All of us will someday stand on grief’s shores — feel grief sink into the sand around our toes, loosening the ground we stand on. We may come early in life or later. Our visits may be brief, or we may live in a beach house. The ocean is vast and has plenty of shoreline. Grief is a part of life.
Water is, after all, life-sustaining — our very being. The ocean is simply life in motion.
The waves of the ocean don’t shift on their own. They form when a storm rolls in, when the moon replaces the sun, or when the very earth shifts. Grief can be a powerful force. It’s the sudden filling in of space formerly occupied by hope. It’s dreams breaking against cliffs. It’s love pulled out to sea and sent crashing back again with force.
At first, it’s standing on the beach with your back to the surf, being hit by a wave from behind, and being knocked off your feet.
Early on, small waves wash the sand from beneath your feet and knock you off balance. Big ones can threaten to pull you under.
Concerned friends may tell you to stay away. Grieve less. They worry the waves will pull you under. They shout this advice from a distance — lest they get sand in their shoes.
But they don’t understand that even if you leave the ocean, it never leaves you. The sea is in the clouds in the sky and the rain that falls. Grief, like the ocean, follows you.
You can’t pass through grief without feeling like you can’t learn to swim on dry ground.
If you’re lucky, you may, one day on grief’s shores, cross paths with a leather-skinned, barefoot beach-goer who’ll teach you how to plant your feet and face the waves. With practice, your muscles will get stronger. You’ll gain the strength to walk in the surf without losing your balance.
You’ll get tired. You may fall. The salt will sting your eyes. That’s ok. The same salt that makes you cry is a preservative. It adds flavor. It cleanses.
You’ll learn to read the skies and anticipate the waves. You’ll befriend the ocean, even if you’ll never tame its waves.
Ok. Technically, this is being written several days after day 3,653. That’s because we just got home from a week celebrating in Disneyland. That was Patrick’s pick, but there really isn’t any better place to celebrate magic, dreams, wishes.
This has been a really emotional week… month… fall?..!!
I always get nostalgic in October. This year, even more so, however. That has a lot to do with transplant. We took Patrick’s trip for his annual checkup early because we wanted to celebrate his transplant anniversary over his birthday. It just happened that we were there over the same week he’d taken his wish trip ten years before. Then, just a few weeks ago, my niece had a baby boy who spent 20 days in the NICU, so we have spent a lot of time in and out of that familiar setting again.
There have been a lot of reminders around what was already bound to be a very nostalgic anniversary.
Getting ready for our trip, I stayed up late wrapping Patrick’s birthday presents so he could open then in the morning right before we left. We’ve been so busy with work, school, family, and getting ready that I just ran out of time.
I try not to put off wrapping the presents. The night before Patrick’s transplant, I also stayed up late wrapping his presents because the week had been busy and I hadn’t gotten to it. I’d just wrapped those presents, gotten in bed, and switched out the lights when my phone rang and the caller ID lit up with the number of the transplant hospital. That number at 10 p.m. could only mean one thing… And I didn’t want to take that call on my little boy’s birthday eve.
Still, we packed the presents that could travel and we went.
I was so afraid to take that call. It was so scary to say yes, to pack our bags, to wake our little boy, and to fly all night to turn our little boy over to an uncertain fate.
Family photo taken just before Patrick went for transplant October 2014
One of the hardest things about intestinal transplant was that, with TPN, you aren’t actively getting sicker. You don’t see a child who is getting visibly sicker the longer they are on the transplant list. In fact, Patrick seemed so healthy. He was having one of the best years of his life. He was loving kindergarten.
Health doesn’t decline gradually with short bowel syndrome. The scary moments ambush you. Patrick would be fine, then suddenly, he’d have a fever and we’d be rushing to the hospital to be treated for sepsis. Or he’d catch his line and it would break. Or a clot would form so we couldn’t use it. We could go months in peace, but when things went wrong, we were rushing to the emergency department. Behind the scenes, he was running out of central venous access and the situation was getting worse. We knew one day, he’d run out of veins for the IVs that were feeding him, and that would happen with no warning. It was like living with a ticking time bomb. One that would alarm at random to remind us time was running down.
When he was not quite 5, Patrick ran out of major vessels above his heart where central lines could be placed. It happened suddenly. A doctor wrote the wrong concentration of ethanol lock. A line clotted. A nurse flushed too hard. Patrick went to surgery to have the line replaced and he came back without one. Upon hearing the news, the transplant team made him status 7 on the transplant list — on hold. Without access, he could not have a transplant. Two days later, we flew to Nebraska to have an alternative central line placed by passing a sheathed needle through his femoral vein and through his heart and out through his superior vena cava.
That’s when we knew that without a transplant, Patrick was unlikely to survive many more years.
A year later, just before Patrick’s 6th birthday, he was granted a wish by Make-a-Wish Utah and we took him to Disneyworld and Give Kids the World Village in Orlando. He’d been listed for a year and a half in Nebraska by then – 5.5 years total – with no match. He was on his second alternate line.
A month later, Patrick got THE call. A donor had finally been found.
