A talk with the transplant team

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

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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.

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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.

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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.

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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.

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