Patrick Hoopes

After a nice little day vacationing in Seattle, the next day was a little more business.

Well, eventually it came to be business. We started out with more fun. I met another mom through our Facebook support group. Her youngest daughter also has Short Gut and is a patient of the intestinal rehab/transplant clinic at Seattle Children’s. Her older daughter is Patrick’s age. So, since she needed to come in for an appointment with homecare that same day, we decided to bring families along and meet.

We went to Pike’s market together, since it wasn’t too far from where they’d ferry in. Ok, so the environment was maybe a bit hectic for two toddlers and a baby, but as grownups, we really enjoyed the chance to just BE! It’s always so comforting to be with another family who is used to IV lines and g-tubes. It’s nice to eat with someone who doesn’t even bat an eye at the fact that your child prefers playing with a straw and sipping bottled water to eating the treats that everyone else has.

It was just.. nice. And far too short. I’ll have to plan better next time we’re out there so the kids can play a bit more.

After sharing some piroshkies, we all headed back to our cars and drove to the hospital.

Our appointment this time was with Dr. Dick, a transplant surgeon whom we had never met before. We were supposed to see Dr. Horslen, but he had a patient who needed an emergency appoinment and we decided to trade our appointment since our questions were really more in the surgical field, anyway.

However, as seems to often happen with the surgeons, Dr. Dick was called away just as we arrived and so we waited for him. And waited, and waited.

Waiting in a small exam room with a toddler is hard work!

Finally, the usual steady stream of professionals started to come in. We finally got to meet Patrick’s new transplant coordinator in person. (We talk on the phone all the time, but hadn’t yet met.)

His dietician, as always, was thrilled with his progress! Few children with Short Bowel Syndrome, especially children who rely entirely on TPN for nutrition, are in the 50th percentile for weight. Because I’ve been worried about the delicate balance of liver health and lipids (IV fats), I asked her to review his fatty acid profile. I’ve been worried that by only giving lipids 2 days a week that Patrick would start to develop deficiencies that might affect his brain development. However, after looking at his lab results, she told us that his profile looked like that of a patient receiving Omegaven. This is kind of the gold-level standard for treating TPN-associated liver disease.. and so it’s very good news indeed.

Finally, Dr. Dick had reviewed the radiology we brought (we brought copies of the images I’ve shared on this blog previously) and came into the room to talk to us about it.

We kind of introduced Patrick and he looked and his current health and overall progress and was quite pleased.

And then we asked the million dollar question – the one we’ve been asking every doctor for the past year. Is it still ok for Patrick’s intestine to be horribly distended and for us to be draining a liter or even two of bile and replacing it for him every day.

Dr. Dick looked a bit like a deer in the headlights when we asked this question.

We discussed things a bit. We told him that we’re pleased with how stable Patrick is and don’t want to rock the boat, but that we also don’t want to compromise his remaining intestine being used for transplant.

Then he decided to go get a second opinion. He went to find Dr. Javid, a general surgeon who works on a lot of the intestinal cases. And we waited, and waited, and worried the longer they were gone. Dr. Javid is the surgeon who placed a line in Seattle a few Christmases ago when Patrick aspirated during surgery because of stasis. He is familiar with his motility problems.

Finally they came back together.

They explained that they had reviewed the films, along with Dr. Horslen, and had some recommendations.

The mentioned a procedure called a plication. Basically, it would mean putting a row of staples down the center of Patrick’s duodenum… narrowing it to a more normal size and allowing the other half to shrink away.

In theory, it sounds like a solution that might work, but it comes with a LOT of risks and we are nervous about the idea. Honestly, I don’t know what route to take right now.

On the one hand, reducing the size of that organ would probably slow down the hypersecretion and help Patrick to not need liters and liters of IV fluid to stay hydrated. It certainly would be nice to not have to worry about whether or not drainage tubes are working so he doesn’t wake up vomiting in the middle of the night.

However, the duodenum is what is distended. And the duodenum is not a part of the small bowel transplant package. It’s it’s own organ. It does it’s own things. And, while it absorbs very little, it plays a major role in digestion and absorption that can’t be replaced if it was gone.

We asked the transplants surgeon if they were comfortable with the risk of us making changes to this crucial organ. He replied that it may already be too unhealthy to be used for transplant. YOUCH! That is a really tough pill to swallow.. especially as things got to this point precisely because we were trying to preserve the duodenum.

And then, of course, there are the risks that come with major abdominal surgery. Simply getting through the scar tissue in his abdomen would take at least an hours. And there are the risks to follow the procedure: staples in the intestine leaking and causing ulcers or infection, loss of bowel motility or absorption (that fish oil is being absorbed SOMEWHERE), trauma to or loss of any portion of the remaining intestine.

All in all, it’s a pretty risky surgery that may or may not fix the problem long term. We could do this and find that the distension and lack of motility are caused by something completely different and end up right back here in another year.

Not an easy choice to make for a boy who 95% of the time seems completely happy and healthy despite the fact that his is critically ill.

