Tag Archives: transplant

Transplant Day 804 and Look Ma. No lines!

**Composed yesterday in the surgery waiting room**

This is a good news post. But I’m finding myself so very out of practice at writing updates in the surgery waiting room that I am having a little bit of a hard time getting started.

At 7:30 this morning, we kissed a very drugged and giddy Patrick goodbye at the O.R. doors. He is having his port removed today. We haven’t needed it in a while. We left him with a central line because this his veins are so scarred that putting in a new line will certainly be difficult. This port has been so much healthier than any other central line he’s had before. And it saved him trauma with labwork. We didn’t feel any rush to get rid of a line

But this summer Patrick’s bloodwork started to come back so stable and consistent that his decided to switch labs to every other month, the port became more effort and risk than benefit. (They have to be flushed every 30 days regardless of if they were used.) We knew we’d need to have a talk about removing the line soon.

Last October, we took Patrick for his annual transplant checkup. When we raised asked the doctor if we should be considering taking the port out, he was surprised to find it was even still there. There was no question that it was time. Soon… But of course, we still took our time.

We allowed time for the doctors here to talk to the folks in Nebraska and know what would be involved in removing a direct superior vena cava line. We tried to wait for the end of cold an flu season.

But also at Patrick’s follow-up in October, the doctors decided to stop Patrick’s prednisolone, which was a major part of his immune suppression. Within two weeks, he started to have a severe pain in his side. After about a week, a small bump finally formed. And when we took him on a rollercoaster ride, that bump burst revealing a small abscess.

For some reason, one of the dissolvable stitches in Patrick’s ostomy scar never dissolved. It just stayed there as long as his immune system was heavily suppressed. But as soon as the prednisone was gone, his body started to rebel against a foreign body. He’s had a recurring abcess for several months now. Just a little pimple that would rise and fall. But it hurt like crazy. And that’s what finally got us here.

So here we are. An hour after Patrick went back, the surgeon was back out to report that all had gone well. He’ll have a little bit of an open wound where the abscess was an a pretty sore area on his chest until the space where the port was heals.  But overall, this should be pretty easy.

We’ve taken the port for granted for the past year or so. That makes this transition a little bit simpler. But the simple realization that Patrick has IV line for the first time in his life is a little bit disorienting.. miraculous.. scary.. comforting.. umfamiliar.. splendiferous!

Now not every fever could mean sepsis. Now he’ll have to have labs drawn from the shoddy veins in his arms. Now we won’t have to wake up early once a month to apply numbing cream before the port is accessed. Now we may not have numbing cream at all. Now he won’t have to protect his chest to play. Now it matters more if he eats and drinks. Now we won’t have to worry if a clot is forming. Now he may not automatically qualify for nursing. Now there’s one less thing that makes him different from other kids.

But really, it’s about time. Because I keep forgetting that it’s time to access his port. And I keep forgetting to tell doctors he even has one. He really didn’t need it anymore.

I’ll leave you with the words of a song that Patrick is singing or making me sing at least once an hour right now.

“I feel better, so much better
Thank you doc for taking all the ouchies away.
I didn’t feel so good till you fixed me like I knew you would
And I feel better. So much better now.”

Whom the Lord Calls


Valentine’s weekend represents a lot of milestones for our family. Two days ago, we celebrated the seven years since we took Patrick to the temple to be sealed to our family. Three years ago, we took Patrick to Nebraska to have him evaluated for a transplant there. It meant moving to a better program, but leaving a lot of comfort behind. A completely foreign city, a huge hospital, and no one we knew. And then one year ago, we arrived home with Patrick after he’d received his transplant, evidence of a miraculous recovery.

And then yesterday we added one more. Yesterday, Brian (also known as Howie, if you are ever confused by my mixing names in this blog post) was called to be a counselor in our bishopric.

A bit of explanation for those less familiar with the Church of Jesus Christ of Latter-Day Saints. The “Mormon” church has a lay ministry. That means that we don’t have professional clergy. At all. Some full-time. But none are formally trained. And none are paid. Instead, we are all trained as a part of “bringing up” in the church and we all take turns. Every 5 or more years, a new bishop is called. His service is voluntarily and in addition to his regular job, but no less real in its demands. He is a pastor to his congregation. Leader, comforter, judge, and friend. And he is helped in his work by two counselors. Brian was just made a counselor. (And in order to serve in that assignment he was also ordained a high priest.)

