Category: Adventures

Seattle Checkup and a Miraculous Anniversary


Not sure what we were thinking, but 3 days after returning from Yellowstone, we headed up to Seattle. It was time again for Patrick’s quarterly checkup and we decided to keep the vacation going by taking a few extra days and going as a family.

We arrived the day before our appointment and spent the afternoon and evening with our good friends. Lindy, her husband Kelly, and their daughter Lauren live north of Seattle and are kind enough to let us crash their home for these regular checkups. Lauren’s just a few months younger than Patrick and is one of his very favorite friends to play with.

Patrick’s appointment was Thursday afternoon. So, after making a stop for Mighty-O doughnuts (a special treat one of Patrick’s nurses introduced us to), we headed up to Seattle Children’s.

Every visit, they send us a detailed itinerary with individual appointments with his transplant coordinator, dietician, and doctor. But the reality is that they all come into the room at once to see Patrick. His dietician appeared first and couldn’t wait to show me his growth chart. While most kids’ chart shows a nice even curve that tapers off as they get older, Patrick’s has been taking a steep vertical climb lately. He’s in the 50th percentile for weight right now.. However, because he’s only around the 10th percentile for height, this means that he was at about 104% of his target weight. As the team gathered, they couldn’t help commenting on how nice it was to see chunky little legs.

Dr. Horslen, Patrick’s GI, seemed quite happy with how Patrick is doing overall. We talked what Patrick’s eating, how his stomach had been upset by travelling, and some of the strategies being used to prevent infections. Then, after examining Patrick, Dr. Horslen said that he didn’t see a reason for Patrick to need to be seen again as soon. Instead of 3 months, they suggested that we come back in 6. The team in Salt Lake has been doing a great job caring for Patrick and they are happy letting them continue to do so until the transplant comes.

Hearing an enthusiastic clean bill of health (well, except for the Short Gut and obvious problems that come with day to day living) was a special treat on that day. See, July 15th was more than just the day of Patrick’s appointment to me. It was the one-year anniversary of the worst day of my life.. the day of Patrick’s cardiac arrest.

When I look at Patrick now and compare it to what the doctors were telling us was the projected outcome of such a traumatic event I can’t help by say that I believe in miracles. One year before I was watching doctors work frantically and feeling uncertain of what the future could hold. Now, he was full of energy crawling around the doctor’s office, impossible to contain, showing off and flirting as only Patrick can.

After the appointment, we made a quick stop at the Ronald McDonald house to try to get a vision of where it is Patrick and I will be living during his recovery. Patrick LOVED sitting on Ronald’s lap, and especially, for some reason, honking Ronald’s nose. The house is different than I’d imagined, but kind of felt like it could be home for a while.

We decided that dinner that night needed to be something special. Brian suggested a picnic and Lindy and Kelly told us about a place called Carkeek Park in the city.

So, after a short detour chasing down a lost delivery of TPN, we headed into Seattle. We stopped at Pagliacci’s for pizza, then the Laylands guided us to a road where city suddenly turned to beautiful forest that then opened up to a beautiful view of the sound.

We ate dinner, then let the kids play on a little playground in the park. Lauren tried to teach Patrick to climb up the slides.. but in the end, he decided he was a much bigger fan of a giant teeter totter.

Then, we took a bridge with stairs that led us down the bluff and onto the beach.

This was the first time Patrick’s been to a beach and I wasn’t sure what he’d think of it. At first, he wasn’t so certain.. But soon he discovered the joy of walking and stomping in the sand.

Before long, he was cheering out loud! Then we sat for a while and watched Lauren, Brian and Kelly throw rocks in the water.

Finally, we decided it was past bedtime and we’d better head back. But to leave, we had to carry Patrick out. He wouldn’t take more than 3 steps without stopping to cheer.

Friday morning, Brian went in to his company’s offices in Seattle for a few hours. That left Lindy, the kids and I to play. We decided to go back to the beach because Patrick loved it so much. This time, we went to a beach about 10 minutes from the Lindy’s house.

Since I hadn’t planned on beach trips, I dressed Patrick in the only clothes I could come up with for the job. For shoes, he borrowed a bright purple pair of Crocs from Lauren. The result was quite the fashion statement.

