Patrick Hoopes

Today didn’t go quite like I expected.

When I called Patrick’s surgeon’s office to schedule a consultation about his line, I wasn’t expecting them to say I could come in first thing this morning. But they did, so we got up, sent Brian to work, and then hurried to get ready and go to the hospital.

Brian met us there. I filled out a form that didn’t have nearly enough spaces for the answers to the questions they asked.

It was good to see Patrick’s surgeon again. He’s grown a full beard. That was a surprise.

We explained our concerns about the catheter of the line wearing out and passed along the recommendation to change the line over a wire. He read through the medical records sent from Nebraska and the images I’d brought along on a CD. And then surprised us by saying that he thought that Patrick probably had at least 2 good line sites in addition to the one his current line is in and suggesting it might be better to use one of those sites.

But none of the plans seemed especially straightforward. He was obviously brainstorming ways to optimize success in the face of a really difficult problem. The suggestions included making an incision to visualize the jugular vein better. Yeah.. that kind of trouble shooting.

Finally, after hearing a lot of semi-risky solutions, I asked “So, if we were just to try to repair this line and the repair didn’t work, could you still get a line into this site?”

The answer was yes. And so, rather than a surgery replacing the line, we went for the choice to repair the line.

But to be safe, he asked first that we go to radiology and have them do an x-ray to look for clots, kinks, breaks or other defects making the line problematic. And he sent us there right away.

So what I thought would be a quick consult turned into a longer visit and a trip to x-ray. Patrick was so brave! X-ray used to terrify him. But, seeing his hand x-ray has made him happier about that. I told him that an x-ray was a picture of his hand that showed his bones. Then I showed him the finished product. And it matched a flashcard picture he has of x-rays. And so they’re not scary anymore.

That is a nice surprise.

The radiologist gave us the all-clear, so we sent Brian back to work and I decided to go over to the ER and see how crowded they were and if they had time, space to easily repair Patrick’s line.

Amazingly, they were pretty quiet. Strange at 11 a.m. in RSV season. Even more surprising was that the RTU (rapid treatment unit) had availability to take care of it for us. (Yay! No $75 co-pay!)

They checked us in quickly and Patrick was happy waiting for them, so long as he had Tubes (his mini-me doll). Tubes was very cooperative with lots of pretend diaper changing and even took a trip to sit on the potty.

IV team, who repair the lines, came and said they were in a hurry. That kind of bugged me. You don’t rush things related to Patrick’s line. However, it worked to our favor because when I confirmed that Patrick would indeed be too wiggly for me to restrain along, the nurse went and got some 5 or 6 other nurses AND a child life specialist who came with an iPad and Talking Tom, Patrick’s favorite app.

The repair seemed to go really smoothly…. except for one little problem with the the tiny little metal piece that holds the repair together. It slid in as she went to connect things together. But she was able to use some hemostats to pull it back out. Not bad.

So we left our house at 8:15 a.m. We returned at 2:30 p.m. I’ll find out if the repair is holding well and dried in the morning.

That meant a late nap for Patrick. Again. Poor kid was exhausted.

While he slept, I returned several phone calls. One in particular came from a man who coordinates Angel Flights in our area. I talked to him yesterday and asked if he knew any private jet charters. He talked to a pilot friend who found 2 willing pilots.

I spent a good part of my evening e-mailing those pilots to get more information. Just finding someone happy to help if possible made me feel a little better. Hopefully they’ll get me pricing today.

Now, I’ve rambled on about my day and left the information you may have been waiting for till here at the end.

If you were thinking that the transplant team met to discuss Patrick’s case today, you are right.

They called me late in the day with the results of that meeting.

Another surprise.

After much discussion, they decided that although Patrick’s liver looks good on paper, that there are a lot of little evidences that it may be more scarred than it seems.

So, instead of just an isolated small bowel transplant, they are recommending him for a liver/intestine (a.k.a. multivisceral) transplant.

Actually, they will transplant the pancreas, too. It’s part of the package. And because of all the organs they will be transplanting, there is a greater chance that they’ll need to remove Patrick’s unhappy spleen. The spleen can take some of the vessels of the stomach, too.. and so sometimes they also lose the stomach and even the g-tube.

This is apparently normal, not decided until the moment of transplant… and not a big deal medically.

The pros about this type of transplant is that transplanting the liver with the rest tends ot protect the donated organs against rejection.

The bad news is that it means that now we’ll be competing not just for intestines, but for livers. And Patrick’s liver doesn’t look so bad on paper, so it probably won’t get a very competitive score.

Also, it means that if Patrick’s body rejected the intestine (I guess rejection usually starts in the intestine) they’d have to find a way to save the liver. I guess rejection usually starts in the bowel. The liver could survive. This is a better prognosis than I had previously heard. However, it does mean that a lost intestine wouldnt’ mean freedom from anti-rejection drugs while waiting to retransplant.

Anyway… this biggest surprise kind of threw me for a loop. I did tell them to go ahead and keep working to get Patrick listed.

But my mind is having a hard time wrapping around this news. And worse yet, I realized this afternoon that maybe there’s a reason that I don’t worry as much about these things as it often seems I should. Because I didn’t really have a down minute between getting the news and going to bed. I honestly haven’t had time to work out how I feel about it. I get slammed with all of these big things to think about, but between sorting out the medical logistics and taking care of an extremely active toddler, I don’t have those quiet moments to ponder in. The problems just roll around in my mind while I try to do other things.

