Category: Uncategorized

I’m sorry for those of you who’ve waited so long for an update. Again, I let myself get so wrapped up the demands of mommy and nursing duties that I would pull out my computer in spare moments and just stare at it, too exhausted to type. Things are getting calmer finally so I’m devoting a piece of naptime to a quick blog entry.

When I last posted, Patrick was feeling like this:

We’d just found a way to stop him from itching, but he was still needing pretty high doses of pain medicine and was really out of it. He was, at least, though, trying to sit up and play as often as he could. Attempts at walking hadn’t gone very far.

Well, the next day his pain was a bit better and we decided to try two big things: getting dressed, and going for a walk.

Thankfully, he had a great nurse who listened to how to motivate him. So first, we made him have a bath and then offered to let him wear his Chicago Blackhawks sweater and a pair of “daddy shorts”.

Second, I told her that Patrick was most likely to walk with a wagon. So – she stashed one of the very most comfortable wagons for him. It was took about half an hour and lots of resting for him to walk 3 feet with the wagon. And then, as a reward, we put padded the wagon and let him play in it. (He looked a lot more steady that way, anyway).

He was sold and Patrick from then on tried to spend as much of his awake time as possible in the wagon. This was good as sometimes getting in and out was a bit painful. . . But with it only took one demonstration to convince him just how comfy it could be to lay back in a pile of pillows in the wagon to rest instead of getting in and out.

He made some other big strides, too. For one thing, his intestines finally woke up and he started pooping. Not just a little like he had been doing, but a lot like you’d expect from a kid with Short Gut Syndrome. I almost woke the entire pod when I found his first truly dirty diaper.

Once that happened, his doctor let us switch to g-tube downdrain and remove the tube from his nose. Patrick knew how to make it happen. He took the tape off his nose just as his surgeon came into the room and the doctor gave the ok to just leave it out.

We kept working on walking, too. In the surgical unit at our hospital they have fish on the floor every few feet. A few times a day, we’d leave the room and see how many fish he could walk on before he got tired. First it was to the second nurse’s desk. Then to the doors exiting the unit. And finally, one day he decided he’d like to go see spiderman. It took an hour to make the walk to spiderman and back, but it was well worth the effort.

We alternated walking with wagon rides. Besides spiderman, Patrick’s favorite destination was the patio. On the street below the patio is a trax train stop and several bus stops. So we’d watch and cheer for trains and busses and just enjoy being outside.

Patrick’s a little bit spoiled in the hospital. Not only do the nurses give him his way time and again, but Child Life takes very good care of him. During one visit from Child Life, Patrick sat up suddenly and then collapsed in pain. Seeing that he needed to rest a bit more, Megan from Child Life went and got permission for Patrick to use the Vecta machine for the weekend. This 5 foot tall machine is a combination of colored lights, bubbled, fiber optics, a projector and a button pad that lets you control the machine. Patrick loved this toy and it worked well to let him rest when he needed it.

Slowly, Patrick got feeling better and better. He had more interest in toys. He ate chicken soup and kept it down. He put himself to sleep in bed when he was tired. His fevers finally stopped, his blood cultures stayed negative and they stopped the antibiotics.

Then we started making plans to go home. They tried switching him to an oral pain medicine. However, the first one prescribed was a bit much and he fairly quickly threw it up and got really shaky.

That night, they switched him to lortab and he did much better with that. By the next morning, we weren’t using IV pain medicines anymore.

Too bad he also didn’t sleep hardly at all that night. Every time he fell asleep, he’d wake up gagging. So, naturally, he decided not to sleep. I ended up having to send him out to the nurse’s desk to play so that I could get some sleep.

The next morning, I was devastated. It seemed that the surgery had only made him throw up more easily and I felt like everything was out of control. I wanted to go home, but I didn’t know if I could handle that much need for care at home.

