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I am so sorry for all the bland text-only posts of late. With time limited and internet access limited when I was blogging, I didn’t put any in what I was writing. So here’s a makeup post with pictures from our trip.

Here is Patrick with a Penguin at the Omaha Zoo. Because he was tired and cold, Patrick insisted on staying bundled under a blanket with his coat on and my gloves on, even inside warm buildings.

He wouldn’t even come out for the faux desert.

But he did come out for this friendly orangutan. Sadly, that is also where he dropped his paci that we didn’t miss for 3 more buildings.

Here he is competing for position as silliest monkey. Moments later, these monkeys got angry and charged the glass, baring their teeth.

That night, we stopped at a European bakery for dinner.

Brian and I ordered soup and sandwiches. Patrick tried to order a banana. We told him they didn’t have bananas and sat down. Then we saw the bananas and had to go back to buy him one. Bananas are his only safe fruit.

Then I lost my camera for the whole next day and didn’t take any pictures. Thankfully, I found it right before taking him for his liver biopsy. Brian has some sad pictures of recovery on his phone that I haven’t gotten a hold of yet. This one’s more happy. This is daddy and Patrick playing on the bed during the mandatory evening of rest. (So his liver wouldn’t just open up and start bleeding.)

The next morning, because there hadn’t been time to be discharged, we got to go for his upper GI in fluoro while inpatient. That meant Patrick got the chance to ride in the kid-sized wheelchair. That made his day. He feels just fine, but sure did dress the part of a sick kid well.

Here he is waiting in x-ray for the contrast to move through his belly. It took a long time and he definitely made us work to keep him entertained.

One of the better features of this hospital, in Patrick’s opinion, were the escalators.

After 3 consecutive days of mandatory fasting, we broke free from the hospital and went out for dinner. We ended up at Old Chicago where Patrick fell in love with the marinara sauce. (Which made a belly full of barium wake up, requiring a full wardrobe change.. But it was worth it.)

This was Patrick’s room at the Lied. We arrived to find the air mattress pump batteries had fallen out before I packed them. So we let him sleep on the twin bed.. By rearranging the headboard pillows a bit, we were able to make a decent bumper and he slept there all week. Alas, that means, so did I.

These are the valentines Patrick and I made.

And this is what breakfast looks like with a bored kid who’s not allowed to eat.

We kind of liked flying home through the Omaha airport. Security screens so much TPN that it was an almost painless procedure. We had plenty of time to play in a small but mostly empty terminal.

And then, because Patrick had gotten up at 4 and then refused a nap all the rest of the day, we slipped him some Benadryl as we got on the flight. He told me “Mommy, no sleep.” over and over again. Then the plane started to move, he mumbled, “Mommy. Yes sleep.” and drifted right off.

The answer is… Patrick’s throat!

And it’s been that way since at least Thursday afternoon. Honestly, I think he started getting sick at least as early as Wednesday. But Thursday is when I first noticed the spots.

I picked him up from school and he was telling me all about his day. I knew from dropping him off that they had a mock doctor’s office set up because their subject has been community and careers this month and he’d tried to go play in it. So I asked him if he’d ever gotten to and, in his own way, he launched into a narrative about how he and his other friends had played and he’d checked them all out with a stethescope. And then he said “AAaah.”

And, without any extra light, I spotted the spots. I grabbed my cell phone flashlight and made him show me again. Yup. White spots all over his throat.

So I finished putting him down for his nap, then called the school to tell them his class had been exposed. And I called the pediatrician to get him checked out.

Because white spots are almost certainly strep, I said “sure” when they asked if I’d like to see their Nurse Practitioner. After all, I only needed a strep test and some antibiotics, and they only have one form of injectable antibiotic, so it should be pretty straightforward.

It seemed to be. Patrick was angry and fought hard against having his throat swabbed. But with two MA’s, it seemed we got the job done. He certainly seemed to have that post-swab sensation in his throat, as moments after they left the room, he gagged at the memory and threw up green nastiness all over both of us.

But the rapid strep test was negative.

And because he wasn’t acting sick and didn’t have a fever.. and because injectible antibiotics are kind of a big deal.. the NP said that she didn’t want to treat something that wasn’t really there and opted to wait for the strep culture to come back before prescribing anything. She said it was most likely viral.

And so, we came and we cancelled all the rest of our plans, and we waited.

And the culture came back negative. And Patrick’s throat has continued to swell more and more each day. It’s a really good thing he doesn’t need to eat, because I’m really not sure he could. And when he napped today, he woke up with one eye all puffy and red for no apparent reason, and it stayed that way for a couple of hours and then got better.

And because sore throat bugs are actually all-digestive-system-especially-the-gut bugs and without an immune system, Patrick is lacking the crucial part of the immune system that fights those off, he has a very sick tummy that needs drained several times a day and is making me worry that it will get distended if I don’t keep it empty.

We are all going a bit batty from having to keep Patrick home in case he’s contagoius. We are all really wishing that we could do something, anything to help him feel better.

But, short of making him take all of his other antibiotics and antifungals by mouth in the hopes of them crossing his throat and treating something that way, I’m out of ideas for now. I mean, he doesn’t eat and he does’t drink so he can’t have soup or lozenges or herbal tea.. He most certainly can’t gargle.

