TSA – Patrick Hoopes

Transplant Day 132 and a follow-up visit in Nebraska

I am writing from the window seat of a room in the Omaha Ronald McDonald House. Today marked 1 month since they told us that he could go home to Utah. And so, today, he had a follow up visit to see how things are going.

It’s been an interesting few days. First of all, can I say how much it broke my poor little brain to try to pack for this trip? Travelling with TPN was hard. It took lots of big luggage and days of coordinating Fedex deliveries and special planning and packing for airport screening. In the past, I brought every suitcase we own packed to the 50 lb limit and also have at least 4 boxes shipped. This time, well, what I needed to bring was not iV supplies. It was formula. And food. I had to pack snacks.

i got everything gathered to put into suitcases and I looked around and I had too many suitcases. And the problem flustered me so much that I had to just go to bed and sleep on it. I had nightmares about not being properly packed. Then, I got up in the morning and I filled the extra space in one suitcase with pillows and blankets and I decided that we didn’t really need one bag as a diaper bag and another one to carry my electronics and medicines. And none of the bags weighed over 40 pounds. And it was all ok.

In fact, it was easier to get to the airport. Brian had flown in and out of this city enough times to know which flights would be fuller and have a busier airport and did a great time picking us a slow time in the airport. Patrick and I donned masked. (I wore one so Patrick wouldn’t feel so alone).. and i gave him a new pair of touch screen capable gloves. And we strode into the airport not struggling under the weight of overfilled bags.

Brian also had applied for TSA precheck status which meant screening for him and Patrick went much more easily. I still had to go through a regular line which felt, well… very strange. To leave them and go off on my own. But things were simpler. Patrick’s many medications had to be checked in the mass spectrometer.. but that is so much simpler than checking a cooler of IV fluids that they still were done by the time I got to them. They’d have beaten me had they not decided to let Patrick be screened in his wheelchair/stroller.

The flight was difficult. Patrick really has a hard time not playing with the window shade and keeping his feet off of the feet in front of him. Under normal circumstances, you can redirect this. But his steroids make it very hard to change Patrick’s mind once an idea enters them and we had a few stretches where I just had to hold onto him to keep him from hitting the seats around us until he settled down. It wasn’t all that way, though. He ordered himself a “diet water” from the flight attendant and had a happy snack time and we played with stickers and some mommy school games I’d laminated and brought along. Patrick’s desire to learn still overpowers most other things. And thankfully, the flight was only 2 hours anyway.

We rented a van and drove to the Ronald McDonald House. It was strange to be back and feel so at home here. Before out of state clinic visits were big adventures in new places. Now, well.. this is just a second home. Patrick, in fact, loves pointing out that we are coming home when we come back to the Ronald McDonald House each time we do. He is very mad at me that we are not restocking the fridge with his favorite foods and are eating out instead.

However, I like him eating out. He figured out he likes hamburgers last week and I love seeing him eat half of a hamburger plus some fries when we get him a kids meal.

We are aiming for a more vacation-like trip. Last night we went out and explored a shopping district called Old Market that we heard about but didn’t brave in the cold. It’s kind of a cool atmosphere. Like a toned down Pikes Market in Seattle, but with fewer people. And well patrolled by police. They allow street musicians, but not others begging on the corner.. so you could enjoy that ambiance of that little addition. It is warm here and nice to be out.

We did stop at the store for a few snacks and staples (and some sugar-free soynut butter that I haven’t been able to find in Salt Lake). And we stayed up snacking while waiting for meds time, even though Patrick was far too tired and overexcited about being here.

Today’s been a really nice day. In the 70’s, so we have been able to be out in short sleeves. We have never caught nice weather in Omaha before. We got up with the sun, as Patrick always does.. and made it out to go to the zoo early. We really love this zoo and find something new each time. This time it was the otters that caught his fancy. He didn’t like the sea lion training, though we did. And he was tired and wanted to go back to the room early, but we didn’t let him.

I’ve been tired today. At midnight last night, as I refilled Patrick’s formula feeds, I noticed that I’d left the charger for his feeding pump home. And I tossed and turned worrying about it all night. Trying to think who I could borrow from and what it would take to get homecare set up again in this city for just a few days. It was top priority this morning. It wasn’t hard to fix. I made a call to our homecare company who said that they often will lend chargers to people in a similar situation. So I called Children’s Home Health, the company we used while we were here, and explained the situation. They said no problem and to come pick up a pump. I signed a form saying we’d pay if it wasn’t returned and they gave me an envelope to return it in since they won’t have open offices the day we leave. And that was that. Easy peasy and why did I worry so much?

Oh well..

Patrick’s clinic appointment was this afternoon. That was also easy peasy. We checked in and there was some confusion about insurance now that we are more than 3 months after transplant.. but they voted in the end to leave that for the financial folks to sort out. We weighed Patrick in and he’s gained again.. and even 22 kilos, or almost 50 pounds.