I do know that things continue to come together. And I hope I am right in seeing that as a sign that things are moving in the right direction.

I’m hoping I’ll feel braver after a good night’s sleep. And that tomorrow holds no big surprises.

Well, we’re home but still busy with transplant evaluation business. Yesterday morning, we got a call from the transplant coordinator saying that the team had been thinking that perhaps the reason that Patrick is running out of IV sites so quickly is because of a blood clotting disorder. They asked for another set of labs. Another 20 cc’s. That makes about half a cup drawn in a week.

We decided to have them drawn at our local hospital just to make sure that they were all processed as correctly as possible. But we waited till late afternoon so we could still fit in a nap and a hockey game first.

And we took the opportunity to have dinner with the mom of a little boy who just lost his intestines, becoming Short Gut, just last week. How strange to be the “experts” when it seems so recently that we were just as new and scared.

This morning, Patrick finally got to go back to school. He was so happy about it that when I met him after his nap, he shouted “School Day! Yay!” and threw his hands in the air. It was an extra treat that he had valentines waiting for him, so it was like all his friends wrote him welcome back notes.

While he was at school, I went to a dentist appointment for my TMJ and scheduled appointments with Patrick’s surgeon and GI.

While he napped, I talked to his insurance case manager, sorted out an error that had all of our transplant evaluation being billed to the wrong insurance company, and started research into charter flight options to Omaha.

UNMC gave us a travel window 2 hours shorter than Seattle’s and they are slightly farther away. So while a charter flight was close on the way to Seattle, it’s just barely feasible the other direction.

That’s not to say it isn’t possible.. But I learned today that there are a whole lot more logistics that go into a last-minute flight than I had considered. Not only does there need to be a plane in town and available, but there needs to be a pilot (who can’t be in a government mandated rest period) and a flight plan. That all can take 2 hours or more, and then there is the time of the actual flight, which depends on the size of the airplane.

It’s tricky stuff and may require more than company in my cell phone to pull off. It may even take an air ambulance. However, that could be good news. It might be enough to convince the insurance company to pay for the charter.

Tomorrow morning we’ll meet with Patrick’s surgeon here at home to talk about his touchy central line. I already called the University of Nebraska and had medical records sent. Tomorrow afternoon, the transplant committee meets to discuss Patrick.

So no, I didn’t get the laundry done and I barely got dinner made and Brian spent the day buried in work and church assignments that fell behind while we were away.

One of these days we’ll find a new normal again.

Patrick had a lot of tests done this week. Here are a handful of the images that were taken.

Here’s a shot of just his intestines

And here is his entire digestive tract.

This is a venogram of his right side showing scarring and collateral vessels. They tried for a couple of hours to find a vein to see the left without success.

But his is my favorite. It’s a bone age study of Patrick’s hand. It shows normal bone development, but the beginnings of bone deterioration as his body is stealing calcium for the bones to make up for nutritional deficiencies.

Some mommies got handprints made of ink or paper or even clay this Valentine’s Day. I got this. And a memory of Patrick proudly holding still, grinning, and making a camera clicking sound as the x-ray took a picture of his hand.

It’s better.

Our last day in Omaha started out far too early. We decided that rather than inflate the air mattress, that since naptime had gone well with all of us in the king sized bed, that we’d let Patrick sleep there overnight as well.

But around 4 a.m. I noticed a small wet spot that I couldn’t find a source for. And by 4:30, Patrick was waking. He tossed and turned and couldn’t get settled. It turned into quite the battle that finally we gave up on and Brian decided to take Patrick out for a walk. At that point, we discovered that his g-tube had gotten disconnected and was leaking all over him. No wonder he wasn’t sleeping. Brian kindly took him to play for an hour so I could sleep a little more.

But we still had one crazy overstimulated kid for the morning. So much for not having to worry about bothering the neighbors. We bathed, dressed, finished packing up, grabbed breakfast, and made a quick retreat from the hotel.

We decided that with Patrick feeling so wired, we needed to have a quieter morning. So, we decided to drive back out to Council Bluffs to see the Kanesville Tabernacle while they were open.

What a great way to end our trip! First of all, I learned a whole little piece of church history that I didn’t know. Brigham Young, the second president of our church, returned to Council Bluffs (then known as Kanesville) just a few months after leading the pioneers into the Salt Lake valley so that a conference could be held to sustain him as a prophet and president of the church. He got there the 1st of December, but there were too many people to fit in any of the existing buildings. So, President Young asked for a building to be built. That was the tabernacle. 1000 people attended the conference in this awesome little log structure.

Anyway… that’s the brief history. Here’s the story of how it affects us. We arrived at about 10 a.m. and found a couple of senior missionaries shoveling the snow that had fallen overnight. By the time we were out of the car, they greeted us at the gate.

My favorite line was that right after we explained why we were there, he told us, “You are in the right place.”

He and his wife gave us a tour of the grounds and showed us a couple of movies about the history of the place. Another important thing about Council Bluffs is that it is where the Mormon Battalion left from. (And boy did I learn a lot about that, too.) So the tour includes the story of some of the families who made the brave choice to send their husbands and fathers off to support their country while wives and children stayed behind in Iowa, or in many cases, packed their wagons and headed across the Rocky Mountains to Utah.

