to capture the absolute treasure it is to have been given a summer evening with my son.. of giving my son the chance to just be a little boy… even if it was all done because he’s not your average little boy.

If this evening is a foreshadowing of the next two days to come, then this weekend is going to be wonderful. I wish more of the people I love could share it!

I guess I could throw in one more plug. It isn’t too late to buy tickets. They’ll be for sale for $15 tomorrow and Saturday at any of the gardens. Just go here http://www.cotaforpatrickh.com/node/315 and follow the link to their website and there’s a list of locations.

Patrick and I will be back there Saturday morning at 11 a.m. at the Paulus garden in Park City. With trout. And the Jazz bear. Seriously, how can you resist that?

It had really been too long, don’t you think, since we holidayed at the hotel on the hill?

Last Sunday, Patrick wasn’t quite himself. He was AWFUL in church! And then I took him to his nursery class only to be pulled out half an hour later by the concerning news that he was vomiting.

And oh boy was he! He was covered! So I wisked him home, changed his clothes, drained his belly, and put him to bed. He slept 3 hours. Straight.

At 4, we got him up to go to Sunday dinner with my family. He went to play with his cousins, but then came back quickly and asked for Brian to hold him. And just layed down in his lap.

NOT normal.

Then he got shivery and started to get goosebumps. We knew we had to go. These were the early signs of rigors again and it was almost certain that he’s have a fever of 103 or above within an hour.

We said quick goodbyes, hopped in the car and drove straight to the hospital. Halfway there, his fever shot through the roof. He was trembling and every few minutes would shake so badly that it was almost a convulsion. He was terrified. So was I.

We called ahead and told the GI on call that we were coming. Thank goodness it was Dr. Pohl, a GI whom we trust and who has taken care of Patrick at his worst. He knew we needed to be careful.

So, he had us go straight to the ER. They took his vitals and he was admitted immediately under the septic shock protocol – level red. His temp was over 104, his heart was racing and his breathing was shallow.

You know you’re level red when the doctor comes into the room.. immediately. Tailed by a nurse practitioner. They did a quick evaluation and ordered several STAT labs, including blood cultures. The nurses were running. Patrick was miserable. No one had given him anything for the fever in the rush to get him treated. However, fluids were running and they started antibiotics next.

With extra fluids, his heart rate started to come down a bit and his blood pressure looked better. We asked permission to start his TPN. (He’d been on his break) and got it. They finally got some tylenol and started to feel better. We watched Elmo in Grouchland 3 times.

However, the first antibiotic they gave him caused problems. For some reason, the pump gave it at twice the prescribed rate.

And then his neck started to swell right where the central line catheter entered his jugular vein.

So they stopped the TPN and the next antibiotic and we got to take a trip to X-ray to make sure that the line was still viable.

The good news is that it was. The bad news was that Patrick was developing hives. Probably a reaction to the med going in too fast.

So they restarted the antibiotic, but didn’t let us restart the TPN.

Mistake. The next drug was vancomycin. With the histimine already in his system, Patrick had his first every “red man’s syndrome” reaction. He turned beet red and started to itch.. everywhere.

Finally, we got some benadryl and all the redness and swelling and hives went away.

And then they admitted us to a room.

Because we’d run to the hospital, we only had a diaper bag with us. None of the usual supplies. So we had to jury rig a drainage system for Patrick from the parts the hospital could find. It worked, but it distracted the nurse and it was past midnight before she got the maintenance fluids (like TPN) running. Scary, but Patrick did ok. With tylenol, benadryl, and antibiotics on board, he was back to himself.

They watched him closely through the night and then for most of the next day they asked us to keep him on monitors.

This was a bit tricky because he doesn’t like to hold still enough for them to stay attached, let alone read. But we did our best to entertain him on the bed.

We made the choice this stay to let him have a big boy bed for the very first time. This was nice in that when he fussed during the night I could just crawl into bed next to him and cuddle him back to sleep.

It was challenging, though, in that I snore. And our second night in the hospital, he let me know it. Things started out ok. After watching 4th of July fireworks and the life flight helicopter from his hospital room window, he went to sleep fairly easily.

However, a code on the floor woke him at midnight. He jumped up and his g-tube got caught on the bed rail and got tugged. It stayed in place… but was very sore and we had an adventure trying to check to make sure it was still ok.

He didn’t sleep again till 6 a.m. He’d almost sleep, but I was so tired I’d fall asleep trying to help him sleep and the next thing I knew a little hand would be patting my face and Patrick would imitate my snoring. I was keeping him up.

Thank goodness for kind nurses who take toddlers for walks at 5 a.m. to their mommies can sleep. And for other kind nurses who will tiptoe around all through the day shift while little boys make up for staying awake all night.

We stayed 72 hours in the hospital, waiting for the blood cultures to grow to explain the fever. They never did. Either it was viral (which seems unlikely, given the quick recovery)… or the bacteria never got into his line.

Meanwhile, as the above pictures demonstrate, we learned how to keep a 2 year old entertained in the hospital.

This is good news, though it does make me nervous as we only gave 3 days of antibiotics and are now home without any further treatment.

So far, so good.

Just a little reminder to me that I’m not exaggerating when I call Patrick medically fragile. Things can go from OK to life-threatening at the drop of a hat.

Hoping we don’t have another scare like that for a long, long time!