That was ten years ago.
This picture was taken as we arrived in GKTW village for Patrick’s wish trip. Our villa and rental car are in the background.
We just celebrated Patrick’s sixteenth birthday. I never imagined sixteen. I hadn’t really imagined a ninth birthday.
This life has made us a bit shy about looking too far into the future. On the other hand, we are very good at living in the moment and very grateful for every milestone.
Sixteen and ten years since transplant are big ones.
Most of the published data about transplant stops giving numbers after 10 years. Way back when we first listed Patrick for transplant, the procedure was still extremely new and borderline experimental. It was a little more mainstream 6 years later when we finally found a match and Patrick was transplanted, but the fact of the matter is that the procedure was still both new and rare at that point. That means that there really was no reliable data set for us going into this. Patrick and other transplant around the same time as him are still pioneering — writing the book for others, if you will.
The good news is that the story Patrick is writing is a good one. At his checkup, the GI was on his case ten years ago and knew him well. It’s been at least five years since he’s seen Patrick and he got a bit emotional talking about how much he’s grown and how well he’s doing.
I marvel at the fact that Patrick vaguely recognizes but doesn’t remember having TPN. His memories of hospitalizations, surgeries, and transplant are only distant memories. He has only hints of memories of living in Nebraska or the Ronald McDonald House. Those things are all familiar and sometimes he’ll even be triggered by something, but he doesn’t know why.
For Brian and myself, however, those memories are still very poignant.
In September, we when we were in the hospital for his checkup, Patrick hadn’t eaten much lunch and was hungry, so we stopped into the cafeteria to get him a slice of pizza before the appointment. There are so many memories still in that place. I could see the table I sat at the call Patrick’s wish granter to tell her we needed to cancel his star-raising party because he’d received his transplant. Across the room was the table where we ate Thanksgiving dinner with Brian’s brother’s family, who drove in from Colorado to cook for us.
Just past the cafeteria, there was the door that used to lead to the dingy outdated section of family hotel rooms in the Leed Tower (I don’t think that even exists anymore), where we rented a room for the first week until they had space for us in the Ronald McDonald House. I remember the sagging mattress and the 70’s era carpet and the chip in the sink faucet and the fridge we stocked with sandwich fixings so we could pack a lunch to eat in the ICU break room.
It seems like just yesterday.
On our way out of the building, we showed Patrick the lobby where he met Santa Claus with Toys for Tots at Christmas and therapy pets every Wednesday and — most memorably of all — where he went trick or treating the morning before transplant in a too-small borrowed Buzz Lightyear costume.
What a contrast between that year and this one. Don’t get me wrong. Both years, he was spoiled beyond belief. He may have received almost as many toys, pencils, bubbles, and more from the staff at UNMC in the lobby in 15 minutes as he could get an entire night trick or treating.
Ten years later, Patrick was trick or treating at Disneyland. How amazing is that? He has sacks and sacks of treats and has been eating them since he got home. And that’s OK!!
We celebrated Patrick’s first transplant anniversary at Disneyland, too. I remember it being such a big deal that we laid only about ten pieces of candy and he chose one to eat because he couldn’t handle the sugar.
The aftermath: Trying to choose which candy to try first.
This week, Patrick made Brian run him from one roller coaster to another all week. (And because he’s spoiled, his dad does just that.) I couldn’t help thinking of that visit where we asked if it was safe for Patrick to ride the upside down rollercoaster. How big of a decision that was. How scare I was. And now he rides it over and over again, and it’s us whose bodies can’t take more.
We splurged a bit and treated him to Goofy’s Kitchen this trip. He ate macaroni and cheese and chicken tenders until he was too full for dessert. I should maybe have warned him they were bringing a cupcake, but I didn’t want to ruin the surprise. It was worth it anyway because Minnie Mouse came when they sang to him. She’s his favorite.
When he isn’t chasing roller coasters at the park, Patrick’s’s chasing characters. He loves to see names written and so he loves collecting autographs. I can’t help but contrast the way he made sure every nurse, CNA and doctor who entered his room wrote their name on the whiteboard when he was little. He’s always loved names. I think I prefer chasing autographs in the park, though.
Patrick doesn’t remember his wish trip. He doesn’t remember wishing. One of our regrets in his making that wish was that he was too young to understand it. We were so sure that if he didn’t wish, the opportunity would pass.
So ten years later, we offered him a chance to wish. Actually, first we offered to take him back to Disneyworld and show him where he’d gone for his wish trip. But Patrick didn’t want to relive a wish he didn’t make. He wanted to wish for himself, and his wish was Disneyland.
Yeah, Patrick isn’t looking at the camera. This photo is all about the shirts.
It’s been ten years and he’s looking forward — Living forward.
We have had some good moments this year for looking back. Through the support groups I work with, Patrick’s been starting to connect with other patients with short gut and intestinal transplants this year. He’s nervous about it, but I can tell it’s helpful for him to be a part of that community, too.