I’m going to jump ahead a bit to after our return home when we discussed these options with Dr. Jackson, Patrick’s main GI. He suggested trying a STEP procedure instead so that at least we wouldn’t lose any bowel surface area. Not sure if that would decrease secretions, but it might help with the stasis and the motility… which would both help reduce bacterial overgrowth and translocation problems. He also said, though, “But I don’t want to rock that boat”.. meaning he doesn’t really want to mess with Patrick’s miraculous and unlikely good health.

All of the doctors agreed that they needed a conference. Seattle’s GI and white-haired transplant and general surgeons.. as well as Patrick’s GI and surgeon here at home. They need to talk about all the options and the possible outcomes and the risks and come to a concensus on their recommendation.

And then we’ll have to choose what to do next.

We also discussed going ahead with an endoscopy after all.. just in case the barium enema lied. (Did I tell you we did a barium enema in preparation for the bowel dilation procedure only to find no evidence of a narrowing that they could dilate.. and so we dropped the procedure?) And maybe doing some more specific tests to try to treat and manage bacterial overgrowth.

But for now, we’re just letting things be and waiting for the doctors to talk.

We left the clinic 3 hours after we arrived. Patrick was exhausted and fell asleep before we’d driven a mile.

Thankfully, we had a good evening distraction. We drove up to Everett to go to dinner with Lindy and Kelly, our wonderful friends who so often take us in. Lindy was due to have her baby well, any minute it seemed.. and so we kept the visit brief so she could rest. Just dinner and a trip to the train station.

 

That night, Patrick decided that he was done sleeping in the hotel room crib. He cried every time I tried to put him down and it was well past midnight before any of us slept. The next morning, he was furious to find I’d deceived him and refused any and all offers of naptime.

So, after wasting half the day in that effort, we packed and moved out of our suite. Instead we drove and drove trying to get a nap, then finally gave up when it was time to meet one of Brian’s business colleagues for lunch.

They gave Patrick a cup of water and a straw that he could blow bubbles in it with, so he didn’t mind being awake.

Our friend recommended a stop at Alki beach on our way out of town. Patrick loves walking in the surf, so we decided that since he wasn’t sleeping, that would be a good place to kill the rest of the afternoon. Of course, that’s when he napped.

So, we just drove past Alki beach and drove around West Seattle until time to prepare TPN and head to the airport.

It was a strange trip – a wonderful vacation, though very sleep deprived, and with many more questions raised by the transplant team than solutions given.

But it gave me a goal. One of these days, I’d love to go to Seattle and rent a beach house on Alki beach and just take a vacation. No clinic visits. Just the Seattle skyline and the Sound. Maybe when Patrick’s all grown up.

You know you’re a parent to a child with Short Bowel Syndrome when your vacations revolve around doctor’s appointments. At the end of June, we took Patrick for his semiannual transplant checkup in Seattle. As the friend we usually stay with was both very pregnant and in the middle of moving, we opted to stay in a hotel near the hospital this trip and make a little vacation out of the trip.

Amazingly, this plan of ours actually worked.

We decided on a late afternoon flight this trip, which offered us the rare opportunity to go through security without Patrick’s TPN running. That meant he could go through the metal detectors without needing to be patted down (which is good, since we forgot our stroller). This made the security process seem SO much quicker!

We arrived at the hotel in the evening and checked it to find that the hotel had decided to upgrade our room after I called to verify that my room had both a fridge and a crib for Patrick. Even though we were paying their lowest possible price, they upgraded us to a suite. Imagine our surprise when we walked into THIS room!

Patrick’s favorite feature were the large windows overlooking the street. He spent most of his time in the room watching the cars.

That first night was a late night. After a late run looking for ice cream (and settling for frozen yogurt), we got back to the room to realize I’d forgotten to pack alcohol wipes as well. So Brian had to make a run to Walmar for stroller and alcohol wipes, while I stayed behind to try to get Patrick to settle down to sleep in the room.

The next morning started out really early. Patrick was up with the sun at 6 a.m. But despite being sleepy, we got to get out and have a lot of fun.

First, we went to the zoo. Patrick was a bit confused that there was a different zoo than the one we know at home. But it was great to let him see some different animals! Of course there were the favorites, the elephants and monkeys and tigers and giraffes. But he was also excited to see some different animals, too. Bears and penguins are both animals he knows from books but has never seen in person. One thing was constant, though.. He found a curious orangutan to play with.

We heard one of the zoo docents explaining that this orangutan has an obsession with looking in people’s ears and Patrick was more than happy to oblige.

We ended our visit by going to the farm section of the zoo. We thought this would be a big hit, as it had a petting zoo. However, the petting portion was closed and Patrick was starting to feel the effects of his late night and early morning.

So, we went and got some lunch. (Yummy gourmet burgers). Then, we headed back to the hotel and all crashed for a nice long nap. During our nap, his TPN shipment was delivered to the room and I ended up spending half of the afternoon discovering that one of the boxes hadn’t made it from the front desk to our room.

After getting that all squared away, we headed out for more fun. We drove into downtown Seattle to wander and get some dinner. We started near the Space Needle and then walked a ways to the Palace Kitchen, a Zagat rated restaurant. They looked at us a little funny for walking in with a toddler. But Patrick did GREAT there! And it was by far his favorite meal stop of the trip.

I decided to splurge, since Seattle is famous for seafood, and order some Sockeye (salmon). Patrick was asking for a taste, so I gave him some and he LOVED it! I could barely keep up with him! This kid has good taste, what can I say?

