Author: geekino

I should be asleep. It’s bedtime. Everyone else in my house is asleep. But my mind doesn’t want to rest right now. It is running from one topic to another to another and I finally decided that rather than hiding from blogging what’s on my mind, I’m going to dump it all out here in one cathartic rant.

My baby is turning three on Monday.

And turning 3 means that this week is his last week of early intervention. Today the last therapist came to our house that they will ever send. Tomorrow will be his last structured play class and then Friday will be the last of Musikgarten. We’re taking gifts to his classmates tomorrow and the Friday.

It is bittersweet to be saying goodbye to therapists who have become friends and allies, who have gotten Patrick from barely rolling over to an active, happy little boy who 95% of people don’t even know struggles as much as he does. It is scary to feel like we’re starting over.

It’s really a positive step forward. Last week Patrick and I went and spent the morning in his preschool class. It was amazing! His teacher is so kind and so knowledgeable! She is determined to learn how to take good care of him. And Patrick’s face just lit up with excitement as he got to sit with peers and listen to stories and sing songs and do crafts.

He is going to thrive in preschool!

So long as we can keep him healthy. And that is the one scariest part for me. Patrick had follow-ups with 3 of his specialists last week. And so I spent the first part of last week drafting an “Emergency Care Plan” for his doctors to sign off on that would summarize every scary short-gut related emergency that Patrick could have and how the school would need to respond to it. It was 10 pages long. It could have been longer.

And I made a list of everything that I do for Patrick during the time that he is in school so that the doctors can write orders for the school nurses (There are two on site at all times at this school) can do those things for him. That was 4 pages long. I think my assembled notes and new “Care Notebook” are over two dozen pages.

I have one meeting tomorrow to try to cover it all in. And all the pressure of worrying about setting appropriate IEP goals, too.

But mostly, I’ve been able to hide from that. We’ve had enough else going on.

For example, on Thursday morning, I was rushing to get Patrick to an appointment with his surgeon. And, in the blinding, rising morning sun, another driver didn’t see me. We were both going under 5 mph and so the damage is minimal and the other driver does body work for a living and will repair it. But it’s one more thing.

And on Monday morning, while treating diaper rash, I used some stoma powder.. only to have Patrick’s eyes swell up and him start to sneeze. And then while I was looking for what could possibly have caused that reaction found several articles linking severe cashew allergy with pectin allergy. When we saw the allergist for Patrick’s flu shot (Which took 3.5 hours to get!) I showed him an article and asked about it and he said that there was no standardized way for him to test for a pectin allergy.. but that I could probably safely assume that Patrick is at least allergic to inhaling pectin powder. So now I’ve added pectin to the list of possible allergens for Patrick. And have virtually no idea what that will mean.. except no stoma powder. Which I can live with. Until after transplant when he needs a stoma.

And then, because of a bunch of other crazy circumstances, naptime got all thrown off yesterday so he slept into his TPN break. And when he woke up, he was screaming. But I calmed him down and thought things were ok. Until he started to lay on the living room floor instead of playing and whimpering. Thats never a good sign so I checked his blood sugar and it was on the low end of normal. So I gave him some formula.. and I called Brian and we decided to start his TPN early. And then his blood sugar had a quick spike, and then he was ok.

Until today when I got him up from his nap… and he was happy and seemed ok for half an hour, when he got really clumsy and was falling down a lot.. So I put him in the living room chair and ran to get his glucometer.. and walked back into the room to see him just topple head first out of the chair.. and then start screaming. He was ok. Couldn’t even find a goose egg. This time his blood sugar was low, but just barely out of the normal range. So I gave him more formula to drink and some bunny cookies and called his dietician.. Who wasn’t all that concerned, except that she said that a rapid drop in blood sugar could cause problems and to watch more closely. And she told me to start adding corn starch to formula and give it to him BEFORE he gets lethargic as his TPN tapers off. He’s got a mild allergy to corn, though, so I don’t know about that. But at least I’ll make sure he gets some formula and some cookies earlier…

And by the time I got off the phone, his blood sugar was back in the normal range.. But I didn’t feel any better because I don’t know why this is happening every day. It doesn’t seem exactly safe, even though i can stabilize him quickly and safely at home so far.

They’ll do a bunch of labwork on Monday. At least, I hope they will. So that hopefully we can get some answers. And I just realized that Monday is also Halloween and his birthday… and that will be interesting logistics. But we’ll make it work.

And, yeah, speaking of that… Monday is Halloween and his birthday! I have his Halloween costume. And I have some stickers I can trade him for the candy he’ll get trick or treating. And I have an undecorated hat box for a birthday cake, but can’t quite put my finger on how to decorate it this year. And some favors to go inside the box that may or may not correlate to the theme.

And I have a birthday video that I was supposed to get in the mail no later than today… except I didn’t.

Because on top of all of this, Brian was up sick all last night.. with a stomach bug. And today he has a fever. And that viral combination is a Short Gut family’s least favorite as it can mean bit gut complications and an admission if a fever appears. I was sick this morning, too, but it passed quickly, at least most of it. But my poor husband is miserable.