I also had a very tender moment at the Oley Conference this summer where I talked with an adult transplant patient. She told me about her relationship with her donor’s family and I had a chance to express to her my deep gratitude for Patrick’s.
There really are no words for that. My heart is all tangled up in the depth of their loss and the magnitude devastation turned to beauty. Every additional year, I marvel more at that gift of life. Patrick’s life and ours are forever changed and we are forever grateful.
What an amazing ten years it has been!
From hospital regular to completely lost in hospital halls. From a backpack full of TPN to pockets full of art supplies. From unable to eat to snacks scattered all around the house. From time is running out to we can’t wait to see what the future holds.
And also – when did I become mom to a sixteen year old?
Nebraska Medicine’s scheduling is horrible for coming in from out-of-state for procedures. They don’t have their schedules far enough in advance and so we always end up booking after flights are already mostly full and expensive. Therefore, we left for Nebraska at 8 p.m. the night before Patrick’s procedure.
Well, technically, we left at 6 because security can take so long for us that we always allow 2 hours. This time, we all got precheck and, without IV fluids, were through security in 5 minutes without opening a single bag. Different.
Patrick was supposed to start fasting at midnight, so we put his feeds on in the afternoon and were encouraging him to eat so he would be less hungry. Also different.
We grabbed some Wendy’s. He scarfed down a hamburger and most of his fries. Then he and his Daddy went and watched the plane and trucks outside the window.
We boarded and things seemed to be going ok. Then, as we started to taxi onto the runway, the pilot came on and announced that there was a huge storm coming in and we couldn’t take off till it passed. So, we sat. I was so grateful we’d pushed Patrick for a nap. We sat for an hour. And he played with the sticker book I’d bought him and ate snacks and was ok.
Our gung-ho pilot got word they were taking off the other direction and seemed to jump the line by taxing right down the runway. Next thing we knew, we were first for take-off. And as soon as he got the all-clear, away we went.
We landed late. 1 a.m. Brian hurried to the rental car counter while I got the luggage. Arriving late meant no Emerald Club skip-the-counter-just-pick-a-car-and-go service. No. Instead, Brian was at the back of a very long line. He was still waiting when we got our luggage. To his credit, the guy at the counter was trying to hurry everyone along happily by giving them all sports car upgrades.
He offered us a Dodge Charger. We were not pleased. We asked for our minivan. He turned and offered us a GMC Yukon. Not a minivan. Chevy Suburban? Not a minivan. Let me see if I can find any minivan keys in here. I chimed in and pointed out that we needed to carry all of the luggage we had with us, plus Patrick’s wheelchair. He assured us the Yukon could do that. We conceded. I was glad Patrick’s no longer on TPN and therefore requires 2 fewer suitcases. Otherwise, we would not have fit. Despite lack of storage, the car was huge. Brian did not have fun driving it. But Patrick was sold. He thinks GMC’s giant SUV’s are awesome.
We got to the hotel a little before 1. Brian did his best to distract Patrick and I tried to pull off the world’s fastest getting ready for bed. Patrick was too excited to sleep.
We made it to sleep somewhere after 2. I didn’t sleep well. For the 2nd night in a row. The night before, I’d been up worrying about the port placement. Now, waiting for the port, I was up all night worrying about which school Patrick should go to. Plus, our room had a streetlight right outside the window.
At least it was bright enough that Patrick didn’t notice that the sun had come up. He slept till after Brian was in the shower. Then we got up, hurriedly got ready, and were on our way. I stopped and grabbed some fruit and muffins from the hotel breakfast on the way through.
Check-in was uneventful. Patrick was very nervous and therefore acting very angry and non-compliant. He threw his toys and yelled and wrote on things with his markers. Meanwhile, Brian and I did our best to relay all of the right information to the right people. When we got to the waiting room, I was quite proud to feel that I’d actually covered it all.
When the anesthesia resident came to put Patrick to sleep, she asked Patrick for his line to give versed (superhero medicine, because it makes you happy and brave). She said, “Don’t worry, I just want to pull your line out.” Wrong words. Patrick freaked. He didn’t want his line out. We recovered.
She gave him the medicine and he got all groggy and limp. But he wouldn’t lay down. She asked him if he could feel the medicine working. If it was making him happy. Through slurred speech, he said “No, I want some more.” She gave him more. Not because he asked. But because he was still sitting up and shouldn’t have been able to.
Our friend, Devin, who is an anesthesia resident had come up to visit, too and he walked with us to take him to the interventional radiology room. Normally, we aren’t invited that far. Except when Patrick was headed into transplant and needed a line. It was actually kind of nice.
Then, we went and waited. Brian worked. I played on facebook. Brian napped. We waited. Things went just about the amount of time we expected. Except the doctor didn’t come give us an update after the status board said Patrick was in recovery. Soon, they called us to recovery.
Patrick was doing ok, but not happy. He was nauseous. We haven’t ever done anesthesia fasting without TPN. And it’s been years since we did it without his belly to downdrain. He was feeling nauseous.
But Devin had come back to check on him. And he immediately started ordering meds to make him more comfortable. They worked pretty well and Patrick went back to sleep.