After dinner, we took the monorail to get back to our car. Patrick was so excited when we told him we were going to ride the train. (“Koo koo!”, as he called it.) And once we were in motion, the smile didn’t leave his face!

By far, this was our most successful vacation day in Seattle yet.

Next post: Our checkup at Seattle Children’s.

I guess I succeeded in wearing Patrick out yesterday. He’s sleeping in, so I’m going to sneak in a post and some pictures.

Once a year, our early intervention provider holds a Family Fun Day at Wheeler Farm. They invite families from all of their locations, spanning several cities. And so far, every year, we’ve been out of town when this rolled around. Yesterday, we got our first chance to attend.

Festivities officially began at 10 a.m., which meant we rushed out the door early to finish our errands and get there on time. We checked in and went straight for what we knew would be the longest line later – face painting.

Amazing what these artists can do with a sponge and a couple of brush strokes. This masterpiece took less than a minute on a kid who kept wiggling away because.. well, what were we doing to his face? But once he saw himself in the mirror, he grinned from ear to ear.

The next stop was the wagon ride. I knew that Patrick’s love of tractors and wagons guaranteed this would be a fun adventure. We arrived a bit early for that and got to go out on the first ride of the day. Patrick sat right up front where he could see the tractor pulling us really well.

They started the engine, and he grinned… We started to move and a smile of pure joy spread across his face. THIS was the best thing we could have done all day!

After that little ride, we stayed in the farm to visit the animals. We went first to the goats. Patrick loves how friendly they are and I’ve been promising him goats at a petting zoo for weeks. He walked right up to a little one and gave it a kiss. Then we visited and petted them all.

We saw other animals, too, as we walked back towards the carnival. There was a cow napping against a fence and letting kids pet her, so I took Patrick over to have a try. Just as I pulled out my camera, though, he spotted a goose and started saying “Duck, Duck, Duck” and took off.

I was a little worried, as geese tend to bite, but this one was friendly enough. She was sure Patrick was there to feed her and kept begging. After they explored each other a bit, I led Patrick away.

But the goose didn’t believe that we didn’t have food and followed us honking for the next several minutes.

Back at the carnival, we grabbed a quick drink of water, then went to play some of the little games they had set up. We sat in on a music group singing some of Patrick’s favorite songs. Then headed over to blow bubbles. He played games with a parachute, bowled for pop bottles, sat in a little soccer goal (just because another boy had)… and then, as we had other places to be and were getting thirsty and tired, headed out on our way.

It was a thoroughly fun morning.

I’m going to take a minute for a serious note. Here in Utah, a winter with great snowpack combined with a cold, late, snowy spring has waters running higher than usual in all our rivers. One lake rose 8 feet just last week. There’s a little river that runs through Wheeler Farm that was quite scary to look yesterday. It was overflowing it’s borders and flowing so swiftly it could have easily carried someone away. Over and over again we heard the caution “Keep your kids away from the river.” At one point, the family in front of us was frantically searching for a toddler who’d wandered off and I couldn’t help but worry that the worst had happened. (Thankfully, he’d just gone for an extra turn in the bounce house.)

There have been several drownings of small children in the state this month. And because of them, I’ve been getting a lot of questions about organ donation. So forgive me for taking a serious moment to address these questions.

First of all, yes, drowning victims are often organ donors. In the case of a child, it is the parent’s choice whether or not to donate organs. I will never forget watching a family I met during Patrick’s PICU stay making the decision to turn off life support and donate her organs.

Their consolation was knowing that, in a way, she’d live on.. and that in losing her life, she’d helped to save others.

One organ donor can save 8 lives.

Yes, these children are the right age to be donors for Patrick. No, that doesn’t make us feel any better about their deaths. We’d prefer for him to stay healthy enough to put off needing his transplant a while longer. And we’d prefer to these kids to stay with their families, too. The death of a child is never anything but tragic.

Yes, distance does make a difference in organ matching, so a match listed and living in the same state is given first preference. But there is a lot more taken into consideration. Matches are based on blood type, size, distance, and degree of illness. So, those living closest get first priority, but if a high priority match isnt’ found in the state, then the offer will go to the rest of the country… sickest patients first.

Remember that Patrick’s transplant won’t happen in Utah. So proximity doesn’t come into play in our case. Both Patrick and donor organs will have to travel to Washington. We live about as far from our transplant center as is allowed.

Finally, many of you have asked if all these tragic drownings mean that the odds of Patrick’s transplant happening improve. Well, in a way, yes. They mean more transplants are happening. And that means that the list is getting shorter. However, that doesn’t change the fact that Patrick is a very difficult match for a very rare organ transplant.

And ultimately, it doesn’t change the fact that this is all in God’s hands. Only He decides when a child should come home to him or when their life will be miraculously extended. He guides grieving parents and doctors and organ allocation people. He orchestrates miracles. And He heals hearts when a miraculous physical recovery is not in His plans.

Sometimes seeing Patrick sick and suffering makes us impatient for the transplant to come. But most of the time, we are content to wait on the Lord’s timing. We have been very blessed with a miraculously healthy boy, despite his severe illness and despite all the work it takes from me to keep him that way.