At any rate, it was an especially poignant reminder that our family is not the first to be asked to do hard things, sometimes even in different places. And of how the Lord sustains his children through hard times.

Visiting this spot on an icy, bitterly cold February morning gave me an even greater appreciation of all that the pioneers sacrificed for the gospel and for their families. (They were driven from their homes in Nauvoo in February and made their trek across Iowa in the cold, wet, and mud.) And it gave me a little more courage to seek Heavenly Father’s will for our family and trust in Him to watch over our journey.

We went from Council Bluffs back to the airport. With a little benadryl to seal the deal, Patrick slept for the entire flight home. Just snuggled down next to me and said “Yes, sleep,” closed his eyes and stayed asleep.

We have had a peaceful, spirit filled Sabbath day today. It was nice to have a chance to discuss as a family all that we learned this week and talk about our options going forward.

At church, Sunday School talked about revelation and the spirit and how God talks to us. And in Primary (children’s sunday school), sharing time was about the miracle that is our bodies. Friends reached out to us, welcoming us home and offering support.

We ate homecooked food. We napped. A LOT.

I have a goal to get back to the blog tomorrow and write a summary of what we learned this trip.

But for now, in answer to the question we got most often today..

We don’t know yet what we are doing. We have some ideas of which way we are leaning, but the transplant team in Nebraska meets on Wednesday afternoon to discuss new transplant candidates and we can’t really make any choices until they come back to us with their official recommendations.

In the meantime, we are talking and pondering and praying for direction on what is best for Patrick. (Our visits to these historic pioneer sites were enough to help me get myself out of the picture and ask what is best for our little boy first and foremost.)

And right now, the biggest help that we can ask from you is that you’ll join your prayers to ours. Please help as we pray to know which choice to make that will be in Patrick’s best interest.

We have seen the miracles worked by the faithful prayers of you, our friends and family. And right now, as we are somewhat scared of what may be coming and feeling just a little overwhelmed by the magnitude of this choice, we could use that strength again.

Thank you again for all of your love and support.

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.

We had an amazingly quiet hospital night last night. That is something I could get used to. After Patrick’s 12 a.m. vitals, they left us alone until morning. If the bed’s mattress hadn’t kept adjusting itself to try to balance out two people sleeping there instead of one, we wouldn’t have had anything to disturb our sleep.

Not much did, anyway. Only 6 a.m. when the nurse came and woke me so I could draw Patrick’s labs. (I’m not letting anyone else access this line while we’re here. I don’t want to risk breaking it.) And then she insisted on having a diaper change to chart nighttime urine output. Silly people. Adults don’t wake up in the middle of the night to go to the bathroom just so nurses can chart it. Why do they insist on having that for children?

Amazingly, though, when we finished, I asked Patrick if he wanted to go back to sleep, he said he did. We dozed off and on for another hour, then he decided to be awake, even though he was obviously still exhausted.

Oh well. We had tests starting at 8:30 and that barely gave us time to get ready and get down there on time.

Patrick had an Upper GI with follow-through this morning. That means that they put contrast in through Patrick’s g-tube and then watched it on x-ray until it had moved through to his colon.

This test has always gone very quickly before. Patrick had “good peristalsis,” or squeezing movement, even with his dilated intestine. Today, that wasn’t the case. His duodenum didn’t really squeeze at all. Just let gravity move the contrast through slowly. Perhaps this is why his motility is still bad after his tapering surgery?

Anyway, the slow motility meant the test was slow, too. I did my best to entertain him with signs and songs. He wasn’t very patient with it. But we got the results we needed, and better yet, he wasn’t unhappy, either, so I could watch the images as they took them this time and understand, now, what I was seeing. Makes a whole lot more sense now.

And Patrick was thrilled that they gave him the chance to be transported in a kid-sized wheelchair. He has wheelchair-bound friends at school and that made him feel like them.

After that test, we went back to the room. We’d told them we had appointments later in the morning and asked if they wanted us to go to them from inpatient, or to discharge us early. Amazingly, they called down the nurse practitioner and she whipped out a discharge in just the time we spent downstairs in radiology. I’ve NEVER been discharged that easily or quickly from the hospital.. certainly never before rounds without making plans the night before.

Better yet, they let us just take down the TPN they had running, switch it to our pumps, and take it with us. (Something almost unheard of at our home hospital.) While we did that, she explained that their standard protocol is to let patients run their home TPN or to spike the bag of TPN they brought in with them while waiting for a new bag to be made. What?! We have been fighting THAT policy at home for 4 years and still losing.

Anyway, we got out with time to come up to our room and unwind a bit before our next appointment.

That was with one of the hospital psychologists. Her job was to interview us to make sure that we were capable of caring for a transplant patient, and that we really understood what that meant. One of her questions was whether or not we’d been surprised to hear that our son’s life could be prolonged when we got to this hospital. I don’t think she’s ever heard a “no” to that question before. But I know they don’t often have patients come to them who are stable and doing well with their treatment at home. And they certainly don’t often meet parents who say, “We don’t know how long or short our child’s life will be. But that’s part of what we signed up for, and we don’t mind not knowing.”