Finally, Patrick woke up enough to want me to hold him. They brought me a chair and we snuggled down while he slept off the anesthesia and the short night. He still seemed a touch nauseous, but when he woke up enough to realize that he was allowed to go, he was up. He willingly drank the cup of water the offered to prove he felt ok, got dressed, and asked for a wheelchair.
We weren’t even out of the parking lot when he started throwing up. But once his belly was empty and we were out of the car, he was ok.
Going to the hotel actually worked for rest. Their wonderful cable package included Disney Jr. and Nick Jr. so he had an ample supply of his favorite shows. He rested. Brian and I took turns napping. We were exhausted.
Eventually, he started asking for food. I offered him some saltine minis and he did great with those. I had thought we’d run to a store and get him soup. But I didn’t expect him to feel so badly. So, when he wanted to get up and move, we walked down to the hotel’s little shop to see what they had. We settled on a microwave mac n cheese.. sans cheese. And Patrick won the heart of the employee there so well that she wouldn’t let me pay her.
We also visited the hotel gym and used their balance ball and step to work off a little bit of sensory energy.
They were able to get a port in. I was excited to see that they’d used a Bard Power Port. If you know anything about lines, you know that’s a good one. He is very, very bruised. And he was really freaked out to not have a line.
He still is. Both sore. And afraid.
We did rest as per tradition. We drove to the Lincoln Children’s Zoo in the morning. (That hour drive is a great chance for him to nap.) Then, we visited Omaha’s Henry Doorley Zoo in the evening. Inbetween, we did a mad scramble to find me a skirt to turn my grubby vacation/recovery clothes into something dressy so I could to go a devotional with some church friends in Nebraska. It was actually very amazing to find such personalized messages when I was a visitor and far from home. And we topped the night off with donuts.
Then, we flew home Saturday. Before leaving, we made Patrick change his dressing for bandaids, which really upset him. But we needed to be sure his incisions looked ok.
It was a long flight home. Patrick was dead tired and didn’t want to sleep. So he did naughty things to make us respond so we’d help him stay awake.
Patrick having a hard time with this transition from Broviac to port. He has gotten angry and tearful the past two days because, now that it’s been a week, he really shouldn’t be covering the incisions to bathe anymore. Patrick has used a “bath sticker” (aquaguard) to bathe since he was 9 months old. He doesn’t understand me taking this away from him. He also won’t hug me tight. I understand the bruising and swelling last up to a month.
I’m just remembering that I was asked for a more clear explanation of this procedure. Patrick has had a double lumen broviac line. A broviac line is a tunneled central venous catheter. There is an IV in a major vessel, then the line is run under the skin to help prevent infection and hangs out of the skin. It has to be covered with a dressing and is kept clean and dry. It has two claves on the end so you can access the bloodstream without a needle. Double lumen means two tubes in the same line. It also means double the risk of infection. You maintain a broviac line by cleaning and flushing it 2 or more times a day.
A port is also a central line, an IV to the heart. But the catheter ends under the skin. There’s a little disc at the end with a rubber-like top that you can insert a needle into to access it. When you need access, you have to scrub the skin till it’s sterile, then use a special needle to get to the bloodstream. Because the disc in one place, you can numb it before so you feel pressure but not pain with access. It can be locked with high dose heparin so you only have to flush it once a month. When not accessed, no other dressings are needed.
Patrick isn’t using his line. We’d have had it removed entirely except for the risk of his veins closing leaving no place for future central lines. A port carries significantly lower risk of infection. It also means a more normal quality of life.
We knew giving up this part of himself would be hard for Patrick. The Monday before the procedure, I took him up to our hospital where his child life specialist let him play with “Chester Chest”, a medical teaching model, and several other sample ports and supplies. We talked about how we could still give medicines and draw labs.
Patrick tried negotiating his way into keeping his line several times in the next days. One day I asked him what he was worried about, and he wanted to know how I’d get to his blood. It was nice to refer back to the teaching with child life and let him answer for himself, “I will have a port.”
I still look around for ethanol locks when I give Patrick’s meds. And I’ll feel as strange as he does the first time he’s allowed to immerse his chest without waterproofing. This has always been a part of him and it’s different to not need it. Good. But different.
It is a beautiful spring morning. I’m lying in bed being quiet because Patrick is sleeping in and I’m trying to let him. The birds are singing outside my window. And in my kitchen, my cockatiel Max is singing along. He is singing the Andy Griffith song. For some reason, this has caused me quite some reflection this morning. I don’t know how cockatiels sing in the wild. I know that sometimes Max imitates the sparrows outside the window. He used to have the sound of the squeak of our worn out dishwasher perfected, too. But his best and happiest song is the one I taught him to sing. We are human. But we are his flock.
And I’m realizing that just because his song is different because his experience is different, that doesn’t mean that his song is any less happy or any less beautiful than the sparrow’s. In fact, to me it is more beautiful because it comes from our shared experience together.