It was a cold morning, though. Even beach savvy Lauren didn’t want to throw rocks in the water. I took Patrick down to watch the waves but decided it was a bad time to get wet. So I took his hands and went to lead him up the beach. He surprised me, though. He turned around and headed back to the water and stood where the waves would just lap onto his toes. Once he knew that was safe, he crept forward until the water came up to his ankles. Then he stood there until the cold water had him shivering all over.  The only pictures I got there he looks miserable because he was already chilled to the bone. But at least now we can say Patrick’s stood in the surf.

I was grateful for an Ivar’s stand on the way back where we could get some clam chowder to warm us up. Patrick was just grateful for his carseat. He fell asleep immediately and both he and Lauren slept 3 hours.

We went to a japanese steakhouse for dinner. It was a first for everyone but Brian and myself. Most loved the show, but once Patrick saw fire come from the onion and oil volcano, he was pretty nervous about the rest. He was a fan of the chopsticks they gave him to play with, though.. That was our saving grace.

And then, like all good things, our vacation had to come to an end. We flew home Saturday. Patrick showed his true daredevil character on landing. Because of the heat in Salt Lake, the landing was a bit rougher than usual. The girl sitting next to me almost turned green. Then, as we touched down, I looked at Patrick. He was grinning from ear to ear and chuckling. The smile didn’t leave his face until we’d reached the gate. He LOVED the bumps. My little thrill seeker!

I don’t know anyone who loves life as much as Patrick does. Perhaps because so early on he had to fight to keep it. What a miracle it is to share his life with him.

Attempting a vacation… Line by line

Since Patrick came into our family, we’ve made several attempts at a vacation… and all in vain. For a while, I superstitiously didn’t even want to say the word, for fear that it would end up with another infection. It seemed that the bigger the plans, the bigger the catastrophe.

But.. several months ago, when Brian’s parents suggested a trip to Yellowstone with his family, we couldn’t resist the chance to make another attempt. We booked a room, cleaned our house, packed our bags. With each step closer, I just kept waiting for the hammer to drop.

On the 5th, Patrick’s line sprung a pinhole sized leak. It wasn’t even visible.. but the line pulled air when I tried to draw back and sprayed when we flushed it. So we ran up to the hospital to have it repaired. All went smoothly, especially for 5 p.m. on a holiday. We even made it to a family dinner, just a little late.

Patrick with line newly repaired modeling some of the sterile gear required.

The next day, just after I connected the TPN to the repaired side of the tubing, Patrick stepped on the tubing. The glue used to repair a central line takes 3 days to fully cure, and the tug from stepping on it was just enough to undo the repair. It set back my packing several hours, but we ran up to the hospital and got the repair done.  We were still going to make it, darn it!

I stayed up late packing, then the next morning got up at 7 to drive Brian to work. All day long, I worked to get ready and was stunned to find myself actually loading up the car.

Patrick had an appointment with his GI in the afternoon. The plan was we’d go to the appointment, then pick Brian up from his office, and head north to Yellowstone. I was grinning ear to ear as I left the appointment, knowing we were on the road at last. I was so anxious to go that I even did Patrick’s TPN tubing change in the back seat as Brian drove so we’d get out of town before rush hour.

An hour and a half north of Salt Lake we stopped at a rest stop outside of Malad. Patrick needed a diaper change. As I was taking him out of his carseat, his tubing caught on the buckles. The repair came apart, again.

We had to decide what to do next. It was an hour and a half back to Primary Children’s. Or, it was a little more than that to the hospital in Idaho Falls. I’m not sure what possessed us, but we decided we didn’t want to turn back. We’d gone to great lengths to get a spare repair kit to bring with us, just in case. Surely the repair could be done at another hospital.

So, we made the quick but nervous drive to the hospital, arriving around 8 p.m. Eastern Idaho Regional Medical Center is one of the best hospitals in Idaho. But it is an adult hospital. Which meant an adult waiting room with scary things like chest pains and seizures, broken bones and more. They were kind and willing to help, but got slammed with these difficult cases all at once, so they asked if we’d mind waiting in the waiting room.

