Day 5 of evaluations was scheduled to start a little bit later. But, of course, Patrick’s body didn’t know that. And neither did the random neighbor who kept running water somewhere that make the pipes in the wall next to his bed hum.
We’d talked about it the day before and decided that if opportunity presented itself to pack up our room before appointments started, that we’d leave the Lied (hotel in the hospital) and go somewhere more kid-friendly for our last night, just so Patrick could relax.
And so, groggy as we were, we took the opportunity and hurriedly packed our bags.
The last scheduled test of the week was an echocardiogram. Echo’s are tricky in toddlers because they’re very difficult to do if the patient isn’t holding still. And what active 4-year-old is going to willingly lay still with their back arched and their head hanging upside down while someone rubs a sonogram on their neck?
It took both Brian and I and a VERY patient woman named Mary to get the images that were needed. It was a tricky balance of total restraint and distraction so Patrick could still relax. When we finished, Mary said “I have a lot of deleting to do.”
Needless to say, things ran a bit late.
So, when we finished we hurried over to the transplant clinic for the rest of the days appointments. On the way over, I looked to see who we were meeting with and read that it was the child life specialist. Yay! Someone fun!
Only, we sat down and the conversation wasn’t fun. She had a list of questions about our financial situation, coping techniques, insurance coverage, and on and on.
Finally I looked up and noticed that her badge said “Social Worker.” Oh! Oops. I’d misread the schedule.
So I switched gears cuz I had a lot of questions for the social worker. Like where she recommended staying since we didnt like the Lied. (She gave us a strange song and dance about limited availability at the Ronald McDonald house that leaves me a little uncertain about whether or not they’ll actually let us stay there. I can tell you after this week that I am NOT taking Patrick to the Lied to recover after transplant. I can stay there, and might well do so, while he is hospitalized. But he will not.)
Anyway, knowing I was talking to the social worker helped as we could discuss insurance coverage, other benefits (we don’t qualify for any), transportation, lodging and meals. (All of which we will need to pay for ourselves.) You know, all the reasons we started fundraising the first place. We also talked about support system and coping techniques and the strength of our marriage.
Anyway, that visit really was kind of just one more thing to check off the list. Prove we are capable caregivers who are willing and able to pay our medical bills. Check.
She finished and we went on to our next meeting in the same room. This time it was child life. And it, too, started out kind of the same way. Run down the questions about our household, Patrick’s social experiences, developmental needs, etc. She gave us a little book explaining life after transplant and showed us a photo album of transplant recovery.
Then she made the offer that made our whole day. She asked if we’d like a tour of the PICU and peds unit.
I felt really ill-at-ease having Patrick in an adult hospital all week. All of the medical staff who worked with him did a wonderful job treating him like a child. They were patient with him, knew how to get the tests done they needed without being too strict with him, etc. But still, it didn’t feel like a place for a kid.
The PICU and Peds Units are different. They are absolutely made for children. AND because the hospital is primarily an adult hospital, they are small. Almost cozy.
The PICU reminded me of the NICU where Patrick spent his first month. Private rooms with big glass windows. (And tulips painted on the windows. Murals on the walls.) The rooms have a parent sleeper chair in them. Yes, you are allowed to sleep bedside! In fact, they had a parent nap room and shower, fridge and microwave, all inside the unit.. in addition to a nice family area just outside with cupboard and fridge and little hospital kitchenette.
At Primary Children’s, they were remodeling the last time we were there to replace curtained bedspaces with bigger glass divided rooms.. But even the new spaces have kind of a sterile feel to them. Parents are NOT encouraged to eat or sleep in the room, unless you kid is sick enough that for one of the back rooms. (Where Patrick did spend a good share of his time.) And even then the rooms aren’t private.
Strange as it sounds, the PICU at UNMC was actually comfortable enough that I could see us spending some time there for Patrick’s recovery without the environment adding to the feeling of stress that is already far too present.
The next stop was the Peds floor. Boy was the room we spent the night in un-representative. It was the seldom-used room in the old wing of the unit. The regular rooms are much homier, much bigger, and again, all private.
The playroom is inside that unit. Patrick was dying that we didn’t let him out to play there. It really looked like a lot of fun with kid furniture and toyboxes and walls of shelves of toys.
In short, it felt like a place for kids. And in our interview with the child life specialist, we were able to tell her about what sort of things Patrick likes, how he communicates his needs, what kind of toys he likes, etc. That way, we could just update things if we were there again.
That tour kind of wiped away my fears of Patrick being out-of-place and unhappy. Instead, I remembered how at home and part of a family we felt when we were virtually living at the hospital in Michigan while waiting to bring Patrick home from the NICU there. And I could see the potential for that to happen again.
We split up on the way back from that appointment. To leave the hotel, we needed to check out by 1 and we had appointments later that Brian couldn’t miss.
So, since our next meeting was with the pharmacist, I went to the appointment and Brian went to put the luggage in the car and check out.