Hopefully that answers some of your questions.

And now, seriousness aside, here is one more seriously cute picture. This is what Patrick looked like by the time we were headed home yesterday.

three blog posts all composed in my mind. This week, I have fallen into bed exhausted so many times that just taking the time to write this quick update seems like a huge sacrifice. But I really do need to get an update out.

So here are a few discoveries we’ve made in the past week.

Discovery 1: We won’t be dilating Patrick’s bowel after all.

…… in fact, we won’t be doing anything about the dilation and narrowing. Why? Well, Patrick’s surgeon asked that we have a barium enema done to get a better picture of the narrowing before putting Patrick through an endoscopy. In the images I posted, the stomach got in the way of the image. So, they hoped that by putting the contrast in from the other end, they’d be able to get a better picture.

And they at least got a different picture. There was no evidence of a narrowing. Just a skinny colon and a fat duodenum. The best guess is that the small intestine is just so big that sometimes the weight of it pinches things off so they don’t move. So, good news that there may not be a stricture. We’re glad he won’t need a risky procedure. And it’s a relief to not have to worry about going from a few dirty diapers a day to 10 or 20 or more.

However, it’s kind of disappointing to have no other recourse. Surgery is far, far to risky and uncomfortable to be worth it. And medications are risky, too. So, for now, we’ll just hold the course. We’ll take the imaging to Seattle Children’s when we go next week and get a second opinion on the problem. However, as Dr. Horslen in Seattle has been talking to Dr. Jackson all along about this, I don’t know that anything will change.

Quite simply, this is a problem that transplant would hopefully fix. And we have to decide if trying for a temporary solution is worth what it would cost Patrick.

Discovery 2: Patrick loves the garden hose. His current favorite job is watering the flowers. We had a miraculous Saturday a couple of weeks ago where I got to plant all my gardens. Now, I’m hand watering them at least once a day. And Patrick often comes along to help. He doesn’t think I do it right and will take the hose and push me away saying “nya nya nya”. Then, he’ll soak the garden and himself.

Discovery 3: Labs don’t always give clear answers. I got lab results yesterday about Patrick’s liver. They confuse me. The good news is that his liver enzymes are back to normal for the first time since last fall. Careful management of his lipids has gotten us there. However, his clotting factors, a symptom of liver problems, are getting worse. This means he’ll bleed a lot more easily. And, well, I don’t know quite what to make of that. We’ll get a second opinion on that, too.

Discovery 4: Even toddlers can have car lust. Ok, well, we all knew that Patrick’s a car fanatic. But yesterday I combined two favorite things… cars, and the hose. We washed the cars yesterday. While Patrick’s tubes were off, I pulled them up on the lawn, then filled a bucket, and handed Patrick a rag. He LOVED it. He walked around the cars washing from time to time, admiring most of the time. The hose was a pretty fun element, especially for putting on the cars. But the cars parked together on the lawn was irresistable.

Discovery 5: It takes 3 days for Patrick to clear barium contrast from his system. It’s very thick stuff. That was a challenging couple of days. We’ll leave it at that. Can’t help but wonder what that says about his motility. We’ll talk about that with the docs, too.

There’s a lot more I’d like to share.. but I think I’m going to leave these discoveries for now and hopefully get another blog or two soon with the other many discoveries I’d like to share.

“My grace is sufficient for thee: for my strength is made perfect in weakness.”  – 2 Corinthians 12:9

 

Patrick reading in his chair. He spends several hours a day here.

Today, I took Patrick to the rehabilitation clinic for a round of Botox shots. No, I’m not a crazy mother trying to improve upon the already near perfect cuteness of her child. This is actually a pretty well accepted medical treatment for dystonia, the muscle spasms that sometimes make walking difficult for Patrick.

The premise is simple. Because of the damage done to Patrick’s brain when his heart stopped, sometimes the signal to his right leg gets confused and instead of moving normally when he walks, the muscles overly contract and his foot turns inward, keeping his heel from lowering as he walks. The faster he tries to go or the more tired he is, the worse the problem is, and the more often he falls.

Yes, I’d hoped to have this done under sedation along with his bowel dilation procedure. But planning for the latter is taking forever and I didn’t want to delay the Botox any further. So, we opted to do the shots without any sedation in clinic.

So, today his doctor injected small doses of Botox into the muscles that were the most tense in his leg. The idea is that these strong muscles will be weakened, allowing the other, weaker muscles to be developed. The Botox will take a week to take effect, and then we’ll start some intensive physical therapy to work with the weaker muscles. The effects will last for about 3 months before they begin to wear off. We hope that at the end of that time, that the weaker muscles in his leg will be strong enough to fight against the dystonia. If not, then we can repeat the therapy.

It was an interesting process. First, his doctor stretched his leg, feeling for tightness there. Wherever a muscle was tight, she marked it with a pen. Then, she told her assistant what dosage of Botox she wanted, and they called down to get it from the pharmacy. It took about 20 minutes for it to be prepared, and then they came back to do the treatment.

I brought along Patrick’s doll, Tubes, to help explain to him what would happen. I asked Doctor Gooch to “give” the Tubes Botox shots so that Patrick would know what to expect. She was really cute pretending to give shots. She was so tickled with the idea that she instructed her assistant to go out and order two dolls just for that purpose in clinic.