Around 10, they finally invited us back to a room. The doctor came in and we tried to explain what was wrong. He seemed a bit stumped about what we were trying to explain about one lumen of a double lumen line being broken. Finally, Brian spoke up and said, “We have a repair kit and know how to do the repair, but we need some supplies and a sterile environment.. and maybe some help.” The doctor agreed to let us do the repair.

The nurses did their best to gather up the extra supplies that we needed. they were a bit different than what I’d seen used, but I knew how to use them. They also offered a nurse to be my assistant as we worked.

The process of repairing a broken line is a simple one, but must be done just right. First, the people doing the work puts on full sterile gear, including mask, gown, and cap. The line is clamped off so it won’t bleed. Then, the line is sterilized. Using sterile scissors, the broken part of the line is cut off. This cut must be perfectly straight. The repair piece is then connected. It has a tiny metal tube inside you slide into the remaining original line. You test to make sure it flushes and draws without leaking, glue the two pieces together, cover the repair with a protective plastic sleeve, then fill that sleeve with a sterile glue to seal the work. It’s delicate, sterile work.. but not really complicated.

Or so I thought.

It was so strange to be gowning up to do this. I was nervous, but pretty confident. I’d seen this done at least a dozen times.. and twice already this week.

Once I started, though, I got scared. Because the line had been repaired (and trimmed) twice in the week already, it was too short to repair just one side. A double lumen line is made of two tubes encased in one that branch out a couple of inches past the insertion point. I had to cut the line where the two tubes were still one.. meaning we had to shut off the TPN for at least 4 hours from when I finished the repair. That added some pressure.

Repairing this section is harder, too, as there are two little metal tubes to fit into the two sides of the double lumen tube. The work was more delicate and the fit was more essential.

As I worked, I felt like a bumbling idiot. I was guiding the repair. The nurse assisting me had never worked on a line repair before, so she had to follow my instructions. Brian was talking me through it, but had to work to keep Patrick restrained. My first cut was a little crooked and leaked when flushed. The second cut fit. I slid the sleeve on and tried to fill it with glue, only to discover that the glue was slippery! I’d seen nurses struggle with this before, but never imagined that that was the problem. I’d insert the needle into the sleeve to fill it with glue and it would slip out of place. I probably spent 10 minutes or more trying to put the glue in.

Finally, it was done. We tested it, dressed it, taped it down as securly as possible, filled the line with heparin so it wouldn’t clot… And the reality sunk in.

My repair seemed really sloppy and if I’d screwed up, we were hundreds of miles from home or anywhere that knew how to fix my mistake. And Patrick’s TPN was shut off… couldn’t be restored until the line was fixed and the glue dried for at least 4 hours!

I kept my calmest face on as they did a quick discharge… then went to the car, buckled Patrick in, gave him a lollipop to keep his blood sugar up.. then sat down and cried as the impact of what I’d just done sank in.

We drove to Rexburg, arriving around midnight. Brian checked us in and we moved the luggage. Patrick loved the hotel room… a suite, so we’d have a fridge for the TPN. He stayed up playing till about 1, when I finally succeeded in singing him to sleep. Then I said some very urgent prayers for help that my feeble attempt would be good enough, and that I would regain a sense of peace and confidence. Then I fell asleep, too.

I dreamed all night of broken lines and taking lifeflight to Utah because I’d made a mistake. At 2:30 it was supposed to be safe to use the line again. I got up flushed it slowly… no leaks. Then I started the TPN. I sat up for the next half hour and checked again.. still no leaks.

In the morning, we all slept in.. exhausted. I’ve never been so grateful for room darkening curtains in my life! Patrick had slept soundly… no whimpering like he does when TPN isn’t running. I pretty well expected to find him soaked in leaked TPN when I got him up, but the dressing was still dry.

The repair held well and is still holding.

We ate breakfast, packed our bags, and got on the road again. I can’t describe the feeling of relief and joy as I watched a very happy, healthy Patrick walking along behind the luggage cart on the way out of the hotel.

We arrived in West Yellowstone early that afternoon. We’d made it!