Patrick’s surgeon came by and told me that on paper Patrick met all the criteria for discharge and could go home whenever I thought he was ready. But he also told me that between the difficulty of pain control and the frequent nausea and vomiting and difficulty sleeping that he also met enough criteria to stay. I could stay as long as I felt I needed help.

Thank goodness for a good husband who pointed out that we’d all do better at home. And thank goodness for a good friend and mom of another short gut child who helped me muster up the courage to try it at home.

After lunch, I asked for him to be discharged. They worked quick and by 6, we were on our way home.

Patrick was happy to be home but very tired and very sore. He tried playing with his toybox, but ended up putting his toys on the floor and laying down to play. Daddy held him and tried letting him have a drink of water. Patrick immediately threw up all over him. I wondered what I’d gotten us into.

But, that night we gave him his pain meds and put him in bed and he slept through the night. I snuck in for his 2 a.m. dose and otherwise got a much better night’s rest.

The next day, my two goals were to get his pain and his nausea under control. I left his belly to downdrain all day, except when it needed to be closed so he could absorb his pain meds. I also was vigilant in giving the anti-nausea medicine they’d prescribed and I started him on one of his antibiotics for bacterial overgrowth.

Patrick spent most of his day in his own wagon reading books and watching Bob the Builder. But slowly, slowly he got better. He didn’t throw up once.

And that night, again, he slept all night again.

We’ve been home now for 5 days. It’s been an intense week to be Patrick’s mom. He has wanted to be with me every minute, even for naptimes. Trying to keep the right balance with every aspect of his care has my poor little brain constantly working.

But he’s getting better. His belly is still needing to be drained, but only a few times a day. He isn’t nauseous anymore. He’s doing ok with just ibuprofen for pain control during the day, using Lortab just to sleep at night. He’s even asking to eat again. And more than just water and soup.

It’s still a bit too early to say if the surgery was a success. I can say that his outputs have been lower. He’s stooling better.  And, though he threatens, it’s been a while since he threw up.

I’m hoping that as he gets away from the pain medicine and his body heals that we’ll see much more improvement.

Only time will tell.

Patrick is in the hospital trying to recover from surgery. This has been a very hard recovery so far… Patrick has gone through painful things before. But always he was so small that I could just hold him and comfort him all day. Or, he was sedated much longer.Or he was just younger and doing less and thus being kept down was easier.

This stay has been hard. The first day, Patrick was in constant pain. If the nurses didn’t press his pain button every 12 minutes, he couldn’t rest. And then on top of that his mouth was dry and he was queasy. To keep him from pulling the tube out of his nose, they put arm restraints or “no no’s” on him and these are the ultimate in misery for a two-year old. Especially as the crib they have him in isn’t quite wide enough to lay in with arms spread out.

Worst of all, he was scared and for the first 24 hours at least, either Brian or I pretty much just sat next to his bed and held his hand so he’d know he wasn’t alone.

By the end of the second day, his pain was better under control. We had finally convinced the nurses to use the pain button all that they were allowed. Child life brought a tall chair I could sit in next to Patrick’s bed and that afternoon he woke up enough to ask to hold my glasses. I took off his no-no’s and got him a bottle he could play with the lid on. Daddy got him to smile for the first time and he started to talk a little more.

Yesterday, he was supposed to get out of bed and start trying to walk. We decided to start slower than that and started with him laying in my lap and watching movies. That actually went pretty well until he was ready to sleep.

Then, after his nap, he woke and I sat up his bed so he could play. This actually was great for him! He was in much better spirits. However, one major side effect of the pain medicine he’s on is itchiness and it was so bad that he could barely stand it. If his hands were free, he’d sneak in scratching his nose until he made it bleed… even though it was only seconds that he’d have his hands free. His chest and eyes and hair were all just as itchy.

So, in addition to hand holding, my job came to also include rubbing his nose to help the itch.

We tried backing off the pain medication some to reduce the itching, but the result was just that he couldn’t fall asleep because of the pain.