After the explanation, we had him lay on his belly so she could reach the back of his leg. He was worried, but trusting, as I knelt face to face with him to offer comfort. They used a special machine that attached to the needle of the syringe to read the electronic signals in Patrick’s leg. I assume that this system helped them to confirm that the Botox was given in a muscle.

Meet “Tubes” (pronounced “Boo), a doll that I added a g-tube and broviac line to to give Patrick someone to relate to, especially when talking about medical things.

I was SO proud of how well Patrick did with this. He worried when we asked him to lay on his belly, and then started to cry when he recognized the feeling of alcohol wipes preparing the skin. They used a “cold spray” to numb his leg, and then put in the needle. He got two shots in the back of his leg: one in the hamstring, one in the calf.. then one more in the muscle in front of his shin. Although he cried the whole time, he tried his best to hold still. And as soon as the needles were put away and we said he was done, he calmed down, accepted hugs, dried his tears, and even signed “thank you” to the doctor when they gave him a matchbox car as a prize.

And then, because that kind of good behavior deserves a reward, we called Brian and he left work a little early to meet us at the zoo.

Boy, was Patrick in a fun zoo mood today! He loved the new replica dinosaurs all over the zoo. He ran around happily visiting all of his favorite animals and places. And, as icing on the cake, we let him ride the carousel for the first time. You should have seen his face when the carousel started to move! He was so excited that we were on our third rotation before he noticed he was sitting on an elephant.

Patrick’s first carousel ride. I don’t think he quit smiling until I told him he had to get off the elephant.

I’m proud to say that at the end of the day, I think he remembered the fun trip to the zoo much more than shots in his leg.

We’ll just hope that the next month of physical therapy will go as smoothly.

You know the kind of day where you went to bed not feeling wonderful and ended up spending half the night up sick, and so did your husband, so neither of you really got any rest so that by morning you were exhausted and dehydrated, and you really should have stayed in bed,

except that you have this toddler who wakes up at seven and yells “Mamma, Dadda” until one of you comes and gets him, and then he needs a bath and he needs dressed and he needs medications, but at least he’s cute about the medications and pretends to give them to you by putting a syringe to your belly, and when that’s done you really should go back to bed,

except that you’re being audited because you had the audacity to claim a special needs adoption tax credit for the special needs child you adopted, and you have to go meet with your accountant about it, and you can’t reschedule because you already rescheduled two weeks ago when your son was admitted to the hospital with a fever of 103 and now you’re running out of time to respond to the audit notice, so you spend your morning scanning adoption documents and medical documents to take with you, only in the end you can’t get the printer to the work and have to take your originals with you anyway, but at least the accountant is positive about it and the meeting only lasts half an hour, and then you come home and you really should go to bed,

and this time you do, even though your husband can’t because he has a meeting he can’t miss, but you kiss him goodbye and go to bed and thankfully your son decides to take a good long nap, and you wake feeling well rested and actually manage to eat something, and still get the afternoon TPN ready, even though it takes you three times as long and even though your son empties every forbidden drawer and scatters all kinds of things around the house for you to clean up and put away and spills your ginger ale on your desk, but in the end you get it all done anyway and save the stuff on your desk from damage and only wish just a little bit that you could go back to bed

but instead you plan a simple dinner for you and your husband once he gets back from work because he’s rested less and eaten less than you, except that only 2 minutes before dinner is supposed to be done cooking, the infusion pharmacy delivery arrives with the TPN that they forgot to deliver with the order that came earlier in the day, and you think you turned the burner off, only you didn’t, and you don’t catch on to it till dinner is black and smoldering in the pan,

but at least you happen to have another box of pasta roni, and at least it only takes 10 minutes to cook, so you make dinner again, and you have dinner and your son scarfs down a quarter of a tortilla, and when you’re done you sit down at your computer and you blog about it while you wait for it to be time to go to bed?

It’s been one of those days.

I have celebrated many Mother’s Days. There those childhood ones where we made breakfast and served it to mom in bed. There were the exciting ones as a missionary where I got to call home, one of only two opportunities to do so each year. There was the newlywed Mother’s Day when Brian got me an “I love my geek” shirt and we taught Primary together. And the Mother’s Day we spent in Italy where the members at church were blissfully unaware of the fact that Mother’s Day even existed and no one even tried to give me a potted plant.  (It should be pointed out that Italians celebrate Mother’s Day a month earlier. – Brian)

There were hard Mother’s Days when we were trying to conceive. Many of those were dreaded and tear-filled and I felt it took all my courage just to set foot outside my house. There was the Mother’s Day spent in Montana for Brian’s grandfather’s funeral where children and grandchildren surrounded a beloved mother in her time of need.

I’ll never forget the mother’s day of the fifty-cent dress. That was the Mother’s Day that I gave up feeling sorry for myself. I found a spectacular green dress the week before Mother’s Day, added a pair of impractical, wonderful shoes to match, and stood tall that day for under $10. I was happy with who I was.

The next year, I was surprised to find myself a mother. It had all come so quickly, and so differently than I’d ever imagined, that I was both thrilled and stunned that day. I was still in awe of the tiny little baby boy who slept snuggled in my arms that day.