I’m afraid the stories from the rest of our trip will have to wait for me to write them down in the morning. Needless to say, it was a wonderful week! I am so grateful to a Heavenly Father who understands the importance of small things like finally taking a family vacation and hears and answers prayers to the effect… who helps and guides and sends the Comforter when needed… Who helps to qualify a sometimes awkward, impulsive and anxious mother, with the help of a calm and constant father, to do unimaginable but necessary things – all for the good of her family and child.

http://www.facebook.com/v/1424011274297

Who needs sleep?

There’s a song by the Barenaked Ladies called “Who needs sleep?” Here’s a line from that song: “With all life has to offer, there’s so much to be enjoyed. But the pleasures of insomia are ones I can’t avoid.”

If you’ve been waiting for an update on the concert, I need to apologize. See, Patrick’s been having a hard time sleeping this week. It seems every few nights something goes wrong and wakes him up. First it was diaper rash. (When his prescription strength creams fail him, the result is massive skin breakdown that makes me want to cry just looking at it.) Then, I accidentally turned off his TPN pump and had to monitor glucose and hydration in the middle of the night. And my little happy-go-lucky optimist responds to these discomforts by trying to cheerfully play through them. So instead of being up crying, he’s up jumping and playing until I pinpoint the cause of discomfort and get him settled.

So – my good intentions of writing earlier in the week were thwarted by extreme exhaustion. And then a series of coincidences landed us in the hospital for about 36 hours.. not helping sleep, but helping to remind me not to procrastinate.

Here’s a rundown of the other events of the week.

Wednesday, Patrick had an appointment with his GI, Dr. Jackson.  Patrick’s central line was a bit slow to heal this time around and was a bit weepy even 2 weeks after placement. So I asked the doctor to look just to make sure there was no infection there. Since we were looking for infection, he checked his temperature and it was 99.3. So – Patrick and I hung around for an extra couple hours in the hospital. Dr. Jackson came in and we took off his central line dressing so he could examine it up close and take a culture of any fluid that was there. It looked healthy, just healing, so I went ahead and put the dressing back on. Then we went down to the lab and had blood cultures drawn. Those cultures were all negative.

That night, I got that getting sick tickle in my throat and started to run low-grade fevers.. kind of like when you get a flu shot. Never sick, but not quite right. Since the cultures were clean, I said “Ok, he has a virus, too” and didn’t think more of it.

Friday, Brian came home early from work and since we’d all missed a lot of sleep, we all laid down for a nap. I got Patrick up to put on his afternoon TPN around 4. Only when I tried to draw ethanol out of his line, I just got air. Tried again, got air again. Finally, 3 syringes full of air later, I looked and found a hole in Patrick’s central line.

So away to the E.R. we went. They’ve implemented a new policy that sent us to the Rapid Treatment Unit (RTU) for the repair which, by the way, is WAY preferrable to the E.R. Many fewer bugs and much quicker, more attentive care. The RTU is set up to give basic medical care that takes 24 hours or less.

Well, part of any admission is to check a temperature and Patrick’s read about 100. They rechecked it rectally and it came up 99.8, so we could justify not automatically being admitted. I explained the viral symptoms, but they decided to check cultures anyway. Then they repaired the line and sent us on our way.

The next day, Patrick woke up feeling great! No fevers. So since it was memorial day weekend, we packed up and headed out to Tabiona – a small town in Eastern Utah – for a family reunion. He loved the car ride.. playing in the back seat, singing with the radio, napping, and even trying to figure out how to whistle. Had a great day with cousins, aunts and uncles.

That evening, we got home to find two messages on our answering machine. The blood cultures they’d drawn were showing a staph infection.

Now, in case you haven’t noticed this, I’ve spent a lot of time learning from infectious disease over the past year. And one thing they’ve taught me is that 1 in every 20 positive cultures is a “contaminant”.. that is, something that grew in the culture that didn’t come from the blood sample taken. And staph, although it lives on all of our skin and can get into central lines, usually isn’t one you pick up at home. It’s most often contracted in the ICU. Every positive “staph” culture Patrick has ever had has been a contaminant.