I sometimes mourn the childhood that Patrick is missing. I wish he could get up in the morning and go to school with the other children. I wish I didn’t feel so inadequate and in over my head trying to fill in the gaps left by this ridiculous system they call “home/hospital education” that assumes that all children who can’t go to school for medical reason must be too sick to devote time to learning. I wish we could go to the places that other people make friends or that our old friends could come to us more often so he didn’t feel lonely.
But just because our world is different, that doesn’t mean our song is any less beautiful or happy. We are happy.
We sleep in, or we don’t. We get up and get Patrick and bath and start a load of laundry because night always gives us a full load to wash. We see daddy off to work with love and silliness. We decide if Max gets to take a shower with me.
Mornings are Patrick’s best independent time so I try to use that time to get things done around the house. Yesterday, it was devoted to precooking the chicken and sauce for chicken parmesan we were making to take to a neighbor for dinner. Patrick played on his tablet and I listened to an audiobook while I puttered around the kitchen. Other days it’s business for me and I’ll submit or review medical claims, call providers and insurance, or schedule appointments.
Then we run any errands that need done. Sometimes that means shopping at the store with kid sized carts where Patrick will run into the backs of my legs a dozen times and get put in a time out in my big cart at least once because he’s gone into total sensory overload and can no longer hear and follow my directions.
We fit in mommy school at some point in the day. Sometimes early. Sometimes late. We practice reading and writing. Sometimes we make a craft. Yesterday because it was St. Patrick’s day we emptied Patrick’s piggy bank and practiced the names of all the coins. And we’ll find some food to count and add and then eat. (Lucky charms marshmellows were a bit hit.)
We take our time eating lunch as its my best feeding therapy time. Patrick gets to pick and I add something to push his limits and we practice taking bites and swallowing together. I was beyond proud yesterday that Patrick actually requested the food we introduced for feeding therapy last week… beef and vegetable soup. And he ate the carrots and potatoes out of it as well as a grilled cheese and 3 handfuls of “oystey” crackers.
Then Patrick will avoid complying with the naptime that he’s spent hours telling me he’s so tired that he will for sure need today. If we’re lucky, the phone doesn’t ring in this time.
Eventually, he’ll take a nap. After months of practice, I’ve finally figured out how to make this one happen without tears and lost tempers. I rub Patrick’s head, but only if he’s lying still and quiet with his eyes closed.
Sometimes, I need to lay with him while he sleeps and I’ll use the time for scripture study. Sometimes I can sneak out of the bed and get things done. If I get out of the bed, he sleeps longer.
Then we’ll make dinner. Patrick is totally into wanting to learn to cook right now. Yesterday, he willingly snapped a whole package of green beans for me. Then he rubbed his eyes because they were tired and they got all red and puffy and I’m wondering if I can let him snap beans again. Other times he helps me measure and pour ingredients.
Brian gets home earlier now than he used to, which is nice. We’ll have dinner and then the evening is usually devoted to quiet family time. Patrick will watch a show while I clean up the kitchen and make formula.
I’ve learned that he medications make his belly move so we’ve started to give some of them a bit earlier so Patrick won’t be calling me to change his diaper half an hour after going to bed. That’s ok. Sometimes that waiting time can even be story and cuddle time.
And then Brian and I usually get a little bit of time together before we go to bed ourselves.
Patrick and I are starting to really enjoy each other. We are working together better than I remember ever before in the past. I really think his ADHD and sensory issues, though sometimes aggravated by the steroids, are less pronounced since transplant. (Perhaps because his nutrition is better or because he feels better or just because this whole experience made us all grow up.)
Yesterday I tried to explain the rules of St. Patrick’s Day to Patrick. Only he got all caught up in the pinching part and missed when and why. In fact, he became convinced that he needed to pinch everything green all day. Especially me. Pinching back 7 times only reinforced the fun and we had a silly giggly day of pinching each other all day long.
So its a different song. And I think there will always be times that I wish we were sparrows. But that doesn’t make our song any less happy or any less beautiful.
Patrick had a clinic appointment today. Brian actually got to come with us. (Yes, the team cleared him and his cough.)
It went about like this.
We arrived and visited with all of our transplant friends in the waiting room because it was transplant clinic day. They called us back and grabbed a set of vitals. Then they showed us to a room.
Patrick, who stayed up early, got up late and didn’t nap proceeded to run around the room getting into everything he shouldn’t.
The nurse coordinator came in and went of Patrick’s medication list and asked us if we had any new concerns. I think we told her we wanted to follow up on the suggestion that Patrick might be allowed home this month.
She left. We moved all the gloves up high on the wall so Patrick couldn’t play with them.
The dietitian came in and we talked about Patrick’s current diet and how he’s tolerating feeds. We discussed how much he’s eating, his upset stomach of the past 2 days, and what the next step for feeds would be. She also told us that we could change his rate when his gut settles down to give him a 4 hour window.
Then I asked her what her goals and criteria were for him. What she wanted to see to feel like he was doing well enough to go home. She said he seemed to be doing really well. He’s gained 5 pounds since transplant. He is continually doing better with eating.