But this blog isn’t about Brian or about bishoprics. It’s about our family and our journey together. And so I’m going to share some reflections I’ve had as we prepared for this new assignment. (See, even though the news was only announced yesterday, we’ve known for a few weeks and I’ve had some time to think.)

A phrase came to my mind a few days ago. “Whom the Lord calls, He qualifies.”

And so I’ve been thinking about the calling I’ve been pursuing for the past seven and a half years. My calling as Patrick’s mother.

Seven and a half years ago,  I took that a phone call, my life changed. But I don’t think you could say that the Emily who answered that call about a boy who needed a family was qualified to be a special needs mom, a short gut mom, a TPN mom, a transplant mom, an autism and ADHD mom, a feeding therapy mom, a food allergy mom. I had tried to prepare to be a mother. I had often wondered if I hadn’t been given the chance yet because I wasn’t really prepared to even be a mother. (I wasn’t so very wise then, was I?)

Patrick on His sealing day.

Patrick on His sealing day.

Some people say that special children are only given to special parents. And I don’t think that is true. At all. I’ve watched hundreds of moms in the support group I run learn about their children’s diagnosis and realize that they don’t have even the beginning knowledge required to do what is required of them.

I certainly wasn’t equipped. I was impatient. I was just learning how to handle my anxiety. I had panic attacks when schedules changed. (Umm, drop everything and run to the ER? What?) I was absolutely phobic of doctors and hospitals and especially surgical procedures.

When I took Patrick for his transplant evaluation, I had learned a lot and was a seasoned medical mom. But I couldn’t have imagined what that experience would be like. The pain he’d be in. The effect his medications would have on his moods. The trauma we’d both have to learn to live with. And though I knew being far from home and without my husband would be hard, I couldn’t have prepared for it.

Patrick and his dad in x-ray at his transplant evaluation

Patrick and his dad in x-ray at his transplant evaluation

When we brought a “new” Patrick home, I wasn’t prepared for the growing and changing that would happen this year. The sheer weight of trying to learn a whole new way of life. A new gut in many ways opened doors to a new him and needed a new kind of mom.

I wasn’t qualified for any of these things when I started them. But I was willing. I was teachable. And I trusted that the call came from the Lord.

I have received a lot of on-the-job training. I have had solutions to problems come to my mind with such clarity and perfection that I know they can only have come from a knowing Heavenly Father through the Holy Ghost. I have shed lots of tears when I didn’t feel I was measuring up. And then I’ve gotten up and kept trying.

I have learned to rely heavily on friends and family and neighbors, on experts willing to take the time to teach me, on other parents who started out as strangers but became friends.

And I’ve learned that truly, whom the Lord calls, He qualifies.

He does it. Through His grace. If we let Him.

Special children aren’t given to special people. Ordinary people become parents to special children all the time. Ordinary people are faced with all kinds of devastating trials every day. Ordinary people step up and do impossible things every day.

There is a saying that floats around a lot. “The Lord won’t give you more than you can handle.”  That isn’t quite right. Here’s what the scriptures really say:

There has no temptation taken you but such as is common to man: but God is faithful who will not suffer you to be tempted above that ye are able; but will with the temptation also make a way to escape, that ye may be able to bear it.  1 Corinthians 10: 13

In other words, “The Lord won’t give you more than you can handle without also giving you a way to handle it.” He uses trials to make us better. To make us more like him. He takes ordinary, willing people and makes them into special people. Or, in simpler words, “Whom the Lord calls, he qualifies.”

P.S. Don’t take this as bragging. I still consider myself far more ordinary than special. But I digress…


Here we are. Another Valentine’s weekend. Another big change. I don’t know quite yet how Patrick and I are going to fare with Brian even busier. I’m sure sacrament meetings are about to be really interesting. And bedtimes.

I am sure that my humble, determined-to-serve husband is feeling a bit overwhelmed by this new calling. I’m also certain that he will do a marvelous job and that the people of our church are going to be really blessed by having him on their side.

And I’m going to do my best to keep up. That’s what I’ve been doing the whole time I’ve known him.

Brian loves to go for walks. When we were newlyweds and lived downtown, he would decide to walk to the city center. That wasn’t a short walk. And with his longer stride, I had to take an awful lot of steps to keep up with his pace. He has taught me quite literally what it means to “lengthen your stride.”

That’s what it is like having him for a best friend and husband. He’s always challenged me to quicken my step, lengthen my stride, and do a little better.