So – I called the doctor and made my case that Patrick wasn’t sick and that this was likely a contaminant. We decided to recheck the cultures on Sunday.

Well, Monday morning rolled around. For once, we were planning to be home for Brian’s day off and had a big to-do list.. And at 8 a.m. the phone rang. Sunday’s culture was positive for staph, too. Patrick’s still healthy, but we’d better go in.

So, just to be safe, that’s what we did. We got there at 9:30. Because it was a holiday, things took longer than usual.. but by early afternoon they’d drawn a new set of blood cultures and by 4:00 p.m. had started some antibiotics. Meanwhile, Patrick’s nurses got to run to try to take care of all of his basic daily needs.. a slow process when doctors have to write for them and pharmacy has to fill them before it can happen.

A quick soapbox moment. One of the most frustrating things about going into the hospital is how difficult it is to maintain the same quality of care and quality of life as at home. There are so many more steps, so many more people, and so many more lawsuit-prevention policies that it is exponentially more difficult to accomplish the same things that I do at home in the midst of daily life. In a short 36 hour stay, I think the nurses had to call the pharmacy at least 10 times about administration questions, late medications, and my ever-hated argument about whether or not they’ll let Patrick have his home TPN. (I usually lose this battle and they hang something with sugar, water and electrolytes but none of the good vitamins, minerals, and fats that he’s used to.) They started him out on a super high dose of antibiotics. (I won’t let that happen again. I’ve seen it done 3 times now with the same result and I’ll speak up next time.) And they accidentally ran his TPN at a 5% of it’s prescribed rate for the night. ( Thankfully, this only resulted in a grumpy, sleepless night as Patrick got hungrier and thirstier. They caught it in the morning and there was no other harm done.) I can’t really fault the nurses here. They work their tails off trying to get everything right within Patrick’s first 24 hours. The fact of the matter is that he’s a complex kid who has a lot of special care. For me it’s routine.. but in the hospital, it’s the exception. In fact, there are some things that require special permission every time because it doesn’t match hospital policy. Still, it’s frustrating to me to have to work so much harder to maintain the status quo. I much prefer to just do it myself at home. Ok. Getting off my soapbox now.

Yesterday morning, Dr. Jackson came on service. I ran into him at the nurse’s desk looking up info to find out why Patrick was in the hospital. We talked about the 4 sets of blood cultures that had been drawn. By then, the cultures drawn in the hospital Monday were still negative for infection. Looking back, it was looking more and more likely that we’d had two contaminants in a row. So Dr. Jackson said the words that we love him for saying so often: “I think you can do this at home. Would you like to go home?”

He helped sort out a few more questions and then set the wheels in motion for us to go home. Because they’d started Patrick on an extremely high dose of antibiotic, we had to stay till 4 to have them check his blood one more time to make sure that he’d been able to get it back out of his system. Brian got off work and up to the hospital by 5:30 p.m. and we made it home shortly after that.

Patrick will be on antibiotics for the next 2 days at least and then they’ll check cultures again to make sure that he doesn’t have a real infection. And then hopefully things can go back to our at-home normal again for a while.

Whatever happens, we’re resolved to made better use of this time at home. Procrastination isn’t really an option when you can’t tell where you’ll be hour to hour. I would hate to get the transplant call and leave my house in the condition it’s in right now.

And – I’ll be getting that blog entry about the concert up hopefully before the end of the day tomorrow.

Oh – the best news of all? With us healthy and at home, Patrick slept a blissful 11 hours last night! Which meant mom and dad got some sleep for once, too.

My little social butterfly

In Patrick’s last developmental evaluation by Early Intervention there were a lot of areas where his scores were low. His motor skills are several months behind. Obviously, anything to do with eating is delayed. However, there was one area where Patrick is far ahead. Social.

Here’s an example. We went to Texas Roadhouse for dinner. As usual on a Friday night, the place was packed. On the way in, Patrick spotted one of his favorite things in the world – a man with a bald head. I think he’s drawn to men who are balding because he loves his grandpas so much. Anyway, before I could dodge, he’d reached over and patted the man on his head.

The kind man turned with a smile and said “It’s ok. I’m a grandpa. I like kids.” In fact, he was holding a little boy who we learned was 11 months old.