Friends and family came to visit and that helped more than anything else in the day. It was good for him to have other people to talk to and new toys to play with.

But, by bedtime, all of the extra work of the day and the reduced pain medication and the itchiness had him completely worn out. We added one more anti-itch medicine and he finally seemed to settle down – until he started to try to fall asleep and kept being woken. Then he became hysterical and putting on the no nos only made it worse.

In the midst of this, the amazing nurse who had gotten us through two excrutiating nights came back for a third shift. He took a quick look at the situation and decided to help. He told me he thought I needed a good night’s sleep and so did Patrick. And so he made arrangements to be in the room for one-on-one nursing for the night. And finally convinced us that it was ok to leave.

Brian and the nurse gave Patrick a blessing of comfort as he slept, and then we left him and went home. I was asleep as soon as my head hit the pillow.

While we went home to rest, Nurse Dan stayed in the room to make sure that pain medications, anti-itch medicines, antibiotics and the rest were all given as often as possible so that he’d have a good night’s sleep.

Not only that, but he decorated the crib to make it more interesting and sat up and played with Patrick when he was awake.

It was amazing and by morning, Patrick was no longer having fevers and seemed well rested.

This morning, we told the doctors on the pain management service about the itching and they prescribed a drug called Narcan that takes away the itching from narcotic pain meds. It runs all day long along with the pain medicines.

But it took some time to get the orders through the pharmacy.

While we waited, the nursing assistant helped me to give Patrick a sponge bath and get him out of bed onto my lap. He was still really uncomfortable and didn’t move much. But I was determined to get him upright and kept sitting him up a little more and a little more as he watched Disney channel. I finally got brave enough to sit him all the way up for a second, and it was too hard and made him cry, so I told the team when they rounded that he wasn’t ready yet today.

Then the narcan came and right away he seemed to relax. And then, out of the blue, he started saying “up, up” and trying to sit up. So I helped him up to see what he wanted… he wanted me to show him how to raise and lower the crib rail next to us. And he was willing to sit up to do it.

He was really wobbly and kind of stiff needed a lot of support from me to do it, but he spent the next half hour sitting up playing on my lap. It was amazing!

He spotted my cell phone so we called daddy to tell him he was sitting. But, in playing with the phone, Patrick dropped it… and decided to go get it. He started trying to inch off my lap.

So, very slowly I set him down on the floor. He couldn’t quite find his feet. It was like standing on ice. But he stood for nearly a minute with a lot of support.

Then I picked him up and he played another 15 minutes on my lap before his nurse came in and I had her help me get him back into bed.

He was pretty tired by then and started trying to get to sleep. Of course, being in the hospital means that a pump alarmed and other things happened and it wasn’t quite happen. Patrick started to seem to resign himself to staying awake.. So I proposed something kind of big to Patrick.

I asked him if he wanted mommy to rub his hair or he wanted mommy to go bye-bye.

He chose bye-bye. And I went to lunch while he put himself to sleep for a nap.

And that’s where we are right now. It’s been one of the most difficult weeks we’ve experienced with Patrick. I can’t even figure out how it came to be Thursday already.

We’ll see how the weekend goes. Patrick’s got a long way to go before he’s ready to come home and I don’t know if he’ll make it home on Monday. But today he took some huge strides. With blood cultures negative and fevers gone they should be able to stop the antibiotics soon. And if he gets up and moving his bowels should start to do better, too.

Already, though, we are draining 1/4 of the volume from his gut. And that should only get better as he recovers. The color is already improving, a sign of improved health. So it appears that the surgery may have made a difference for him.

Keep those prayers coming! We feel their influence every day.

When we scheduled surgery for Patrick a month before the end of summer, we decided to try to make that remaining summer month as fun as possible. So, sure, we had to do responsible things like starting school and going to therapy and getting work done on the house and cleaning and shopping and that darn line infection that wasted a whole week for us… but whenever possible, we’ve been playing.

Here are a few of the highlights:

We took Papa to the zoo. I’m not sure which was more exciting, the animals or the company.