I’m ordinary. And short-legged. But I’m trying.

And whom the Lord calls….

Transplant day 349 and the one-year follow-up

We just got back from Omaha again. It was a short trip. Barely more than 48 hours. In some ways very routine and unexciting. In others, very eventful.

About a month ago, I remembered to ask Patrick’s transplant team if he was supposed to have a one-year follow-up appointment. They said yes.. and then I asked if it really had to happen right on the transplant anniversary. After all, remember, Patrick’s transplant happened both on his birthday and on Halloween. We didn’t really want to spent October 31st at a doctor’s appointment.

They said it didn’t matter, and so we decided to take advantage of Patrick’s fall break. We checked him out of school on Wednesday at lunch and hopped on a plane to Nebraska.

He was crazy excited this time. Or may anxious. I can’t decide. He was happy about the idea of seeing his nurses and couldn’t seem to let it go. We tried to explain that this was just a checkup. But he didn’t settle down until after the appointment. I think because then he knew it was all ok.

Wednesday night, because Patrick was bouncing off the walls, we checked into our hotel but then headed down to the riverwalk to try to burn off some of his nervous energy with a stroll along the Missouri. It was really dark. And it took a really long time for Patrick to settle down. But eventually, he did. And it made him tired enough to sleep pretty well that night.

The next morning, it was cold. Especially for us, coming from Utah’s record-breakingly warm fall. We tried to go to a playground but got too cold. So then we went for a drive just because. We decided we were hungry and Patrick asked for chicken nuggets. So we drove to McDonalds and Patrick discovered McNuggets. I discovered that Sweet and Sour Sauce is made with peaches and so there really are no Patrick allergy-friendly dips available and we settled for ketchup.


Finally, it was time for the appointment. Patrick hadn’t finished lunch so we brought it along and as the team came in, Patrick was munching on french fries. He then decided he was still hungry, and we added on a lunchable.

The appointment was mostly routine. They recorded his vital signs and growth, went over his medications, asked if anything big had changed. Then the surgoen joined us and looked Patrick over. He said Patrick looked great. He said to go ahead and discontinue one of his antibiotics. And we talked about when and how to decrease his immunosuppression one more level. Then I asked some questions I had. Patrick played with the doctor and his cell phone. And then they went on their way.

Posing with some statues at the zoo

Posing with some statues at the zoo

The dietitian came in to talk to us next and we decided to go ahead and stop Patrick’s tube feeds and see if he can keep up with his nutrition orally. That doesn’t mean that for sure this will work. It means a really focused effort to make sure he’s eating and drinking enough. But it also means some new comfort and freedom for him.

Not doing tube feeds means having to figure out some other things. Like teaching him to take a chewable multivitamin instead of giving a liquid. It also means that we have to figure out a way to give him 1 teaspoon of baking soda in divided doses throughout the day. Right now, that can go along with his meds in his g-tube. But one day, they’d like a goal of him not needing anything by g-tube. They’d even like to remove his g-tube. And so eventually we’ll need to find a way to get him to take baking soda in food.

A few weeks ago, the hospital’s PR department called and asked if we would be willing to let a news crew come to Patrick’s appointment. So there was a cameraman there filming the whole time. (Well, except when the dietitian came in. She is camera shy.) And then we went and did interviews afterwards. It’s so hard to capture this big story in just a few words. I hope we did it justice. We tried taking them upstairs for Patrick to visit with some nurses. That just ended up being really awkward. Oh well. One day, the story will air and I’ll share it here. We hope it gets people talking about organ donation. And maybe express our thanks to Patrick’s donor’s family and also the amazing medical team who got him this far.


Couldn’t resist this photo op.. given that these two missed wearing their matching minion costumes last Halloween.

We stopped tube feeds that same night. Patrick was really restless in his sleep, too. I don’t know if that was because of the missing tubes. Or if it was because I snore. Or because he discovered how truly heavenly comfy sleeping in down pillows is and spent the whole night trying to figure out if he wanted to sleep in the down pillow more or sleep snuggling with me more. I finally told him I didn’t mind him sleeping on the pillow. He said, “You won’t get mad?” And I said, “No. It’s a soft, soft pillow” and he snuggled down and went to sleep. He’s asked for a down pillow for his bed at home.

After the appointment, we had 24 hours before our flight home. So we did our best to find some family fun. We went to the zoo both days. The first, Patrick wanted to just play outside. We got jumbo pretzels that we ended up sharing with some very demanding peacocks.