She said that, from her perspective, he is ready to go. But that she doesn’t like being the one to make that call. Then we talked about how diet would be managed once Patrick was back in Utah.
She left. Patrick’s behavior went bezerk. We put him in time out and he started throwing a major tantrum.
Then the team came in.
It was not surgeon we’d heard was running clinic who we’d hoped to see. I thought, “well, maybe we won’t discuss this this week after all.”
Thankfully, Patrick settled down. He said the phrase we’ve been rehearsing with him. “I want to go to my home.” They kind of didn’t answer.
So I told the doctor about Patrick’s strange gut this past few days and how I wondered if it was something he ate or the leftovers or Norwalk. Then I asked if the labs looked good, thinking that maybe I was being overly optimistic. Nope. Patrick’s labs look great. No dehydration. Even with things seeming off, he’s in a good place. His Prograf level needed a slight increase.
Then the nurse coordinator turned to the doctor and asked, “So the big question is, can they go back to Utah?” And you know what? The doctor said yes.
I can’t remember his exact words. I was so stunned. Basically, he knew we’d discussed it in rounds several times and knew what had been offered and that Patrick was meeting those goals.
So, we asked about logistics like setting up homecare and planning for Patrick to go back to school. (That answer scares me. They said to start planning for him to go to school. I am trying to figure out how to wait out the last of cold and flu season.) And I asked a couple of my other random questions.
And the nurse coordinator said she’d call me tomorrow. And they said to come back in a month.
And that was it. We walked out feeling like we’d cheated the system somehow.
So we are working on plans to go home. We’d like to leave tomorrow afternoon if we can to stay ahead of a storm that’s due to come in. That would put us home Saturday night or Sunday Morning. We are renting a van to take stuff home in and I will drive Patrick in the car.
Brian planned the trip. I called the insurance and Patrick’s doctor back home.
We celebrated valentine’s and Patrick’s sealing anniversary early by going out for dinner.
We went shopping for snacks. Then we packed up all our clothes.
We never count on something promised to us without expecting things to go wrong. It is possible that homecare won’t get arranged and we won’t be able to leave till after Monday. Or that Patrick’s gut really will be sick, not just confused by so many cheerios. Or the weather will turn bad. Or something.
And it’s kind of taboo to talk about going home until you walk out the door. So we aren’t coming home yet. We are just making plans to come home.
The hospital internet is iffy today and things have been quiet. So a brief update. No biopsy results.. But that means no bad news yet. Patrick’s bleeding has stopped on the new meds and they started letting him eat as well as some small feeds today. His belly is still a bit unsettled. Brian and I are better.
Tonight, Patrick’s progress levels are high and he is acting like a child possessed, but only when we sit with him. On his own he is fine. He has one of his favorite nurses which should balance out the night.
They brought Patrick an easel and he had painted and played and napped and his school teacher came and gowned and gloved up to work with him to he was to tired to be productive. Oh, and Biscuit came and brought Patrick a book.
I didn’t update yesterday because hands were full and because there wasn’t too much to say. The first 2 or 3 days after any intestinal surgery are kind of miserable. Bellies hurt when you mess with them. So this time around, Patrick’s nurses have been pretty good about staying on top of pain medicine. His pain has been better with that help. The morphine makes him itchy and sleepy. The other medicine, called Roxy, seems to work very well and when it’s in his system he rests. But it’s not IV so you have to hope his belly can handle it when you give it. Mostly, he just slept yesterday.
In order to reduce infection, they didn’t entirely close Patrick’s incision from his stoma. The muscle wall is stitched closed, but the skin layer is “packed.” That means it’s stuffed with sterile saline soaked gauze and has a gauze over the top. The gauze has to be changed twice a day. Patrick pulls his shirt up over their head so he doesn’t see while they do this. The is definitely the more painful route. But it has proved better healing overall.
Brian held him most of the morning yesterday. Then he moved to the bed and I snuggled him all afternoon while Brian worked. I caught up a bit on my missed episodes in Hulu. And i started listening to an ebook with my new bluetooth headphones. (Love that my Christmas presents are making this hospital stay feel a little more comfortable. With my new backpack and winter clothes I feel much less like a vagrant wandering through the hospital.)
Patrick woke up feeling a bit better and played on the bed for most of the evening. It took till 11 for him to finally fall asleep again.
Today hasn’t been as comfortable. It takes days for the bowel to wake after surgery. Especially with pain medicines in the system. So, without anywhere else to go, his belly juices started to back up and he started throwing up this morning. They finally put his g-tube to suction this morning and he seems to be feeling much better now.
The good news is that his gut is gurgling from time to time and so far it seems like his body is on the road to healing well. It’s just hard for the first few days.
Hopefully we can keep the status quo today. Maybe even get Patrick back to sleep as being tired and being on steroids really does make him not feel like himself. I’m going to be an optimist and post this update now hoping that there won’t be any more big news today.
I apologize for the long lapse in posts. It’s all for very, very good reason. Friday, Brian came back into town. And we have kept ourselves busy all weekend with family time.