I couldn’t help to think, though, that day that while my arms were full, his birth mother’s weren’t. I could remember those sad, empty-armed mother’s days in my own past, and prayed that she would find comfort.

Another year passed, and I spent mother’s day in the hospital. This was a day without frills and another day when no one even tried to bring me a flower at church. But I was grateful simply that Patrick was able to get dressed up and go with us to the hospital’s church services. We’d nearly lost him earlier in the year to Candida, and he’d just survived another battle with it. I knew I had a treasure that year.

And now, this year, here we are again on Mother’s Day. This year Patrick’s been blessed with better health, and as a result, he’s growing into quite the amazing little boy. I am even more amazed this year than every by the miracle he is, and the awesome priviledge of being his mother. I love spending my days with him.

Today, I woke up at 6 a.m. to sneak into his room and start a dose of IV antibiotics. I got his belly drain flowing again, gave him a pacifier, and tucked him into bed. I am tired from sleep sacrificed to take care of his medical needs. My body aches and I am sunburned after a day spent wandering around downtown Salt Lake with him yesterday.

I’ve never been so happy to be so tired and so achy.

I know this kind of Mother’s Day is a rare and precious gift. My previous mother’s days and the experiences of these past 3 years have made me realize that far too many women are aching in other ways today.

Some mothers have lost children. Some worry their children are lost. Some wonder if they’ll ever have children. Some have children, but ache that they can’t have more. Some are missing their own mothers. Some are tired single moms. Many, many women feel the ache of dreams unfulfilled today. That ache is a sign of a mother’s heart.

And I know that today I am lucky to spend the day chasing a toddler and doing my best to pamper my mother and husband’s mother.

And like the Sunday of the fifty-cent dress, I will stand tall, aching limbs and tired eyes… in gratitude for the gift of another Mother’s Day.

This week in Sunday School, we studied the account found in the book of John Chapter 9 of Christ healing the blind man. For the record, this has become one of my favorite stories in all of scripture.

If you don’t know it, or don’t remember, here’s a brief summary.

Jesus and his disciples pass a man who is blind. For some reason, the disciples ask Christ about the man’s blindness, wondering if it perhaps came from some sin. Jesus answers that it was because of no sin, but that the miracles of God may be made manifest. He then spits in the dirt, makes clay, puts it on the man’s eyes, and sends him to wash in the pool of Siloam.

The man does so and receives his sight.

The result of this action, performed on the Sabbath day, is a huge debate. The healed man is subjected to what appears to be a day of questioning by the Pharisees, the local leaders. His parents are even questioned. At first he knows little of Christ, but as the Pharisees press him to deny the source of the miracle, his determination that the act came from God only grows stronger.

In the end, the man refuses to deny Christ and is cast out of the synagogue, exiled from society. Christ comes to him and teaches him that He is the Son of God. The man immediately believes.

Now, there are a lot of reasons that I like this story. But there is one reason I’m chosing to share it today.

I am an activity day leader in my church. Twice each month, I organize an activity for girls age 8-11. We teach them new skills, play games, do service projects, etc. I recently learned of a girl who lives in our neighborhood who has shown an interest in coming to church and to these activities. I went last night to meet her.

The girl is mostly blind.

As soon as we set foot in her house, she was beaming. She fell in love instantly with Patrick, bringing him toy after toy to play with.  She listened as I explained to her that he has feeding tubes attached to him, carefully let me guide her hands so that she would know where they were, and then once she knew it was safe, happily helped him to play.

Patrick in turn fell in love with her. He even came home wearing a friendship bracelet she gave to him.

As I watched these two children play together, my mind returned to the story from Sunday School.

Many people look at a child with a disability with sadness and pity. But as this girl’s mother and I discussed last night, these are just normal children with one extraordinary thing about them.

I don’t believe that a child is born blind or with a severe birth defect by accident. I believe, instead, that these valiant spirits are chosen, or perhaps even chose, to take on bodies and lives with more difficulties, knowing that from birth they have the kind of faith that works miracles.

I think that when Christ healed the blind man on the Sabbath, it wasn’t done in ignorance of the consequences that would come. But I think he knew of the caliber of that man’s soul. And he knew that through that man’s life, many others would be blessed.

I have seen my own son’s life build the faith of those who meet him, too. And I saw my faith grow last night, too in the presence of a little girl whom I’d just met.

 “And as Jesus passed by, he saw a man which was blind from his birth.

And his disciples asked him, saying, Master, who did sin, this man, or his parents, that he was born blind?

Jesus answered, Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him.”

As I said in my last entry, I promised I’d share with you the findings of the Upper GI Fluoroscopy done last Thursday as we left the hospital.

To begin, let’s have a refresher course on what a normal, healthy set of intestines look like. (Thank you wikipedia for the image.)

 

As I’ve mentioned before, Patrick is missing most of this anatomy. Instead, he has only the duodenum and his descending colon. In the image above, that would be the little dotted line that goes from the stomach to the small intestine, and the long straight right side of the colon that connects to the rectum.

Now let’s have a look at an image taken a month after the surgery that reconnected Patrick’s small and large intestine in August of 2009.

