Author: geekino

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

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

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

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

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

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

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

And I felt completely justified in being miserable.

And I wondered where my miracle was.

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

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

I regained my perspective.

C.S. Lewis wrote:

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

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

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

I have been very tenderly treated.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

 

 

 

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

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

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

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

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

The Flight Out

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

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

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

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

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

The appointment

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

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

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

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

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

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

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

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

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

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

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

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

A trip to the city

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

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

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

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

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

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

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

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

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

Traffic

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

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

We made it home just on time for dinner.

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

Hockey

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

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

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

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

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

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

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

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

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

Whidbey Island

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

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

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

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

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

But he just kept looking at the water.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

A friend of mine has a tradition of a year in review blog. It seemed like a great way to take account of your life once a year, looking forward to things to come.. So, I’ve decided to adopt the tradition myself. Here goes.

January 2010. After several weeks of elevated temps and no appetite, finally requested blood cultures for Patrick. Found that he had a line infection from a rare bacteria called bacillis cereus. Treated the infection with antibiotics then returned home.

A week later, with Brian out of town on business, Patrick came down with RSV. Amazingly, he only spent 1 night in the hospital for this, though he had several visits to Primary Children’s respiratory clinic.

Published my first Short Gut Newsletter.

February 2010

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Attended Paul Cardall’s “Celebration of Life” concert on Valentine’s day, his first performance after receiving his heart transplant and had a good, uplifting cry. Took notes, as he’d promised to perform at a concert we were planning ourselves in the spring.

Bacillis returned. We actually only found it because we’d decided to have follow-up cultures drawn. The line needed to be pulled this time and I threw a little tantrum to get the line pulled and a temporary line put in all in the same day. I don’t think surgery often has parents refuse to sign consent. Changed oral antibiotics, started a long course of IV antibiotics. Returned home with what we thought was a fool-proof treatment plan.

March 2010. All the antibiotics made Patrick grow yeast. Patrick was horribly sick and I was scared to death! But amazingly, with the line out, they were able to kill it. Patrick had to spend a miserable few days with IV’s in hands and feet, so we got Child Life on board, which made it tolerable. In checking for yeast, the radiologist – who never talked to me about Patrick’s history – “discovered” Patrick’s existing partial bowel obstruction. Some very green residents got very scared and tried to take drastic measures. Finally, we talked to Patrick’s surgeon, confirmed that it was the same problem we already knew about and decided not to take any action. After a few days wasted treating an old problem like a new one, we got to go home.

The same surgeon miraculously got a double lumen broviac line into Patrick’s tiny veins and we were able to start using ethanol locks to keep infections out of the line.

April 2010. Really got serious about planning Patrick’s Hope Concert. Pushed the date back to the end of March to allow more time to plan. Found a venue. Bought insurance. Started going door to door to local businesses looking for donations for the concert and the silent auction.

Donations started pouring in from all over and we were overwhelmed.

Took Patrick for a checkup in Seattle.. all by myself for the very first time. This was also the first checkup we went to without an admission in Seattle. Got a flat tire on the way home and returned to a house with the water shut off due to plumbing problems.  However, we were at home.. for a whole month.. The first in so many that we didn’t mind.

Signed up an occupational therapist. That makes 5 therapists and 10 visits a month.

May 2010. Patrick’s yeast grew back, again! He got so sick that his platelets dropped. This was another scary admission with low blood counts, transfusion, fluid overload bad enough to require oxygen, an accidental extubation in surgery, and a post-op fever.

We were there long enough to do the first of 3 TV news interviews while in the hospital and the 2nd on our way home, the day of Patrick’s discharge. Patrick was famous. Donations and offers of help came pouring in.

Patrick’s Hope Concert was a huge success! Attendance was lower than we’d hoped. Turned out that when we changed days, we picked a really bad one.. but still, hundreds of people came and the event raised enough money to have been worth the effort. Our families and friends came together in amazing ways to put together a spectacular evening. Every auction item sold. Brian got to work with the sound crew and performers backstage. Patrick got to go through a whole day without a nap and stay up well past his bedtime. We were deeply touched, extremely entertained, and thoroughly exhausted.

June 2010. In June, we rested.

July 2010. Took Patrick on his first vacation, despite 3 line breaks in 3 days, including one in the middle of Idaho. I did a line repair myself because none of the ER staff knew how. Patrick did pretty well with his first road trip.

We flew to Seattle for another checkup, this time taking Brian so we could have even more vacation fun. We celebrated the one-year anniversary of Patrick’s cardiac arrest by wowing his transplant team with an almost overweight and overwhelmingly healthy child. Then we had pizza at a park on the beach with friends, then took a walk in the sand which made Patrick so happy he cheered out loud.

August 2010. Patrick got a cold and pinkeye and an ear infection. Blood cultures said he also had a very serious line infection. We aren’t sure we believe it. The short hospital stay resulted in a clotted line we ended up trying to unclot on the night of Brian’s 30th birthday. This line eventually had to be pulled, and a new one was placed in outpatient surgery.

Got a zoo pass that I was very grateful for.

Published my 2nd newsletter. Moved the support group onto Facebook and all of a sudden had a lot of new friends.

September 2010. Got Patrick a brace to help with muscle tone issues in his foot. He finally started trying to walk. Got the go-ahead to start trying feeding therapy.

October 2010. Had a follow-up visit with Patrick’s rehabilitation doctor who confirmed that Patrick has abnormal muscle tone on his right side, probably a manifestation of some small brain damage done by his cardiac arrest, but said that we were doing all the right things. Changed speech therapists to one who could also do feeding therapy. She seemed tough, but better at diagnosing causes for Patrick’s speech delays.

Also saw an allergist and confirmed that Patrick has a lot of food allergies.

Patrick learned to walk by his 2nd birthday.

We wondered how we had such a healthy child at age 2. Everyone told us he’d be on death’s door if not gone by then.

November 2010. Patrick started walking everywhere. I turned 31. Quit feeding therapy because Patrick started to have uncontrolled bacterial overgrowth and adding new foods was only making things worse. Kept the same speech therapist, as we actually started to make some real progress.

December 2010. After months of uncertainty, it became clear that impending changes at Brian’s work were really going to happen. Although the job was stable, certain aspects were unclear or destined to change in ways that would mean big changes in Patrick’s medical care. Decided he’d take a job offer in a sister company to keep our current benefits package and more stability. Had to keep this secret for most of the month. He’ll start transitioning into this new job in January.

Patrick’s stomach upset only got worse. Tried a bunch of different antibiotics. His eyes started to look a bit yellow. Labs confirm problems with his liver, so we stopped giving lipids in the hopes things will turn around. My instinct says the two problems are related.

Still, had a very sentimental holiday season with a healthier-than-he-should-ever-be little boy. Enjoyed every minute of the magic of Patrick’s 3rd Christmas.

By January 1, 2012: I will know why Patrick’s gut has been so sick lately, and hopefully have found a solution. I will have enjoyed my time my little boy and with my husband – wasting much less of it with anxiety. I will have stopped saying “someday I’ll exercise again.” I’ll have found some way to be active. I will enjoy my callings not only while I am doing them, but while I am planning to do them as well. I will stop trying to control everything. I will ask for help and trust my helpers more. I will continue to entrust my future to my Heavenly Father.

2010 was an eventful year. We were blessed to spend so much of it at home, doing the things that healthy families do. 2011 will almost certainly bring big things. Change is almost inevitable in our house. I hope to be up to the challenge.