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.
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.
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.
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.
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.