Well, Patrick was just thrilled to have found a kind man to visit with. So much so, that he climbed right down off of my shoulders and into the man’s free arm. He held hands with the little boy for a bit, then pulled him in to snuggle a bit. It was one of the sweetest things I’ve ever seen! Before long, he’d wrapped their whole party of 10 or so completely around his little finger.

This is a pretty normal occurance for us. Patrick practically begs to be held by most any kind stranger he meets. He makes friends with every person behind us in line. And a “Hi” at the top of his lungs is an every day experience.

It’s so much fun having a friendly kid.

A trip to the zoo

We took Patrick and his cousins (and their parents, and grandpa) to the zoo yesterday. The last time we were at the zoo, Patrick was far more interested in the enclosures than in the animals themselves.

This time, however, he started to take notice that there was something different there to see. In fact, in the giraffe house, he tried all he could to get me to hold him close enough to touch the giraffes. (This could be especially dangerous because one of Patrick’s favorite games is to bonk his head into things he likes).

As is often the case with Patrick, this zoo trip was a little more complicated than your average outing. Patrick’s temperature was a bit high yesterday, so I carried a thermometer around in my pocket to check it regularly.. With the children’s hospital less than 10 minutes from the zoo, we figured we’d see all we could, and then run quickly if he got into the danger zone.

On top of that, while putting Patrick into his stroller, I managed to snap the tubing for his lipids in half. Thankfully, the lipids are just his “cheeseburger”.. needed fats and calories, but optional enough that we could wait till we got home to fix it.

Thankfully, the fever hasn’t evolved into worse and the lipids were restored without incident. I’m sure Brian’s brother thinks that we always have this kind of complications whenever we go anywhere. And, I’ll admit, it happens more often to us that I’d like. But as frustrating as it may sometimes be, it really is worth all the extra work it takes to do these family things when we can.

I am thrilled that Patrick was able to enjoy the zoo. And that he picked my favorite zoo animal to try to pet.

Home again

I just wanted to take a minute to let you all know that Patrick and I made it home safely Saturday evening. The flight was a bit late and very full, but overall the trip went very smoothly. Patrick and I even got the opportunity to ride home next to a very kind woman. She and her husband are considering adopting and I got to spend the whole flight talking up adoption, especially special needs adoption. Patrick liked her, too, and even spent some time playing and cuddling with her during the flight.

We’re all pretty tired. Patrick and I both still have pretty bad coughs. Fortunately, Brian’s healthy.. but has been struggling to make up for the time he took off at work. On top of that, they scheduled a power outage last night. He ended up spending the whole night working to get servers back online.

On a different, and happy note, Brian and I celebrated our 6th wedding anniversary yesterday. With all that we’ve been through this week, it was a pretty simple celebration. My parents took Patrick for a couple of hours and we went to dinner and our first movie in well over a year.

It’s funny how life changes change perspective. Our anniversary was very low-key, yet I found myself overflowingly grateful to have the kind of marriage that doesn’t need a lot of frills to be happy. I love my husband more today than the day I married him.

Adoption Reflections: The journey home

I think this will be the last in my adoption reflections series.

Things started to come together quickly once the court granted us full custody of Patrick. The adoption agency put in a petition for something called an “interstate compact” or “ICPC”. Basically, Michigan and Utah had to formally agree on which laws would govern the adoption. Meanwhile, the hospital social worker and discharge planner started working on the bigger question of how exactly we’d get Patrick home.

Patrick’s care needed to be transferred to specialists in Utah. He needed doctors here arranged and home care set up before he could leave the hospital environment. That meant he couldn’t just be discharged from the hospital so we could fly home commercially.

Eventually, it was decided that our best option was a medical flight. It took some juggling, negotiating, and everything short of outright begging to come up with the $20,000 cost of the flight, but eventually between our insurance company, a private donor, and our own savings, we had enough to book the flight.

Two days before Thanksgiving, the ICPC and flight were arranged, Patrick had a bed and a doctor at Primary Children’s hospital. We were coming home!

There wasn’t room for both of us and our month’s worth of luggage on the flight home, so Brian flew home Tuesday evening with the luggage. I stayed behind to take care of Patrick.