Anyway, thankfully we got out of that meeting a little early and there was a little time to let Patrick grab a nap.

Our next appointment of the day was with an occupational therapist. Her purpose was to make recommendations on what kind of therapies Patrick might need to learn to eat after transplant. I loved meeting with her! She totally got Patrick. And she got that we have been doing a lot for him by way of therapy. We talked about what he is eating, what therapies we’ve tried, and the setbacks that his brain injury and short bowel syndrome have caused him.

While we were talking, Patrick decided to buckle and unbuckle her belt. Not the best game to play, but rather than being bothered by it, she watched how he worked with it and then said, “He doesn’t seem to know the right amount of force to use for this kind of task. His proprioceptive skills, or awareness of self, seem a bit behind.” That made me so happy because proprioception is one of Patrick’s BIG challenges and something that we regularly work with in therapies of all kinds for him. And for her to see that in something so small gave me confidence in who I was talking to.

She then went on to say that, based on the history we’d given, and that observation, she was going to express to us an out-of-the-ordinary recommendation. She was going to recommend that we consider NOT using the Intestinal Rehab Program’s world-famous feeding program to teach him how to eat. She said that the technique just wouldn’t match Patrick’s needs.

In large part, Patrick has a hard time eating not because he is inexperienced with or unwilling to eat, but because he has a difficult time coordinating his movements in order to eat without fear of gagging or choking.

She recommended that we request that an occupational therapist do feeding therapy for him instead or in addition to that program. That way, his motor planning issues could be addressed, rather than trying to force him to eat and expecting that when he became more used to it, he’d be more willing to do it.

She also talked to me about how to get Patrick therapy services through the school district here. And when I asked her if his IEP could follow him, she grinned from ear to ear and said, “I love talking to a parent who knows this language.” So often she deals with parents of babies, not parents who’ve been actively seeking therapy for years.

This may have been one of the more useful conversations we had all week.

That visit was so quick that we had a very rare hour and a half break. We came back to the room and Patrick and I made paper and sticker valentines while Brian caught up on some work and phone calls.

Then we went to our last stop of the day, the vascular lab to have an ultrasound and doppler of Patrick’s veins to look at IV access from that angle, too. Patrick was AMAZINGLY cooperative. The test was over in less than 10 minutes. I’ve never had one so fast and can’t decide exactly what that means.

Patrick was so exhausted when that was all over, though, that he couldn’t stand being in the room again.

Finally, we just went to our car and started driving. We drove to the far west side of Omaha and had dinner at Old Chicago. Patrick downed some marinara sauce there. He was so happy to be allowed to eat and drink again that he forgot the effect it could have on his poor little gut. Thank goodness for a well-stocked diaper bag.

And then, not wanting to go back and bother our neighbors too early, Brian found a replica of an early Mormon Pioneer tabernacle and a church visitor’s center across the river in Council Bluffs, Iowa. It was a half an hour drive, perfect to spend the rest of the evening. But it started to really snow as we crossed the state line and then the gates were locked, so we just drove there, looked, and then drove back. We’ll visit again someday if we can.

And now, we are headed to bed a little earlier than past nights and looking forward to not having an alarm set before 7 a.m. Hoping Patrick will stay asleep that long in the morning.

This morning, Patrick called for me at 3 a.m. I crawled into bed and snuggled him close to help him fall asleep. And then he started mumbling to me in his own little language. “Temple. Patrick little baby. Daddy. Mommy.”

Today is the 4 year anniversary of the day we took Patrick to the temple to be sealed to our family. We’ve been talking to Patrick about it this week. One of the things that has been difficult about this trip was that it meant breaking our tradition of visiting the temple grounds ON this day. And so having him start out the day remembering that I’d told him it was a special day meant a lot.

Before he’d go to sleep, he followed with. “Mommy, big loves!” Yes. He knows it’s something special.

The rest of this day was hard. Harder than it should’ve been. Patrick had some scopes and a liver biopsy today. That meant he had to have a shower this morning with antibacterial soap. Patrick is afraid of the shower and even though today he didn’t cry, he didn’t like it.

But, we got up early and managed to do that and get out the door on time for scheduled labs anyway.

Too bad when we got to the lab, the orders had been cancelled. Brian remembered that the nurse in pre-op yesterday said that the team decided they didn’t need any additional labs drawn before the venogram and had cancelled them. Oops. Cancelled the day’s transplant evaluation labs instead.

So we went to breakfast and as soon as the office opened, called to let them know about the mistake so they could get the orders back in. We went for a walk and then back to our room. Patrick was obviously overtired from not sleeping off his anesthesia much the day before and was bouncing off the walls.

Finally, they called and said that the orders were in and that, if we hurried, we could still get things done and make our 9:30 appointment. So, we rushed over to the lab. They checked us in. They took Patrick back to get his vitals. And the fire alarm went off.

So we had to evacuate the floor.

We waited a while, but they didn’t let us back in, so we decided to walk around to the other building where our 9:30 appointment was.

That was fast. Basically, established that our insurance had told us the same things they were telling them about coverage and that we had a plan to get us to Omaha in 4-6 hours when the transplant call comes. (Charter plane. Yup.)