I can’t put into words how good it is to have our family all back together. Even if we are all in a pretty small room together. Getting in the car to drive to the airport to pick up my husband and best friend made me more than a little emotional. It’s only been 2 weeks, but it was a long 2 weeks for all of us.
Friday night’s dinner group went all out with a full Christmas dinner, decorations, bingo and prizes. It was not a bad welcome home party. Patrick had a hard time sleeping with the excitement of Daddy with him in he Ronald McDonald House the first time. (He doesn’t know Brian was here while he was in the hospital, so he kept trying to give Daddy the tour.) And it was also the first day with a change in Patrick’s feed schedule so I botched the feeding pump programming and schedule so it alarmed a few times during the night and none of us got a great night’s sleep.
Yesterday, we got up and Brian dived right in helping with Patrick’s medications. We’re used to a lot of medications and a lot of care but there are a lot of little intricacies that it takes time to get used to. Still, we got through all of it so much faster with extra hands working on it.
That was great, as we wanted to go to the store and Patrick is safest if we shop in the mornings while stores are uncrowded. We went to Target and picked up a few things we needed. Then, we got in the car to go. Only, it wouldn’t start because we’d accidentally left the lights on and the battery was dead.
So, deciding that we needed nice backup plan for me when I’m alone anyway, Brian went into the store and bought a car battery jumpstarter. We got the car started and then went for a nice long drive to charge the battery.
When we got back, we grabbed some lunch. Patrick has surprised us these last few days. He has gone from casually grazing on food to eating voraciously. Ok, well.. almost eating. He still spits out much more food than he swallows. Except soup. He’ll eat a cup of soup pretty easily. He is always asking if he can eat and asking for more at the end of a meal. I’m kind of excited to get him started in feeding therapy and see if we can get him the skills he needs to swallow his food. Because he sure does enjoy it right now.
Afternoon nap was much harder work than it should have been. Patrick is always tired but having a hard time sleeping here. When he did make it to sleep, though, he slept the next 2 hours.
We ended up waking him because we needed to get him ready for the evening’s plans.
Last week, a little before our anniversary, I talked to a friend from church and asked her if she’d consider making arrangements for someone to babysit Patrick here at the house so Brian and I could go on a date. She volunteered. I asked her if she could suggest any restaurants. She ended up going above and beyond. Not only did she give me the names of a few places, she e-mailed the nicest steakhouse in town and asked them if they had any coupons that might make them affordable.
Their reply was one of those humblingly generous things that we are having a hard time getting used to. Hearing our story, 801 Chophouse offered to give us a $100 gift card that would cover the cost of our entrees. I’ve eaten at a lot of very nice restaurants. This one definitely had the high-end feel down, though. I felt a bit young and naive as the waiter went through the menu options.
The meal was delicious, though. New York Strip in a bone marrow butter bath, aged cheddar hash brown potatoes, lobster macaroni and cheese, and some of the yummiest green beans I’ve ever seen with bacon that was as impressive as the steak.
They gave us extra special treatment because we were there celebrating an anniversary. The menus even had “Happy Anniversary” printed at the top.
And the amazingly decadent chocolate souffle with chocolate, strawberry, and vanilla cream sauces on the side.. well they gave that to us as an anniversary gift.
After dinner, Brian and I went for a walk around the area known as “Old Market.” There were Christmas lights lining a sort of park/waterway with bridges and pathways. A perfect atmosphere, if more than a little bit cold.
When we got back to the house, we found Patrick happily dining on ham and mashed potatoes. We said goodbye to my friend and her friend who’d come to help and then sat down to do crafts.
Today’s been a mostly quiet Sabbath. I got to go to church while Brian and Patrick stayed back at the house and played and did some work. Once I got back, we went back to the Mormon Trail Center to see the gingerbread houses together. Patrick was calmer this time. (Medication right? Previous experience visiting?) Anyway – this made it much easier to admire the gingerbread houses this time around. And when we got upstairs, he headed right for his favorite kid-friendly activities like dress ups.
Patrick is eating up daddy time. I kind of feel bad because that’s about all Brian has had a chance to do. They cuddle together and watch TV or play on their cell phones. Meanwhile, I got to play the piano and make frosting for gingerbread houses.
Patrick didn’t last long at that activity tonight, but he had fun doing it and I’m glad that Wendy went to the trouble to get all the ingredients and put things together. I think everyone is enjoying it.
We’re just about to eat dinner. Last night’s dinner group saw me preparing leftovers from a turkey carcass to be turned into soup.. So they made homemade egg noodles and turned their leftovers into soup for us today instead. That’s what we’ll be eating. Then we’re hoping that not giving Patrick a nap has made him tired enough to go to bed on time.
I am trying a short post from my cell phone again. That will explain the crazy words in wrong places.
Patrick was angry with me today. I think he wanted more attention. And I think he wasn’t ready to skip his nap two days in a row. But we made it through.
One of our friends here for to go home yesterday. More of that will happen as families had home for Christmas. That made it so morning med prep wasn’t as quiet and lonely. A few people were there to say goodbye.