And we let Patrick play on the zoo’s playgrounds that we’ve mostly shied away from in the past year. Then, we went to find dinner in Omaha’s shopping district called Old Market. We ended up at a family italian restaurant called Spaghetti Works where Patrick got to experience his first salad bar. He ordered grilled cheese, which turned out to be a very disappointing sandwich made of two pieces of cheesy garlic bread stuck together. So instead, he ate my spaghetti.


The next morning, we packed up, ate breakfast, did laundry. Finally, we had to check out and so we went back to the zoo. Brian splurged a bit and bought all-day ride passes and instead of looking for animals, we spent the day riding stuff. We rode their steam-powered train. (Makes all other zoo trains seems like a huge disappointment.) We rode the carousel. We rode the “ski-fari”, in other words, one of those ski-lifts made amusement park ride.

The ride passes included admission to the stingray encounter which actually turned out to be awesome! They have trained their stingrays to take a piece of fish from the back of your hand with a certain command. And therefore, because they know this command, if you put your hand in the water they right way, they’ll swim over and put their mouth over your hand and suck. They call it a kiss. Also, because guests feed them, the stingrays will come to guests looking for foods. So instead of gathering hoping to snag a quick touch, you have stingrays coming up and reaching out with their fins to get your attention. It was really cool.

It took us all day to figure out how the zoo tram worked and we happened to go exactly opposite the most efficient way. However, that did earn us nice walks through the aviary and lemur island exhibit, which we didn’t do much of in the winter. And then we had a nice long ride to end our day at the zoo.

IMG_20151016_112902 IMG_20151016_113147

We went back to Old Market for lunch. Brian remembered that I’d heard of and really wanted to try a restaurant/bakery called Wheatfields. They have a reputation for being really allergy conscious. We caught them 5 minutes before close so we made a hurried lunch decision. But it was delicious, nonetheless. I ordered Patrick his first cream soup. (New option without a dairy allergy.) He had the creamy chicken and rice. Ok. We both did. I ate about half of it because it was huge. But he did great with it, which gives me courage to try more. If you have a great cream soup recipe, sent it my way.

And then, we caught the flight home.

I am super, duper proud of Patrick who made it the entire trip in underwear and without any accidents.

In fact, I’m just extremely proud of Patrick. He discovered this old video on his tablet taken a couple of years ago. It’s of him and me playing at the table. Nothing much. But I can see so many changes.

Patrick’s speech has come SO far in the past year. In the video, he is licking and spitting out fruit snacks and asking me what happens if he swallows. Now he is eating full meals. In the video I’m telling him not to drink too much water so he won’t make himself sick. Now the only concern is if he’s drinking enough. He’s still himself. Dramatic. Adventurous. But without the limitations.

He has come SO far.


If you’re wondering why I’ve been acting a little crazy…

What an overwhelming two weeks I have had. If you’ve happened across me you may have found me forgetful, worried, tearful, distracted, jumpy, uncertain, self-consumed or any other manifestation of anxious. I live with anxiety. It’s been part of who I am for a long time. When we were undergoing fertility treatments, it kind of consumed me. Therapy helped teach me to live with it. And now? Well, it’s been a very stressful two weeks and anxiety has been thread running throughout all of it.

It is no surprise that this has been a hard stretch. I’ve been saying for a long time that my goal for August was just to survive.

Brian went to Europe (Ukraine and Poland) for work for 10 days. Wives were invited and I couldn’t go and that hit a lot harder as he got on a plane and left than it usually does when he has to travel. Also, this was one of those real long-haul trips. A long one. And a busy one so that most of our chances to talk to one another were stole little moments when one or the other of us should have been doing something else, like sleeping.  And there is no real cure for a linguist and lover of travel and culture to stay at home while her best friend sees the world without her.

It was also one of those really busy times here at home. As I mentioned in my last post, we have been working with Patrick’s allergist, GI, and dietitian to try to switch him to oral eating instead of enteral (through a g-tube) feeding. I kept a 3 day chart of Patrick’s diet and learned that he’s eating just under 1600 calories a day. The goal is 1800-2000 and therefore, a few more bites at each meal and he may just be there. The log showed that he needs to get more protein into his diet, which sounds challenging since he’s still struggling with typical meats. But I introduced him to fish while Brian was away. (Brian doesn’t like fish). And to fish sticks. And he loved them. And, out of the blue, Patrick started actually eating roast which gives me hope that if I can just get the meat tender enough, he might be able to eat it. Meanwhile, I we are supposed to be encouraging him to eat the proteins he likes like soy cheese and hummus and lunch meat. (I have taken to buying a few of those little buddig lunch meat packets and sometimes just handing one of those to him to snack on.) Knowing he’s a touch allergic to soy, I switched to sunbutter, which was received with lots of pleased “mmm” sounds.