So we hurried back to the lab. I have been drawing Patrick’s labs because his line is so fragile right now.. So we just went ahead and got started before the nurse came in. (She didn’t seem TOO upset by it.)

And we finished to arrive to check in for Patrick’s scopes just on time.

Patrick wasn’t happy to be back in pre-op again. But, the nurse cared a lot about that and did her best to keep him occupied. Better yet, I knew what to pack for, so I had a much better collection of toys in my bag.

There was some fuss of some kind about the procedure. Someone was missing or something wasn’t communicated. I don’t know. But they pulled it together and started just half an hour late. In hospital time, that’s pretty on time.

The tests took about an hour and a half. Afterwards, the GI took us to an office to explain what he’d seen. It wasn’t much unexpected. Patrick has some nodules, or little bumps of irritation, all along his duodenum. Probably irritation from chronic bacterial overgrowth. Maybe something from his food allergies. He also has some irritation in his esophogus that could be from frequent vomiting. It sounded like that might be a little worse than before.

His anastamosis (surgical connection of small and large intestine) is still narrow, but not so much that it keeps things from passing through. It is enough that the dilation is starting to return to Patrick’s small intestine again. His colon, however, seems to have finally adapted to a somewhat normal size, instead of tiny and narrow like before. That is a positive change.

They took a lot of biopsies, including a liver biopsy, and it will take some time to have those results.

When they called us back to recovery, Patrick was pretty unhappy. We opted not to give him versed, his happy drug, this time and he woke up with some pain and without mom and dad and not happy at all about it. I hate it when he’s so inconsolable. It makes me feel helpless as a mother. It took some time and some pain medication and some lullabies to get him feeling better.. But after about an hour nap, once some of the air they use to inflate the gut to look around had been vented, he started to feel better. I let him play some games on my ipod and that helped a lot.

When the pain settled down, the nurse got ready to discharge us back to our hotel room. We explained that we’d been told we were staying.

(Livers bleed easily and an active boy after a liver biopsy is safest in a hospital. Besides, we wanted to get a feel for what it was like to be inpatient here.)

They resident had forgotten to order that and it took another hour or so to get things sorted out.

By the time they got us to the pediatric floor, we were taking their last room… A tiny little closet feeling space in the corner of “the old wing.”

The accomodations are not great. They are, however, no smaller than the small rooms back at our home hospital.

The medical care has been a refreshing change, though. We arrived late in the afternoon. A nurse practitioner from the transplant team met us to write the orders. (Note: NOT a resident.) She was so familiar with Short Bowel Syndrome that I could just tell her Patrick’s treatment plan and she understood it. No trying to talk me out of the things that have worked. No “We’ve never used an ethanol lock before.” Just a quick run-down of the plan.

Even though we arrived late in the day, they were able to get TPN made and hung by evening. (Later than I’d have liked, but that was a busy nurse..not the pharmacy or doctor’s fault for once.) They were able to get Patrick’s special replacement fluid made. They knew the names of all of his diaper creams.

There were a couple of medications that they didn’t have an equivalent for. We opted, since it was only one more missed dose to skip them… But they didn’t bat an eye when we said we wanted to use our home melatonin to help him sleep through the night.

It was one of the easiest admissions in my memory. In fact, it’s been kind of nice to not feel like I need to teach the nurses how to take care of us. The nurse who admitted us said “These Short Bowel kids, they’re what we do here.”

The rest of the evening was kind of blah. Patrick, thankfully, was quite cuddly and didn’t fight being kept in the bed. Child life showed up quickly and brought us cars and blocks and Candy Land and that, plus some of the things I brought, has done quite well to help pass the time. He played with my tablet for quite some time, too. (Then threw it and cracked the screen. Thank goodness, Brian reminded me, we bought accident protection on it!)

A good friend of mine from college came to visit this evening. He lives a couple of hours away, noticed that I mentioned we were here this week, and happened to be driving through at that time. So he came up. What an unexpected treat to have a visitor!

I have kind of a melancholy feeling tonight. The hospital is quiet and they’ve left us mostly alone. I should be happy about that. But I think the long day has worn on us. And seeing Patrick not feeling well has worn on us. And the reality of the idea of needing a transplant and living in the hospital for months is starting to sink in to us.

And the room is old and small. And the pumps are different and the monitors are different.. and they sound like the ones in surgery and in the ICU back at home. The alcohol wipes don’t seem wet enough to me. The prefilled syringes all have needles on them, which seems wasteful to me. They wanted to put a giant “Ethanol. Don’t flush!” sticker on Patrick’s line. The medication syringes are orange instead of clear. There aren’t enough fun foods on the room service menu. Even the way they connect the tubes to the claves is different.  In other words, it’s not home. And we all know how well I deal with change.

So tonight, I’ve got a little bit of the transplant evaluation blues. But thankfully, I get to go cuddle with my little boy in his bed all night long! I’m not even gonna bother making up the parent bed. We both need the cuddles. And meanwhile, Brian is back in the room hopefully getting a quiet and good night’s sleep, in case we don’t. Labs at 6 a.m. tomorrow and more tests at 8:30 a.m.

Tonight I’m tired. Not that “wow, this sudden burst of so much excitement” kind of energy that we had during the first days of being here. Today is that “it seems like I’ve been marching this march a long time” kind of tired. Given that today is only Tuesday, I’m not sure that’s a good thing.