The doctor we saw today was the surgeon who did Patrick’s transplant, Dr. Grant. This made me very happy. Not only does she, literally, know him inside out but we really seem to click as far as philosophy of care. She said that he was doing remarkably well and to keep on this same path. They were happy to hear he was eating and the dietitian adjusted his feeds again so that he’ll have 8 hours without tubes in a day… I had to promise to keep him drinking in that time so he stays hydrated.

Dr. Grant asked what we were doing about school. We confessed that we hadn’t dared send him back yet and were setting up home school instead. She actually seemed pleased with this answer.. she kept saying “It’s only been 4 months.” Pointing out that it’s easy to overlook how new this all is because he doesn’t have an ostomy or a feeding tube in his nose as most kids do this short time after. She started out recommending summer school or back to school in fall.. then conceded that maybe sending him back sometime after spring break so he can finish this year with his same friends and teacher would be a good idea.

After his physical exam, she pointed out some stitches we could have removed next time he’s sedated. And she said that she doesn’t think he still needs any physical restrictions. Monkey bars here he comes.

And then she said the words we’d dreaded. “So what do we do with this central line?” I decided to just speak my mind. I told her that we were ok with him not needing a line, but worried removing the one he has given how hard it was to put in and the chance of losing that access. I said this once before to another surgeon and was told I was being overly conservative. But Dr. Grant suggested just what I had imagined as the best solution in my mind: A port. This is a central line but one that stays under the skin except when it’s needed. There’s a small disk that can be accessed with a needle.

The nice thing about it is that it isn’t as prone to infection as a broviac line. It won’t need a dressing and he’ll be able to bathe and swim and get dirty. Also, it means that Patrick’s labs will be easier to draw and less painful, since they can numb the site. The disadvantage is that it’s still a central line and runs a risk of infection and needs careful monitoring for fevers.

We made a plan to come back after the end of the school year and have them change Patrick’s broviac line for a port. We’ll leave that for a little while longer till we know it’s safe, and then remove it.

We won’t need to come back to Nebraska until then. Oh, and labs can now be once a week.

So overall.. still good news.

And now it is on with our mini-vacation. We have had a snack and a nap and are now headed over to the hospital for movie night.. then back here where some nice church ladies are cooking us a turkey dinner.

I don’t want to delay the fun, so pictures will have to come in a later post.

Transplant Pre-evaluation: Night 3 & Days 4 & 5

Boy I didn’t mean to leave you all in a cliffhanger there. May turned out to be a rough month for us. Patrick was hospitalized twice with fevers and Brian & I have been sick, too… Blogging is one of the first things to go when things get hectic in our family. I’ll blog more about our first experiences inpatient at Primary Children’s… But I left you all hanging with the story of our first inpatient experience at Seattle Children’s.

So here goes…After Patrick’s GI sprung on us the idea of admitting him to the hospital for labwork and a transfusion, we made a few calls to make sure it was approved by the insurance company, and then the transplant coordinator took us to the admitting desk.

We traded in our clinic “Parent” badges for inpatient badges on lanyards that allowed us to wander around the hospital anytime day or night. Someone from admitting met us and led us over to what would be our room for the night. A nurse came in and started to take Patrick’s history. When I handed her my printed medical fact sheet, we got instant brownie points. She took the first vitals and got us settled in the room, but then her shift ended. This is the problem we’ve witnessed a few times… Things move slower if you arrive at shift change because there’s so much else going on.Around 7:30 things finally started to progress. Because we hadn’t been planning on spending the night, there were a few medical procedures that we would have done in the hotel room that we found ourselves having to ask permission for, and even supplies for… But they finally got it all done. We met the doctor and made a tentative plan for labs to be drawn once the blood for the transfusion had arrived. The IV nurse came and took some labs for blood typing and left a peripheral IV in Patrick’s foot that they’d be able to give the transfusion through.

Around 9 things finally settled down enough for us to order some Chinese takeout. (The only restaurant open that would still deliver to the hospital at that time of night)… and after it arrived, Howie went back to the hotel room and brought back the things we’d need for the night.Our room was in the surgical unit and was really quite nice. It was a shared room but Patrick was the only patient overnight. It had a nice couch that folded down into a bed, a bathroom in the room, and a window with a pretty nice view. When it wasn’t cloudy, you could see the space needle.

Things went pretty smoothly overnight. Patrick had a really great nurse who was impressively quiet. I woke up when the blood arrived for the transfusion so that I could take care of the TPN (they allowed us to run our home pumps, providing we were always available to operate them).

The next morning they wanted to do a floroscope (contrast X-ray) of his intestines. This was to be done in two parts so they could see the top and the bottom separately. They showed up early for the first one and took us to radiology where they took a chest x-ray and then strapped him to a board on the floroscope table. The board restrained his arms, legs, and head and also allowed the radiologist to tip and turn him.Patrick didn’t like this at all, but they let Brian and I be close to comfort him (Brian was actually in charge of protecting his head when they turned the board) and Patrick eventually fell asleep during the test

They put a contrast solution in through his g-tube and took images showing it move through the stomach and out his stoma. It was interesting to watch it move through and appear on the screen.Then we were supposed to wait and see how long it took for the contrast to clear so they could see his large intestine without the small.