We spent some time today trying to get ready for Brian to come back. He comes in tomorrow. So we cleaned and we shopped.
We had a follow up visit with the transplant team today. I bought Patrick a bag of BBQ potato chips at the store and he are these through the whole appointment.. Spitting them out in a bag while we talked and no one batted an eye.
Things still look really good this week. His output was a bit high yesterday which worried me, but they said it was still very good. The changes today were minor. They are adding a lipid to his formula in the morning to help make sure he doesn’t get a fatty avid deficiency. Also, he has been too dry, so they are adding some extra fluid. Mostly just a recipe change. Well, plus a volume change, but that is still easy so long at his gut is OK absorbing it.
The concern is still making sure his lungs stay clear so no elecare formula for a few more weeks.
After clinic, we dropped off some spare parts (a line repair kit and g tube button) to a family we meet inpatient. Their little girl just got a line and started TPN. So we wanted to give her the makings of a special doll.
The rest of the day included boys clues, a craft, soup for dinner that Patrick ate well, and playing the piano. This was made sweeter as I fit some audience tonight.. The grandparents of the boy who passed away. Turned out grandpa is a baptist patriot. They came just to listen to the music.
I just crashed helping Patrick sleep
so this is a quick update. More tomorrow. I have high hopes Brian can fix my internet
Well as the week goes on, I feel bad for feeling so crazed and out of control our first couple of days here. We are establishing a routine and I am finding myself with plenty of time to kill these days. At least the days go quickly.
Yesterday morning started with labs. On the weekend, they have to be drawn at 8:30 but submitted by 9 or the results won’t be back. So we were up and ready early. The lab draw was done early, though, so we quickly made it downstairs.
In the morning, Patrick has meds at 9. Two of these are stored on a fridge on the first floor so I draw up the room temperature ones in our room then we finish downstairs. Patrick gets borer and wanders off. This time, I brought a little game with me and it went better than usual.
Then, we wash the containers his formula is mixed in and make a new batch for the day. Patrick likes helping me shake the soap in the mixing bottles.
Next, we grab it dirty laundry and poor in a batch. Patrick plays and I get some free time. I had a to do list on my computer but it wasn’t coming yesterday. So I switched over to playing the piano. That created a bit of a sitter in the house and made me wish I had had Brian pack more music.
Patrick wasn’t very happy with me though for directing him to play alone when he was bored. And he got more and more naughty as time wore on.
Finality, we got to our room and he was both dysregulated (out of control of his sensory processing) and feeling pretty disobedient. We ended up sorting down and drawing some house rules. Doors and drawers stay the way we found them. Don’t play with light switches. Leave the wheeled garbage can in its place. Only scam the spot let card I’ve each time we use it. Stay by mom. Listen and obey the first time.
We free and hunt up these rules and I granted a bunch of stickers to praise him when he kept them. I also cut a “stop” cue or if craft foam and told him that any time I showed it and he stopped what he was doing to come to me, he could have more stickers. The rest of the day wasn’t perfectly smooth, but we both were trying harder and it worked a little better.
The weather is still warm. Mid 50’s. So I grabbed us sweaters and we tried going to the park again. But we were barely out of the car when Patrick was shivering and asking to go. Guess I underestimated his body mass. So we came back to the house and took a nap instead.
Then, it was time to start dinner. A few days ago one of the other bonds and I were talking about cooking. There are a lit of Hispanic families in the house right now. I mentioned that I learned to make tingavas a missionary and love it. And somehow decided I should make it on the next day we didn’t have a dinner group.
That was yesterday. I bought some ingredients the day before, but don’t dare take Patrick in a store on Saturday because of immune suppression. So we made a shipping list and a few other moms divided up the rest.
We spent yesterday evening cooking. I made things. Violeta made rice. Miriam made salsa. Wendy did the veggies and chased Patrick. We made enough to share and so helped feed 4 other families. They all offered to help pay for it, too, but we have been given some generous gifts this week and it felt good to share. Instead, they helped with cleanup.
Dinner was yummy. It was so nice to have some normal.. To cook and visit and let Patrick play without me nagging him over rules. To eat something different.
After a few hours running around playing, Patrick stated to complain that it was hard to walk. His cerebral palsy has between especially pronounced odd late. His muscles atrophied while he was in bed and as we work to rebuild them, the spasticity in his leg and hip is coming back strong. I am having him wear his brace most of the day, but his hip still turns. And so by dinner, he was so tired he was falling because he was paying and walking and climbing stairs and made those weak muscles tired.
After dinner, I turned on blues clues in or room and finally convinced him he could stay and rest and watch while I ran around. So he sat in the bed and watched TV while I got meds and formula for the evening.
We went to bed on time, but chatted with Brian before sleeping. That made Patrick excited. At 11 I declared I was too sleepy and needed to go to my bed. I think he fell asleep about the time I did.
And now you get a post because I had a bad dream and need to be up to refill formula here soon so I figured it was a good time to write.
I took these pictures two days ago at the park. Just haven’t been able to get them to upload till today.
Patrick Hoopes 