Last night was a better night. Patrick only woke once at 1 a.m. and I only had to sleep in his bed a couple of hours before returning to my own. We were all up right at 6 a.m. though and hurrying to get ready and out the door on time.

Again, we started our day in the lab as soon as they opened. Today, Patrick saw a drawer full of lab tubes and announced “Nurse ‘got (forgot) tubes.” She looked to me for explanation and I told her that his home nurse brings him a lab tube every time she draws blood. So, she gave him one. Then, while I worked to get a very finicky line to draw, she just kept giving him tubes. He walked out with 4 in the end.

Next, we went for an appointment with the Intestinal Rehabilitation clinic. This approach is the alternative to transplant.. trying to reteach remaining intestine in order to wean away from TPN and not have the complications that lead to a need for transplant. We expected a pretty full room. This time, though, we got the nurse coordinator for the clinic. That wasn’t bad. She’s been at this a long time and definitely knows her stuff.

We kind of went over Patrick’s current treatment plan. Hours of TPN, infection history and what we do to try to keep them away. What he’s eating. How his intestine has adapted and changed over time. What we are doing for his liver. And so forth.

In the end, she said that she didn’t really see anything that we were missing.  Dr. Jackson is already doing all the things that they would recommend. In fact, everyone is amazed at how strong and healthy and robust of a little boy he is.

She explained that they don’t really considering just wanting to be off of TPN an indication for transplant. However, in Patrick’s case where access for IV’s is a big concern, that might be what tips the scales.

However, because he IS currently so healthy and so active, because he has had a good team caring for him all this time.. if access really is a concern, now would be a good time for a transplant. He’s big enough that finding a match should supposedly be easier and so should the surgery. And, because he’s such an active kid, they usually see kids like him up and going again soon after the surgery.

It is very refreshing to me to hear them frequently reminding us that they aren’t going to rush into transplant sooner than medically necessary as my heart just hasn’t felt right about pushing that too early, either.

We did talk about some of the ways that short bowel syndrome is taking it’s toll on Patrick’s body. We looked at elevated platelets, a sign of an injured spleen and sick liver, despite other markers that say his liver is hurt but ok. (Did I mention that they said sometime yesterday or today that they often remove enlarged spleens at the time of transplant to make room for the transplanted organs? I guess there is just a medication you take to make up for it’s absence.)

We talked about how x-rays show that Patrick has a normal bone age, but is starting to show signs of calcium deficiency robbing calcium from his bones making them a bit thinner than normal.

We talked about bacterial overgrowth, the imbalance of gut flora that sometimes can make Patrick quite sick.

We talked about infections and lines a bit. And she played with a rowdy, sleepy Patrick a lot.

And then sent us on our way.

We headed upstairs to take advantage of the opportunity to grab some breakfast. And, just as we were finishing, Brian noticed a voicemail left on our home phone number. It was the clinic asking us to come back to meet with a GI.

So, we hurried back downstairs, just 10 minutes after they called for us. Started off by explaining that they still have my phone and cell phone numbers swapped.. and then hurried to meet Dr. Quiros, the GI.

He did a quick exam of Patrick, who strangely was afraid of him. Then, he explained that he’d be the one doing Patrick’s scopes and liver biopsies tomorrow. We talked about what to expect there for a while and I warned him about some of the quirks in Patrick’s anatomy.

Yesterday’s imaging showed a lot of change in Patrick’s anatomy. His intestines seem to be adapting in good ways, but also developing again some of the dilation that has been problematic for him. So we discussed some of the strategies that could be used to help with that problem.

Again, we were reminded that when they list patients for transplant here, they usually find a donor within about a year. My mind is having a hard time wrapping around that. But they also pointed out that they weren’t certain it was time yet for that fast of action, and that the rest of the tests would tell. It seemed like kind of a quick visit.. But it was good to talk about our hopes and questions for tomorrow’s tests.

At 10 a.m., we walked over to another section of the hospital to check in for Patrick’s venogram. This is a special test that they did to find out just how difficult Partrick’s central access problem is. (That is IV’s that go to the heart.)

We checked in, then took Patrick to wander a bit while waiting to be called back. They came to take us upstairs 15 or 20 minutes later. We settled into the pre-anesthesia unit where we went over his drug list and allergies and other key points in his history with a nurse. We got him changed into a hospital gown.. And then we got a call to tell us that the anesthesia team was running a bit behind and we might need to wait an hour.

While we waited, a few people came to talk to us about what was going to happen. A physician’s assistant came to fill in some gaps in his medical history and explain the planned test to us.

Next, anesthesia came down and we talked about our usual concerns. We also emphasized that Patrick doesn’t like to wake up without us and they promised to bring us back quickly.

While we were having that conversation, a man stopped.. put his hand on Brian’s shoulder and shook his hand like he knew him. Then he said, “You don’t know me.” (Whew!) He went on that point out that he recognized us from church on Sunday. We hadn’t met, but he wanted us to know that he’d seen us and that he worked at the hospital, also in anesthesia, and that he would be watching out for us in the future. Kind of a relief after dissappointingly not being able to meet anyone in church on Sunday. (We kind of thought that with the ward merger, we’d slipped in and out fairly quietly.)