Notice that the small intestine (duodenum) is enlarged while the large intestine (colon) is narrower than it should be. At the connection between the two is a very narrow surgical connection that is at best no larger in diameter than Patrick’s finger.

Ok – now let’s look at the image taken just last week.

Can you see the problem? Yeah, the narrowing is just as small as it was, but the duodenum has been stretched and stretched and stretched until it fills half of Patrick’s abdomen. We know from sad experience in tummy draining and vomit that this can hold approximately half a liter of fluid. That’s about a soda can worth of bile. And since it can never empty completely, it’s always secreting trying to digest the fluid that’s already in it.

The good news is that the colon is a nice normal, healthy size now.

So you may be asking, what can be done?

Well, of course surgery would be an option. They could revise the connection… but intestinal surgery is painful and tricky and dangerous. A transplant would definitely be the very best solution. But, as we don’t know how soon a transplant will come, and we don’t want this problem to get any worse and risk bigger problems like total loss of motility (Oh my GOSH does this intestine move now!).. or worse yet, rupture.. we can’t afford to keep waiting for transplant to fix this problem.

So, we’re going to start with an attempt at the less invasive. A bowel dilation. Here’s what will happen. Patrick’s GI will put a scope down his throat and into his stomach and then intestine. When he can see the narrowing, he’ll follow with a guideware that will go through the anastamosis. (Vocab word: That’s a surgical reconnection of intestines). Then, he’ll run a balloon over the wire and slowly inflate it, hopefully stretching the narrowing to a more manageable size.

If all goes as hope, then instead of all that bile sitting in his small intestine, he’ll be able to pass it through his colon and he’ll start pooping… a whole LOT. But at least it won’t be sitting, and at least he won’t be vomiting. And the intestine will rest and be able to shrink back to a more normal size. Making it much healthier for transplant.

Or so we hope.

So, Dr. Jackson is talking to Patrick’s surgeon and to his transplant team about this plan and then, if they give the go ahead, then he’ll schedule for this to be done outpatient as soon as it fits onto the schedule.

Since he’ll already be sedated, we’re going to save Patrick another painful scary memory and will have them do the botox shots in his leg at the same time.

That’s the problem. And that’s the plan. It was definitely interesting to have a look under the hood at the cause for all the symptoms we’ve been seeing.

I have a new vocabulary word this week.

Rigor:  (n.) a sudden feeling of chilliness, often accompanied by shivering: it sometimes precedes a fever.

Tuesday morning, I woke up to the wonderful sloshy sound of Patrick throwing up in bed. As is often the cause, his g-tube had stopped draining during the night, leaving his stomach overfull. I jumped out of bed, woke Brian to help, and went to the task of comforting, cleaning, and redressing Patrick. We made relatively quick work of it and by 5:30, Patrick had fallen back asleep in my arms. Brian put the bed linens in the washing machine and had gone to shower for work. I was drifting back to sleep myself.

A couple of hours later, Patrick woke up again. He seemed tired still and his eyes were bloodshot. My gut said that things weren’t quite right with him and I decided to keep him closeby. In fact, I even opted to take him in the shower with me to wash the vomit out of his hair just because I thought quick and close to mom needed to be priority. Then, I dried him off and changed his dressing, as it had gotten quite dirty, too, and we headed downstairs for breakfast.

Breakfast for Patrick usually means that I give him a cup of his special formula and some toast or tortillas or other finger food. Meanwhile, I draw up his medications, take the ethanol lock out of his line, and start his IV motility medication.

That morning, though, he was having none of it. He wouldn’t touch his drink and just started whimpering to be held. I was worried, so I took his temperature. Only 99.1 F.  But, as I worked to quickly give his medication, Patrick started to shiver on and off. He was whimpering a little and begging “mamma”.

This concerned me, so as I started the IV meds, I called Brian to tell him I was calling the doctors to request blood cultures. I’ve seen those “chills” before and knew they meant bad news. Brian agreed with the choice. Then I moved Patrick to the living room and offered to turn on Bob the Builder for him ( a.k.a. “diggers”) – his fall back comfort viewing when sick. He told me no. I asked him if he wanted doctors. He said “doctors” and reached for me. And then the shivering got worse.

Still no fevers, but I was worried, so I wrapped him in a blanket and started packing for a trip to the hospital. He started to really cry and his hands got cold as ice. Brian replied to my message saying I was going to the ER with an offer to come home and pack for me later. I knew that was right, so I stopped packing. I grabbed the diaper bag, a day’s TPN and medicines, and my spare keys (couldn’t find my keys and felt I didn’t have time to waste.)

It took 40 minutes to get to the hospital. Patrick cried and shook uncontrollably for the entire drive up. I valet parked the car – I didn’t dare take the extra time to find a parking space – and hurried into the ER.

I’d called ahead so they were expecting us and took us to triage right away. There they took Patrick’s temperature. 103!! The nurse gave him a dose of Tylenol and showed us to a room.

Thankfully, the Tylenol helped and Patrick’s temperature came down. Finally snuggled in my arms, the shaking stopped and he came back to himself quickly.

Dr. Jackson, his GI, was the attending this week, so he came and met us and prescribed some IV antibiotics. We agreed it was best to stay the night at least to make sure Patrick didn’t get worse or have reactions to the medicines.