And I’m just praying Patrick doesn’t catch it. Because, if he does, then my attempts to plan for his birthday will have to be relocated to the hospital. Of course, maybe he’s already got it and that would explain his slow motility and crazy afternoon behavior this week. Or maybe it’s nothing. It needs to be nothing. Because Patrick deserves another birthday at home.. even if I didn’t plan a party.

But just in case, I’d better come up with a plan for and finish the cake tomorrow.

And I need to schedule 2 doctor’s appointments. And fill a prescription or two. And arrange to have my car fixed. And do my visiting teaching.

Can you see why I can’t focus? And why tonight it’s hard to sleep?

But I’d better sleep.

Patrick gets up at 6 a.m. That will be great for school. It’s not so great now.

I have stories of our funner adventures last week. However, before the impressions of this week leave me, I want to get them written down.

Monday afternoon Seattle Children’s gave me the go-ahead to reactivate Patrick on the tranplant list. All they needed was Patrick’s height and weight. So, Tuesday I took him up to the hospital to get him weighed and measured and then brought him home for a nap.

We’d been home for half an hour when Patrick woke up just sobbing. My first thought was that his stomach was hurting, but draining his belly didn’t help, nor did changing his diaper.

Finally, his temperature started to rise slowly and I started to think infection, either in his central line as a complication from the surgery. After about an hour, his fever hit 101.5 and Patrick was inconsolable. So, off to the E.R. we went.

Patrick was so hysterical, and with his history of high, high fevers causing chills and convulsions – I didn’t think I could drive him in as he was. So I gave him some ibuprofen while I packed the essentials. By the time we got to the car and I told him we were going to the hospital, he was settled down.

Still, even with ibuprofen in his system, he was running a fever of 101.4 when they checked it in triage. They gave him some Tylenol, too, and showed us to a room.

The E.R. was crazy busy this time. The doctor and nurse came in right away and soon they’d drawn blood cultures and some other tests to look for infection. Then, in super slow E.R. time we waited for lab results and for a consulation from surgery. Surgery recommended x-rays, which showed that there were no problems with Patrick’s belly.

And then, at last, with all those tests done, 3 hours later the doctor came to say that all of the immediate results didn’t show anything wrong, except for a low white blood cell count, which sometimes comes with a virus. Well, that and his heart rate was really high and he needed two fever reducers to keep his temperature down.

They decided to give Patrick a dose of ceftriaxone, a broad spectrum antibiotic that isn’t as strong as he usually gets for line infection, but that lasts 24 hours. (His heart rate immediately improved.) And then, they sent us home with instructions to follow up with Patrick’s normal GI first thing in the morning.

I didn’t really feel like a virus was a good explanation, but the doctor seemed pretty sure of the plan and it didn’t seem like we were getting much further were we were. At 5 hours after we arrived in the E.R. with a fever, they sent us home.. for the first time ever.

We put Patrick right to bed, but stayed up getting ready to go back to the hospital if he got sick again. Brian cleaned up the kitchen and worked. I did laundry and packed bags.

The phone rang the next morning at 5:50 a.m.

Patrick’s cultures had turned positive very quickly. And, although they can’t tell the species of the bacteria immediately, they could tell from the shape that the bacteria were gram-negative rods, the shape of some of the most dangerous and drug-resistant bacteria. They told us to come back right away.

So, we packed our bags and less than 12 hours after we left the hospital, we were back.

Still, he wasn’t as sick. His fevers were only low-grade by morning, even as the medicines for them wore off.

Over the next several hours they unclotted a line, drew blood cultures, and gave Patrick three very heavy-duty antibiotics.

And all the time I was just wondering if we’d put Patrick at greater risk by taking him home for the night. We’d certainly rested better, but I was afraid that being 12 hours later in starting the more aggressive treatment might mean that Patrick was really at risk.

Finally, we made it to a room and things began to calm down. We spent actually a very quiet couple of days. Patrick slept well the first night and just continued to gradually get better. It seemed the worst had passed in the first night.

This morning, Patrick’s blood cultures had been negative for 48 hours. They also finally were able to identify the bacteria. It was a strain of Klebseilla, a very dangerous and drug resistent bacteria. It was resistent to all of the antibiotics that are typically used to treat line infections.

However, it was sensitive to the one less typical antibiotic given the very first night in the hospital. That unconventional treatment plan was exactly what Patrick needed.

I’m sharing this story because it illustrates an important truth.

Heavenly Father knows the details – even the most microscopic ones. He is in charge. And He can inspire and guide doctors, nurses, and parents to do what’s right. He certainly was watching out for our little boy this week. The fact is that the ER doctor felt impressed to recommend an unconventional plan. The other doctors on call accepted that plan, even though it was out of the ordinary.  And we were given us peace of mind to trust the doctors and ourselves. That all of that was what was best for Patrick is surely no coincidence.

The result? One of the calmest line infection hospital stays we have ever experienced. Oh – and his transplant listing will be reactivated on Monday once the blood tests have had 3 full days to be finalized.

Our Heavenly Father really does love and watch over every important detail.

“Are not two sparrows sold for a farthing? and one of them shall not fall on the ground without your Father.

“But the very hairs of your head are all numbered.

“Fear ye not, therefore, ye are of more value than many sparrows.” Matthew 10:29-31

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….