Anyway… About noon, they finally came to take Patrick back to interventional radiology. The plan was to put contrast into Patrick’s veins and track their path back to his heart to see what veins were still open and available.

At 1:30, the nurse called us to explain that they were having difficulty getting an IV into Patrick’s left hand to put the contrast into.

At 2:30, we started to get really nervous. Brian went to grab lunch so we’d be ready for whatever was coming, and I started to get worried.

But, thankfully, just as we finished eating and were getting ready to go ask for help, they finished. The radiologist came to talk to us and explain the results.

She told us that really Patrick’s right side is quite open, all except for about a 2 inch segment by his shoulder that is completely scarred over, making it impossible to get to his heart on that side.

On the left, they never did succeed at getting a good iv in. His poor little arm is all scarred. They said that, from what they could tell, the best and maybe only access was the vein where his current line is. She said her recommendation was to just never take a line out of this vein, if possible. If it needed to be changed, change it over a wire to make sure that vein stayed open.

Yipes! In other words, we have been babying this line like it’s Patrick’s last. And it’s possible that really, this line location may be the last available. There is a slim chance that the jugular veins are still accessible. I don’t understand if this test answered that definitely and can’t wait to review this test with a surgeon later in the week.

Not long after, they proved that they listened to our requests by calling us back for Patrick long before he woke up. We had a nice visit with the post-anesthesia nurse while we waited for him to wake up.

Finally, Patrick sat up quite unsteadily and declared himself awake and asking to go to walk. He was quite tired and nauseous for the next several hours.

One of the SBS families that I know from our group came up to visit us in our room this afternoon. Patrick slowly woke up while they were here and, when he felt well, was very excited to have a little boy to play with. It was a great way to wrap up the afternoon.

Then, because Patrick was bouncing off the walls, we gave into another request for a walk and went and grabbed some dinner, unpacked the TPN that arrived by fedex today, changed a central line dressing (they soaked this one in betadyne for some reason), helped maintenance fix a clogged pipe (yup, that followed us here).. and then tucked Patrick into bed.

And now, with my laundry just about to finish drying, I’m going to wrap up this post.

Obviously, Brian found a way to get me an internet connect for an evening blog post. Don’t know if I’ll get to this tomorrow evening, though, as we’ll be spending the night inpatient.

Patrick is snuggled down safely in his bed after a busy, but good, first day of transplant evaluation.

It’s been a busy day, but better than I expected.

We had to get up early to get to the lab on time. But that wasn’t as hard as I thought it would be because, well, I was wide awake by quarter to 6. Thank goodness for going to bed early!

Labs went smoothly… only delayed by a late receptionist so we couldn’t check in. But the lab staff didn’t hesitate to get started while we waited. Better yet, they were more than willing to let me draw the labs to help protect Patrick’s line.

We headed downstairs to radiology next. They confused us by doing the tests out of the order that we’d been told, but other than that, it was smooth. Patrick wasn’t happy with the ultrasound, but did his best to hold still and cooperate. All staff were very kind and even kind of spoiled him. (10 stickers and a can of playdoh?). Then, we went for some x-rays. He saw that room and didn’t know what was happening and just started to cry. He didn’t want to let go of me, but once we explained and he saw that I wasn’t leaving, he relaxed. By the time the got to the “bone age” x-ray of his hand, he was actually kind of having fun.

The last test was a barium enema. That one is uncomfortable and very embarassing. The poor kid just sobbed through the whole thing. But then, in true Patrick fashion, was up charming the technicians minutes later. It was very interesting to see how Patrick’s intestines have adapted. I can’t wait to hear the doctor’s interpretations of what we saw on the screen.

We had a little time to grab food, but Patrick, for as tired as he was, didn’t want a nap. So, we grabbed some chinese in the cafeteria and let him play in the room. Then headed downstairs to meet the transplant coordinator. (Did I mention how nice it is that the appointments are literally an elevator ride away? One bonus to where we’re staying.)

We spent a little over an hour going over the transplant rules, risks, etc. Most of it was the same as what we’d already been told. It was encouraging to hear better survival rates. One thing that stood out to me was that we asked the team how often they wanted to see us while we waited for transplant. They were kind of confused.. Because they so rarely have a patient wait longer than a year, they don’t usually need pre-transplant checkups.

They talked about wanting copies of labwork done by our home hospital so they could watch for opportunities to improve his transplant listing status. And the talked a lot about what recovery is like. That is always difficult to imagine and think about. Recovery, immune suppression, infection, ostomies, biopsies, and on and on. That is what scares me. But they sound confident about a plan to help Patrick have as much opportunity and normality as possible.

We managed a nap before the next appointment, which was with the transplant dietitian and really uneventful. Really, the only news is that they think our home team is doing a great job with TPN, that we are doing the right things with feeding and diet for now, and that no, Patrick’s liver doesn’t seem to need omegaven.

With all of that done, we decided to sneak in a little family break. We packed up quickly and went to the zoo. We heard great things and it lived up to expectations. The aquarium had Patrick fascinated. The desert exhibit was impressive. The cat house was as boring as Patrick thought it would be. (He kept yelling “No tigers. Apes!”) And he was right, face to face time with the orangutans, and then the gorillas and monkeys, was much funner.