We were scheduled to fly out early in the afternoon on Wednesday, but some bad weather put the flight crew behind so it was after midnight before we left. We bundled Patrick up as warmly as possible. Then they strapped him to a stretcher. We went by ambulance to the airport, where a Leer Jet was waiting. We flew at 70,000 feet to stay out of turbulance. Patrick just slept the whole way.

Finally, we landed in Salt Lake and took an ambulance to the hospital, arriving about 4 a.m.

It was so disorienting to be in a new hospital. Nothing was familiar. I was tired and somewhat lightheaded from the long trip.

Brian met us at the hospital, and once we were checked in, took me home to rest. Leaving my baby all alone in an unfamiliar place was probably one of the hardest things I’ve ever done. But I knew I had to take care of myself.

After a couple of hours’ sleep, we got up and got ready for Thanksgiving. I finally got to see the nursery Brian and our friends had put together for us. We took hundreds of pictures with us to Thanksgiving dinner. And then, once we were rested and fed, we went back to the hospital – where’d I’d spend most of my days for the next 2 and a half weeks.

For the first time, it was our last name on Patrick’s nametag. We were just the parents, not the “adoptive parents”. Our families got to finally meet him. It would be a couple of weeks more before he left the hospital, but Patrick was home.

This year, he gets to come with us to his first ever Thanksgiving dinner. Two of them in fact! We’ve come a long way to get here. Probably the best journey I’ve ever experienced.

Patrick’s First Date

On Monday, Patrick had his first date… play date that is. My good friend Lindy was here visiting from Seattle with her daughter, Lauren. We decided it was a great excuse for Brian to take a day off and for us to finally go to the zoo.

It was a wonderful day! We started out at lunch where Patrick and Lauren sat in high chairs (this was Patrick’s first time) and played with spoons and straws and napkins. Then we went and picked up the zoo pass.

It was beautiful weather. It seemed like every stay at home mom in the valley had decided to get out to enjoy it. I’m sure it helped that there’s an adorable baby elephant, a baby giraffe, and a baby monkey, to name just a few of the new arrivals at the zoo this season.

Lauren was totally into the animals. Patrick was more interested in the enclosures. (The glass, hand rails, etc.) But they both enjoyed the day…

… even if Patrick was worn out by the end.

Patrick and Lauren really seemed to have hit it off. This is good news, as Lindy is the only person I know well in Seattle and Patrick and Lauren will probably get more than their fair share of each other as we go through this transplant journey.

I think this picture says it all. Yes, they held hands in the car, by the waterfall, and at dinner. This could be the beginning of a beautiful friendship.

Re-evaluation at Seattle Children’s

Sick boy on beanbag

You may have heard that Patrick had a day of office visits scheduled at Seattle Children’s hospital last week. After his cardiac arrest and the many complications that followed, they wanted to see him again to see if anything had changed that would affect his transplant status. They also wanted to look to see if he needed to be listed for a liver transplant.

Daddy & Patrick in the ERWhat you may not have heard is that Patrick was hospitalized Sunday night with another infection. This time it was a staph infection which, if caught early, can be treated through his central line and clear easily or, if more established or more resistent, could become a very persistent infection that can hang on for months.

I called Seattle Children’s and tried to reschedule our appointment. However, Dr. Horslen was going to be away for the next several weeks and they didn’t want him to stay inactive on the transplant list for that long. After a few days and some discussion, we made the decision on Tuesday to have Patrick admitted at Seattle Children’s so they could both treat the infection and do the evaluation.

We got the final go ahead late in the day Tuesday. I was up till 1 a.m. packing.  Wednesday he was discharged from Primary Children’s with just time to go directly to the airport. The flight went well. They only real difficulty was that Patrick’s ostomy bag started leaking at takeoff. Well, and that I got a tad bit lost in the airport because we landed in the international terminal and airports aren’t as well marked when you have to take the back elevator routes.

Nevertheless, we arrived at Seattle Children’s around 6 p.m. – just as they were changing shifts. We met part of the medical team that would be following him and, as usual, wowed them by giving them in writing all the information they really would need. It took some time to get orders written, so we had another late night as labwork and meds came trickling in. It was about 2 a.m. before we made it to bed again.