He can just wait.

I was feeling rather overwhelmed by all of this this morning. Coming on the heels of our trip to Omaha, I just didn’t think it was fair. We were only just starting to feel normal again. And now here he is stuck inside again. And when we go out, it’s just to more doctors.

And I still haven’t had many quiet moments to sit down and process the information we gained on that trip and the doctor’s recommendations. I haven’t been feeling much peace or direction yet about the options presented to us.

And that is one of the tender mercies this illness brought for us. Because Patrick wasn’t able to go to church, Brian and I decided to take turns with church today. So, I snuck into the sacrament meeting of the other ward (congregation) that meets in our building. I got to sit all alone and take the sacrament, renew my commitments to Christ, and then listen to a wonderful talk by one of my very favorite men about our Heavenly Father’s Plan. (You know, where we came from, why we’re here, where we’re going. All things I needed reminders of this week.) He talked about trials and conversion and discipleship and resurrection. And I had a good little cry and regained some of my courage.

And then I came home with a committment to make sure my home felt like a temple and house of God for the rest of the day. Patrick and I even had a miniature primary lesson and played singing time.

Our exhausting, stir crazy, sick-at-home day was a bit of a day of rest after all.

Which is good, cuz I’ve got some serious momma bear work to accomplish tomorrow.

One of the pressing items I came home from Omaha with was charter flights. We had a plan heading to Seattle and it took some effort, but seemed good.

Omaha is a little different though. They are a smaller airport and so there aren’t bunches of commercial flights available during the day. There are only 2 nonstop flights that have even the remote possibility of arriving in time. And that is a long-shot, especially in the winter. And that’s assuming that there are seats open on the plane. Flying commercially can not work.

So chartering a flight is no longer a luxury, but seems the way we need to go.

But here’s the mathmatical problem that I have.

Omaha wants us there in 4-6 hours. (Instead of 6-8 offered by Seattle.)

It takes 2 hours for a typical charter company to call in a pilot, prep a plane, and make a flight plan. It takes 2 and a half hours to fly to Omaha in good weather in a jet.

Most charter companies only have a few jets on hand. Those jets must be in town at the time we need our flight.

When I called what was our preferred charter company to reprice the flight, they had no jets available at the time.

Furthermore, there must be a pilot available for the jet. If a pilot has clocked off shift, he is required to wait 10 hours before flying again. So if he flew during the day, clocked out, and went home.. he is not allowed to fly again till morning. So say he clocked out at 6 p.m. and the call comes at midnight, he can’t fly. Even if his plane is in town.

The cost for a charter flight to Omaha is in the neighborhood of $15,000-$20,000. We have to have this money available in advance.

Air ambulance companies have more pilots, eliminating the pilot wait period problem. They are also better at getting out quicker. They sometimes can assemble plane, crew, and flight plan in half an hour. They don’t have as many jets, but might be able to take a smaller plane because they can leave quicker.

They also require that you travel to and from them by ambulance. And that you fly with a full nursing staff. You pay for the medical staff. And the ambulances.

Life Flight in Utah quoted me $50,000. We would also need that upfront.

The other air ambulance company refused to give me a quote as they couldn’t promise that they’d have team and plane in place at anytime. They just gave me a whole long shpiel about how difficult what I was trying to coordinate was.

Yesterday, Angel Flight helped me find two pilots willing to help me work out logistics. They have been very kind so far. They are getting me quotes. This is probably the closest I’ll come to a charity flight.. But it won’t be free because fuel prices are just too high for that. I don’t even really expect them to be much discounted.

I need to get multiple phone numbers in my speed dial because no one can guarantee they’ll be available on a moment’s notice. So one company or pilot alone isn’t enough of a plan.

So now I need to take all of this information back to our insurance company. They have previously stated that they will reimburse the cost of a commercial flight, regardless of how we fly. But just for Patrick and me. I looked that up.  A last minute flight is $400/person. $800.

They have also stated that they’d pay for an air ambulance if Patrick weren’t medically stable to fly another way.

I’m hoping there’s a middle ground here where they’ll pay for a charter.

Especially as the transplant hospital has pointed out that even if use the money we’ve fundraised to pay for the flight (that would take most of what we have), that there is still a chance we’d get out there and there would be something wrong with the organ and the transplant could be cancelled. And then.. we’d have no more money for a flight.

But even if insurance covers this, I’ve gotta make sure my credit cards are gonna cover the flight while I wait for reimbursement.. Because payment is required up front.

This is what made me grind my teeth all night and wake up with a headache.

That and the fact that this hospital is recommending a very different plan than Seattle. So the choice between the two programs is even more glaring and a choice is more definitely necessary.

And soon.

I just keep working away at the many different aspects of this problem. But there is so much out of my control that I don’t ever feel like anything can be resolved until we get to the moment of transplant. I just keep waiting and praying to reach the point where I have that feeling of peace that says this will all work out, even if I can’t see how.

But I’m thinking that this morning, since that peace isn’t here yet, maybe I’ll just have to settle for some ibuprofen and some chocolate. Then take Patrick to school. And get on the phone again to see what more I can hammer out today.

But I needed to talk to someone about the problem. Get it all out of my head on paper. So thanks for listening.

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.