We went swimming at the area water park. We were the first ones through the doors on a Monday morning.

Patrick wasn’t really a fan of it, until I found a corner where the water was warm and we could sit on the stairs. I taught him to blow bubbles in the water and then it was ok.

We went to a baseball game. Patrick wasn’t so very interested in the baseball, but he liked being outside and he liked watching the other people and he liked the cup of ice water. Most impressively, he wasn’t scared by the crowd cheering.

We tried to have a day at the lake with my family. However, when the rules for our lake of choice prohibited canoing or wading, we went back to grandma and grandpa’s house instead. Grandpa filled his canoes with water and let the cousins play in them until they were all quite blue and exhausted from the effort. Then, Patrick got to eat some zucchini marinated in teriyaki sauce, his new favorite flavor.

We went to the aviary. Patrick was tired and not very impressed by this.

We spent a significant amount of time fighting over him wanting to push the stroller all by himself off of the sidewalks. When we didn’t let him, he threw a major fit, so we put him in his stroller and in retaliation, he took off his brand new shoes and tried to throw them in the pond.

But, we saw a cuckoo bird and he’s learned a cuckoo song in music group. And he recognized the flamingoes from one of his picture books. And there were a couple of places where you could go inside and he tried to pet the birds. So, yeah, he enjoyed the birds some, too.

We had family portraits taken. We bought Patrick his very first suit and we drove an hour and a half up to a ski resort and had some amazing pictures taken. I don’t have them to post here yet, but you can view them here. http://rltphotography.smugmug.com/Family-Sittings/Hoopes-Family-Snowbasin-2011/18948043_f8vx4k#1470664088_ftcqnVz

We went to the State Fair. Patrick was especially excited to see pigs this year, which is funny. And sad, of course, that I didn’t get a picture of him with the pigs. But here’s a cute picture with a goat.

They had a giant slide at the fair, too. And brave daddy took Patrick on it. Perhaps when I’m somewhere with a better internet connection I’ll share the video of it. Patrick was so excited going up the stairs to the slide that he about crawled out of Brian’s arms. He was laughing hysterically at the bottom.

I let him try frozen strawberry lemonade. (Do not try this at home. It is NOT recommended for kids with Short Gut AT ALL.) He liked the experience of something so cold and so sour. He’d make a horrible face, and then come right back for more. Then his face broke out in hives. Won’t do that again.

We went to Brian’s company party at the park. We played a bit on the playground and had some dinner and Brian won a camelbak backpack in a trivia contest that Patrick proudly wore the rest of the evening.

We went with HopeKids to Hollywood Connection for a private party – a rare opportunity to have the place open just for kids like Patrick who might need some extra accomodations. We golfed.

We rode the carousel over and over again.

We roller skated. (But the pictures of that didn’t turn out and it wasn’t all that exciting.)

But Patrick’s favorite ride was their “Crazy Bus” ride. This is a pink bus that goes around in a circle kind of like a fast ferris wheel that seats 30. This was his face the first time it moved.

And this is waiting in line to go again right away.

We took him out for dinner at his favorite japanese steakhouse. Patrick LOVES their onion soup. He ate an entire bowl, and we let him because things weren’t going to get much worse from doing it and we didn’t know how soon he’d feel like eating again.

We visited family. We got him to his preschool classes as often as we could. His speech therapist was so thrilled with his progress that she gave him the rest of the year off to work at home. We went to church and let him play in nursery. We played in the yard. We went for long walks. We went for bike rides. We read extra books. We watched the sun set.

We lived it up!

And then this morning, we kissed him goodbye and sent him away into the hands of a surgeon and GI who we know love him almost as much as we do.

After 3 and a half hours in surgery, his surgeon just came to talk to us and tell us that things went well – just as expected. His intestine was definitely too stretched before and was already squeezing as they finished the procedure.

Hopefully this will mean many more fun days to come.

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.