We couldn’t find the bears and were less than impressed by the lemurs, when we realized that Patrick’s monkey pacifier was missing. The buildings close at 5 p.m. and it was 4:55, so I ran to retrace our steps and found it in next to the orangutans. Just on time. But the run up the hill was enough to wear us all out, so we called it quits at the zoo.

We decided to go looking for dinner the old-fashioned way without GPS. We drove through downtown Omaha and found a neat little bakery/coffehouse place where we had some yummy sandwiches, hot chocolate and cider. Better yet, we found our own way back to the hospital without GPS.. and found that the coffee house is only a few minutes away.

Patrick was awake itchy most of the night last night, so when we got back we picked up some hydrocortisone to go with some baby lotion that a kind radiology tech snuck to us. So we gave Patrick a shower. (He is terrified of the shower in the hospital.) And then had a little spa time where I rubbed him all over in lotion, put cortisone on the worst rashes.. then put on his pajamas and snuggled him to sleep.

And now, I’d better hurry off to bed, too. These beds are still a little too small. The double bed is too soft, and the single bed where Patrick is sleeping is too hard. I spend the night going back and forth between the two. It makes the nights extra long.

I apologize for being so late in blog updates. It turns out that there is no wireless internet access in our room and my stubborn computer won’t connect to Brian’s phone hotspot.

Today is the first time I’ve had quiet time inside of the hospital’s wireless network. So, last night I sat down and wrote some blogs of the past couple of days and today I can finally publish them. Here goes: Omaha Days 1 & 2.

 

We arrived very late Saturday night. Because of a snowstorm and an evening departure, we spent an hour and a half in our plane on the tarmack waiting for our turn for de-icing. We finally got in the air, but because of weather, it was a very rough flight. Thank goodness Patrick did very well for the whole flight and in taking care of Mommy.

Because we were late, it took some extra time to get the rental car and then to get into our room in the hospital’s hotel-style housing called the Nebraska House. We checked in around 10 p.m. Then Brian started the journey to move our luggage from the parking lot two buildings away while I tried to corral Patrick and unpack enough to get ready for bed. The room is a decent size, though the beds are tiny and the pillows, hospital pillows. The whole room is a strange mix of hotel and hospital that is sometimes depressing and other times really helpful. (Sharps container in the room, cool. Pedal operated sinks, not cool. Handrails all over the bathroom that double as towel rods. Cool. Hospital style shower with low water pressure, not cool. Extra big fridge and 3 sinks. Cool. Hospital pillows on the bed. Not cool.)

And, in order to maximize storage for people who stay here a long time, the walls are lined with cabinets and drawers. For a tired Patrick, this is a wonderland. For our neighbors, not so much. We got a call early the next morning letting us know there were several complaints about Patrick banging the cabinet doors while I tried to unpack late at night, and we’ve been working extra hard to keep things quiet and polite since. (Thus teaching us that this is NOT the right place for Patrick to live post-transplant. A first reminder of the fact that this is an adult hospital, not a children’s hospital… and the Ronald McDonald house, which is made for children, will likely be a better fit and somewhat of a refuge when we need it.)

The night was late, and the next morning Patrick woke early. We were definitely overtired. But, we knew we needed to get out of the room until we all got caught up on some sleep and Patrick wasn’t going to have any early napping.

So, since it was Sunday, and because this week is the 4 year anniversary of the day we took Patrick to the temple to be sealed to our family, we headed over to the Winter Quarter’s Temple.

Winter Quarters is a historic site in our church. The Mormon Pioneers stopped there for the winter on their trek west from Illinois to Utah. There is a cemetary there, a new LDS temple, and a visitor’s center.

So, we went over to the visitors center and the missionaries gave us a tour. What a sweet start to the Sabbath day and a refreshing dose of the spirit after a difficult arrival in Omaha to have a sweet young Sister Missionary, a servant of God, bear her testimony about our Heavenly Father’s love and how he helps and supports us through our trials. She had gone through many medical difficulties herself as a child and shared with us how grateful she had been for parents to help her through scary medical tests. And as I stood in a replica of the log cabins pioneers often lived in with 8 or more people, often 2 families together, I decided that I could make peace with an unfamiliar, but very comfortable, hotel room and hospital far from home.

After stopping at our room for a very short, but much needed nap, we headed over to church. The ward (or congregation) assigned to the hospital is about 15 minutes away. We barely got there on time because we were trying to let Patrick sleep as long as possible. The parking lot was crazy full and so was the chapel.

It turns out that they had just changed the boundaries to combine two congregations. It was the first Sunday they’d had a chance to meet together normally. So, while it was nice to take the sacrament and hear the messages taught there, with Patrick overtired and a brand new primary presidency trying to start classes for a brand new primary, we opted to skip out early.

Besides that, our late arrival had left us without the opportunity to make good plans for food on Sunday. Normally, we’d hit the hospital cafeteria, but they all but close on Sundays. And first, we weren’t hungry. Then, we were trying to fit in sleep. By the afternoon when sacrament meeting ended, we hadn’t eaten yet. So, we skipped out and grabbed a much-needed dinner.

And then we came back, got ready for a busy morning, and got to bed early. I didn’t sleep much those first couple of nights. Too many worries about the day to come and not feeling very at home.