Smiley in SeattleThe nice thing about being inpatient is that it gave me a sense of what things will be like during his recovery after transplant. We started with an early abdominal ultrasound, specifically a doppler. Yes, this looks a bit like the weather map images, only it shows the flow of blood through the veins. They were looking to see if portal hypertension was developing. (As the liver scars, it starts to send blood through other vessels creating extra blood pressure through them. It can cause lots of complications.)

The team rounded about 10 a.m. It was a big group, about 15 people, including his GI Dr. Horslen, his transplant coordinator, nutritionist, and others who specifically follow him. They had looked at the ultrasound and the labs from the night before and at his labwork. Both looked as good or better than they had in April.

Dr. Horslen came back later in the day to talk to me and said he was very glad we’d come. He’d imagined he’d find Patrick in much worse shape after the reports he’d been getting. He did a physical examination, too, and then said that he didn’t think Patrick’s liver was really in bad shape yet. He said that the problems with his spleen were probably mostly due to the many months of infection that Patrick has been through, meaning that hopefully when he’s healthy, his spleen will improve, too.

We discussed other goals, too… including taking down Patrick’s ostomy and replacing his PICC line with a broviac line when he could have surgery. We’ve been going the rounds on the question on whether or not Patrick should have his g-tube removed, too, before portal hypertension makes it bleed and be more difficult to close. However, Dr. Horslen said he was under the impression it was unused when he recommended that, and that if we were using it, he’d be ok with us leaving it in.

It was great to talk to him and to watch him play with Patrick. Not only is he brilliant, but he has a wonderful bedside manner. It made me happy to remember that there was at least one big reason why we chose Seattle Children’s for transplant.

We also had visits that day from the nutritionist and a care coordinator. And then in the afternoon we got to have a little bit of lazy time. Child Life brought Patrick some bubbles and it was fun to watch him experience those for the first time.

When the nurse came on the night shift and Patrick was playing with her while she took vitals she frowned and said “Do you really have to go home tomorrow?” I was surprised because I’d expected to need to be there at least through the weekend… But before midnight they had me making lists of what would be needed for me to be able to go home on the 5 p.m. flight the next day.

Rounds in the morning confirmed that they felt Patrick could go… assuming that we made sure he got a visit from Dr. Reyes, his surgeon.

The rest of the morning I packed and kind of waited for word that we were really going. A volunteer came to play with Patrick so I’d have hands free. About noon, I still hadn’t heard one way or another, so my nurse started making calls for me. I looked at flights and now there was only 1 left and the price had doubled. But – the insurance company agreed they’d rather pay for extra airfare than another night in the hospital – and so I started working on booking a flight home.

Dr. Reyes came in about 1. We talked again about the importance of taking down Patrick’s ostomy. He told me a bit about starting intestinal transplants in Pittsburgh 15 years ago. (He was on the team that did the first ones.) And he explained how they’d learned that the surgery wasn’t really effective without a strong GI team behind it to make sure the patients stayed healthy. He also explained that one thing they’d learned in that time is that survival rates are better without an ostomy.

I ran our other surgical plans past him (liver biopsy, broviac line, and possibly g-tube.) He looked at me and said, “Leave the g-tube in. He’ll need in later.”  So I guess that settles that.

He left and I immediately went back to booking a flight. Meanwhile, the care coordinator came and brought me a cab voucher. My nurse got Patrick ready and booked the cab while I got the ticket. And I literally hung up the phone, put away a few things, and walked out the door.

Flying HomeThe flight home went smoothly. Howie was there to meet us. We had some adventures waiting on the way home including a flat tire, a broken jack, and eventually a tow home. But at last, we are home.

They discussed Patrick’s transplant status in their meeting yesterday. They were ready to move him back to status 1 for a small bowel. They will not yet list him for a liver. When they checked his labs, though, they found a blood culture positive for infection… so the doctors are discussing what to do now. He’s not sick and it could have been a contaminated sample. But they have to work that out before Patrick’s listing is made active again. Time will tell.