I went to check back in, though, and found that Patrick’s diaper had leaked. The tests they did this week really did a number on his gut and the poor little kid had some really awful diapers as a result. This was one of them. His pants were bad enougwh that I decided to just not put them back on. I called Brian for a change. (e’d used the spare clothes from the diaper bag the night before.) And we went to meet the pharmacist pants-less.
One of the biggest costs associated with transplant is the anti-rejection medications. For the brand name, our co-pay would be in the ballpark of $700/month. (That’s after insurance.) The generic was $170 a month. I guess that these drugs have patient assistance programs, but as usual, we are just on the brink and may not qualify.
The good news is that the rest of the drugs weren’t as expensive as I’d imagined. Or, I should say, not horribly more expensive than what we’re buying now.
I was nice to have the prices broken down for us. And to get information about programs that might help us pay for these medications.
And then, like 10 minutes later, the appointment was over.
They’d said that the surgeon wanted to see us right after that meeting ended, and so I called Brian and said that he maybe needed to come back. We decided I’d call back as soon as I knew if that was going to happen.
Patrick was really stir crazy by this point, so I opted to wait in the lobby outside of the clinic. By this last day of the week, I was really running out of ways to entertain him. So I taught him how to play “hot lava” and not step on certain colors of tiles on the floor.
He loved the game, which was good, as the surgeon got caught up in surgery and we waited for well over an hour.. plenty of time for Brian to load and valet park the car.
Finally, they called us in. We sat down with Dr. Vargas. He kind of explained what to expect with the surgery. But it was kind of the “for dummies”, or I should say “for newcomers” version. We already knew the basics of the surgery and the risks involved. 4 years is lots of time to do our homework.
But he did tell us some other very useful things when we started asking questions.
For example, that the ostomy they’ll need to create to do biopsies through will be a loop ostomy. (Don’t worry. You don’t have to know what that means. But I’m writing it here, because I want to remember.)
The other great news he told us is that he thinks they will be recommending an isolated smlal bowel transplant instead of an intestine/liver transplant. This is what Patrick has been listed for and has odds of a better survival rate should rejection happen because it is possible to explant (or remove) a bad bowel and just become short gut again.
Better yet, this news means that the liver biopsy shows that Patrick’s liver, although someone scarred from the TPN, doesn’t have bridging fibrosis. This is an even better diagnosis than the last biopsy gave us.. a sign that Patrick’s liver is healing and has the potential to become even more healthy without TPN.
After this introductory stuff, I got a chance to ask my questions. Mine were more of the immediately practical kind. Like, is the current amount of dilation in Patrick’s gut acceptable. (Yes.) And, how would he consider working around Patrick’s overworked, stapled, dilated, and slow duodenum. (He listed a couple of options including hooking it up to see how it does and bypassing the duodenum by connecting the intestine directly to the stomach. I couldn’t tell if this meant that the duodenum was left in the loop or not.) All of that, he said, are choices usually made at the time of surgery.
And finally, I asked what recommendations they had to replacing Patrick’s aging central line. They said they were ok with us having our local surgeon address and made some suggestions about technique.
Really, they said, it is the loss of access that most likely makes Patrick a transplant candidate. If he loses many more sites, it may become difficult or even impossible do the surgery. So protecting this line is an absolute priority.
He left and our nurse coordinator quickly had us sign different documentation for isolated small bowel. (We signed the liver/bowel paperwork our first day.)
We talked with her a little bit more about how to pay for the flight when a transplant offer came. They would love to find a way to get our insurance to pay for that flight, and we would too.. but we’re doubtful that they’ll play along. The worry is that sometimes you get false calls and if we use our COTA money for a flight and transplatn doesn’t happen, then we have no more money for another flight.
So – we will keep trying on that. And looking for another plan. Any of you readers out there own a plane and want to just offer to fly us at cost?
She then explained that 2 labs had been missed and asked us to run upstairs and have them drawn. We did that quickly and then made a stop in the medical records room to get copies of all the radiology done in the week. (Watch for that post later.)
And at long last, we took a very tired and overstimulated Patrick and left the hospital.
Brian had made a reservation for us at a Hampton Inn. Kind of a splurge, but nice for us. I felt a bit crazy for being excited to hear that there was a high school choir, wrestling team, and swim team staying in the hotel. Why? Because they wouldn’t mind if we weren’t quiet!
Patrick was happy to find a room that he could run around a bit crazy in. And we were all happy for the family to snuggle down in a king-sized bed with big fluffly blankets and pillows and take a nap together.
We woke just long enough to do dry the laundry we didn’t finish at the Lied, go out for some dinner (we drove up and down the street in the snow trying to choose where to eat for our splurgy night out), and shift around what I’d packed to make sure our bags weren’t, too heavy. I pack the bags to their weight limit almost every time we fly so there is a calculated balance of where things have to be going home.
And then, when it was all done, We snuggled back into bed, watched part of a movie, and went too sleep listening to the sound of someone else’s kid banging doors.
Patrick Hoopes 