I was sleepy, hungry (they showed up before I could get breakfast) and frustrated at my plans for a mini-vacation being postponed. When the radiologist hinted that they might keep Patrick another night for the next floroscope to be done, that pushed me over the edge a bit… So Brian sent me to get breakfast straight from radiology and went with Patrick back to the room.

When I got back, he informed me that we’d missed rounds… fortunately we didn’t miss his GI, who came in just a few minutes after I did. He promised that they wouldn’t keep us another night, did a quick exam of Patrick, and then left.

Brian had a business lunch he’d scheduled so I stayed in the room and tried to get some sleep… Unfortunately, we got a roommate whose alarms were going off regularly and that was a mostly vain effort. The rest of the day was waiting and more waiting to see if the contrast would clear out of Patrick’s system… When it still hadn’t by 3 p.m. they finally started to work on a discharge plan. We’d come back outpatient the next day for the next test before our flight.

We finally made it out of there sometime in the late afternoon and snuck a nap in before finally getting out to play a bit.

Our friends Lindy & Kelly took us out for some authentic Italian pizza and then for Seattle’s famous Royal cupcakes. It was good to get to visit and spend some time with them. I was impressed by Lindy’s cunning as she excused herself to go to the bathroom and really went and paid both halves of the bill.

Our last morning in Seattle we got up and went to the hospital for the last time. The radiology tech from the day before was there yet again and very excited to see our names on the schedule. I asked if we could take pictures of Patrick on the table for this test and before you knew it, they’d convinced us to pose for this picture, which seems so wrong to be smiling in, but gives you an idea of what room, equipment, and our lovely lead vests were like.

Turned out to be really good we were there because I’d seen previous tests and knew that what first appeared on the screen was not the full length of large intestine and could encourage the radiologist to inject more contrast until we saw the rest. Because this organ isn’t used, it is rather narrow.

We made it away with just enough time to meet Lindy and Lauren and enjoy a nice walk in the park and a delightful lunch before rushing off to catch our plane. Obviously, it wore the kids out.

Security in Seattle didn’t go quite as smoothly as Salt Lake… I think this is because the first person who I was able to tell about Patrick’s pumps was the security agent at the metal detector who I think mistook the backpack with tubes coming out as something scary. We quickly got things sorted out, though, and they didn’t have other problems with the extra search.Patrick and his daddy slept through pretty much the entire flight and we got home without incident… But with very full mind from everything we’d learned and a much better sense of just what a big deal this all really is.

If I can manage a few more days of health in this house, I’ll post a bit more about how much this one little trip and the plan for transplant affects and will continue to affect our little family.

Transplant Pre-evaluation: Day 1

So the first big question about getting Patrick to Seattle was transportation. With current airport security, how do you get a kid who is connected to running IV fluids through security? And how do you go about transporting a week’s supply of TPN? It has to be kept at a certain temperature and, well, there is just a lot of it. Hauling a cooler and coordinating tubing through the airport just didn’t sound like much fun to us, but neither did dealing with any lost luggage.

So I did tons of research: called the TSA, read every page in the Delta website about baggage, and read websites written by other TPN patients. Finally, I asked the pharmacy if they could ship the TPN ahead of us. Turns out, that’s a free service that they provide. And our wonderful friends Lindy & Kelly helped us find a place in Seattle to ship to and then picked up the shipment and kept it in their fridge until we could get there.

So we were able to travel with just 2 day’s worth of medical supplies in our carryon… which was still enough to fill an entire carry-on sized suitcase, but probably saved us TONS of grief. Patrick’s luggage was by far the biggest and we were probably quite the sight making our way around with Howie hauling 3 rolling suitcases behind him and his carry-on and me with a stroller, a duffel bag, and a diaper bag.

We were surprised by how smoothly things went at security. In Salt Lake a TSA worker came up to us when she saw us getting our stuff ready to go through X-ray. I explained to her Patrick’s IV’s and showed her my suitcase full of medical equipment, including IV solutions and syringes full of saline and heparin. She took over right away. Patrick and I went through the metal detector and (of course) set it off because of his pumps. Then they took us to the little security station and ran their little tests on his medicines. When they were all done, they patted Patrick down and then did a wand/hand search of me. Then they thanked us for keeping things organized and making them easy and sent us on our way.

We were allowed to board the plane first because we were travelling with an infant, which was different but nice, especially since we needed to get his stuff settled so we could get to anything he needed during the flight.

We booked him a seat, not to sit in, but to give us some extra space. His backpack rode there buckled in and Patrick started the flight in his daddy’s arms. He played and he slept and he flashed his bright eyes and smile at the flight attendants and the passengers around us. He was by far the best behaved child on the flight! Whimpered only when he was hungry.

Finally we landed and took our crazy little caravan to the rental car company and checked in at our hotel. We took a much needed nap before heading over to visit Kelly and pick up the TPN shipment.

The day of travel was much smoother than I could have ever expected! Which turns out to be a good thing, as we had a very long week ahead of us