By noon, cultures were drawn and antibiotics were running. I realized I had left so quickly I hadn’t even had a drink of water, let alone breakfast, all morning. So, I called a volunteer who came to sit with Patrick so I could eat and get my car from the valet. Then, we moved upstairs.

Patrick was old enough this time to “graduate” to the big kid medical unit. They gave me a choice and I told them we’d go whereever. With cold and flu season not quite over and an outbreak of rotovirus going around, I wasn’t disappointed when we were put with the big kids. In fact, I think Patrick kind of liked it. It meant more freedoms for him. And we were still able to walk just down the hall to visit with him favorite nurses.

In fact, the only difficult part about it was not having our primary nurses there. Patrick is far from a simple case and it’s easy to make mistakes. In fact, I’m always surprised if there isn’t at least one dangerous mistake made. (This stay was no exception, but things turned out ok, so I won’t go into it.)

By the time we made it to the room, Patrick’s temp was just over 100. He was active and happy and you’d never have guessed he’d been so sick in the morning. He didn’t need another dose of fever reducers again.

The admission was busy. It takes time to give Patrick’s history and explain how to give his care. I asked for orders to be written “per mom” as often as possible. Thankfully, this resident was willing to oblige and I kept control of as much as the hospital would allow.

Finally, on our way back from a chest x-ray (to check for pneumonia) Patrick had had enough. He just snuggled down and fell asleep in my arms.

I didn’t mind. It gave me time to catch up with one of the residents who we love the best who cared for Patrick back when he was in the hospital all the time. She was as excited to see us as we were to see her, and got quite tearful when she learned that Patrick was now walking and talking.

We ended up staying two nights in the hospital, waiting for lab results to give some explanation of the sudden high fever. Besides our usual complaints of no sleep, though, it wasn’t a bad stay.

At first, they asked for him to be kept on monitors, which is nigh unto impossible for a 2 year old. He couldn’t hold still enough for them to read most of the time. So, we got lots of toys and books to try to help the job.

Then, they gave permission to turn them off. Patrick figured out how to push his IV pole and was more than content to spend whatever time was allowed wandering the halls of the hospital. We visited his friends in the Infant Unit. (All of whom beamed to see him grown and walking). We played in the play room with his favorite Child Life specialist. We went out to the patio and to the cafeteria and to the garden. We rode the elevators up and down over and over again. (I’d ask him if he wanted elevators. He’d make and elephant sound. Still don’t know if he’s disappointed I never ended up taking him to the zoo.)

And inbetween we took long naps and watched Bob the Builder and Cars on my laptop. Patrick figured out how to use the footrest of my chair as a seat, and then to climb up in to look out the window where he could see the road coming down from the University and a steady stream of cars.

Patrick thought it was very cool that “co-co Ja-ja” (Doctor Jackson) stopped by to play every day.

Finally, we made plans to go home without a diagnosis and without antibiotics and just hope that it had been a weird viral fluke. Then, half an hour later, the lab called to say that a bacteria had grown. He had Coag Negative Staph growing in just the lumen where his TPN was running. The fact that the sample drawn from his foot didn’t grow any bacteria probably means that we caught the infection just after it got in and hopefully knocked it out right away.

So, yesterday we were discharged to home with orders for blood cultures to be drawn for the next several days to verify that the infection is gone. Also, he’ll finish 2 weeks of IV antibiotics here at home.

A couple of good things came out of this stay. First of all, I’ve been trying to tell Patrick’s GI that his output seemed to be getting higher and higher for the past several months. But, having him in his care in the hospital really drove home just how high I have been trying to say it was getting. And it made him ask why.

So, we talked about how it was most likely a result of the surgical intestinal blockage we have known about for a long time. And how not much can be done without posing a risk to transplant. At first, Dr. Jackson said that maybe he’d prefer not to know how bad the blockage and resulting distension had become, if we couldn’t fix it.

Then yesterday we decided that he should discuss the problem and possible solutions with his transplant team in Seattle. He called and talked to Dr. Horslen and they agreed to look to see what could be done.

So, half an hour before we were supposed to leave the hospital, Dr. Jackson dropped in to say that he’d like an Upper GI contrast study… the one where they put contrast into Patrick’s belly and then watch it move through on X-ray to see what his intestines look like.

We decided to take advantage of the fact we were inpatient and quickly squeezed this test in before going home.

I think I’ll wait to tell more about what we saw until I’ve had a chance to discuss the results with Dr. Jackson this Monday. I’ll say this, though. If you’ve ever watched me drain a half liter of fluid out of Patrick’s belly all at once and wondered where it came from – well now I know. Patrick’s duodenum has stretched big enough to hold it all. Now we just have to decide if we try to do anything about it.

We got home last night around 4:30 p.m. Patrick happily went right to bed and slept for the next 4 hours. He got up at 8, played a while, then went back to bed at 10 and slept till the phone rang at 9:30 a.m. today. He was very happy to see his own room and his own bed.

And I am working hard to re-enter my normal life, to clean up the mess I abandoned on Tuesday, to keep up with the new medication schedule, and to find my sense of sanity and order again.

I much prefer the “rigors” of daily life.