But the mission that really turned me into a basket case this past little while has been trying to make plans for Patrick to go to school. I had the chance to talk to his classroom teacher and also to the school nurse. And the vibe I got from both was worrisome. They both seemed totally great at their jobs. And they both seemed to feel completely in over their heads with Patrick. In fact, both asked me why exactly Patrick wasn’t in the medical hub when it was obvious that he has such big medical needs.

I had long conversations and I wrote long e-mails and I did everything I could to make people talk and work behind the scenes. But I couldn’t do what was really the most needed until today.. I couldn’t meet with the school. I miscalculated. Brian offered to send me to visit one of my dearest friends, Lindy, who lives in Seattle. Her family housed us through I don’t know how many checkups at Seattle Children’s while Patrick was waiting for transplant there. And when we moved our listing to Nebraska, Seattle became too far to travel. I haven’t visited in 2 years. And so, since he was going to be away for a long time and since we didn’t swing a family vacation this year, he offered to send me out to visit.

I wasn’t sure as I was getting ready to go that this was a wise choice, this travelling alone with Patrick when my husband was gone and I had to pack and get us there on our own. It didn’t go well. The day before we left I was anxiety personified. And I went to bed wondering if I’d completely lost my mind.

Thank goodness it was a visit to a friend who helps me piece my sanity back together. It was good to catch up. And it deserves its own post. But as usual, Lindy helped me to talk and work through some of my struggles. And Patrick basked in the love of this amazing family.

And then we came back home and dived into madness again. I didn’t even get to unpack for like 36 hours, things were so busy.

Yesterday I tried to juggle back to school shopping and phone calls and e-mails with Patrick’s medical team and cleaning the house and unpacking and making quality time with my son who is about to leave me during the day. And there weren’t enough hours in the day. And Brian was going to be home in a couple of hours.

And then… Brian’s plane got delayed. And I kept working. And the flight kept getting pushed back. And I started to feel guilty because I started to wonder if my prayers for there to be enough hours in the day were resulting in airport delays. But I just kept at it and soon enough had been done. Patrick was in bed. And my amazing respite worker had come over on no notice to sit with him so that I could go bring Brian home.

And I’ve decided this post is getting too long and so I’m gonna wrap it up with just this thought because today deserves its own whole post too. But here’s the thing…

I’m recognizing that I’ve been just getting by for a very long time. Almost a year. And now that school is on the horizon, I’m trying to piece my life and sanity back together. I’ve started to go back to therapy. And I’ve started to recognize that to let go of this crushing anxiety I’ve been carrying, I have to stop just shoving it down deeper inside.

When you’re just surviving, that’s what you do. You put it down deep as far as you can so you don’t have to look at it and you just carry it with you while you move on. Like when you are at the store and they hand you a receipt and you don’t have really anywhere to put it so you tuck it into your purse. And before you know it your purse is all filled up with wadded up papers and wrappers and odds and ends of spilled things. And you just keep carrying them around because it takes effort to get things back out and look at them and figure out what to keep and what to throw out. That’s where I am. I’ve got all these things tucked down because I didn’t have anywhere to put them. And I’m hoping that I can get them back out and let some of them go.

So you might see me a little bit weaker for a while. It’s ok. That means I’m trying to work through some things. Anxiety is part of who I am. I’m pretty good at squaring my shoulders and pushing forward. But when I get a second to be myself, I’m going to need to work some things out. And it might look messy while I get through it.

Transplant Day 216-218 and the Port

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.

Transplant day 215 and the School Placement Meeting

I find I procrastinate blogging when I am having a hard time processing something emotionally. I’m finding this subject hard to write about. This past week hard to write about. And I was kind of relieved by a brief outage in the blog that made it so I couldn’t write. But if I don’t get this down soon, then I won’t get past it to the things you want to know about. So here goes.

I’m behind in blogging and, given how much has happened, have decided to do some belated day-by-day catch-up. So in this post, you’ll be travelling back with me to June 3. The day of Patrick’s school transition meeting.

Actually, let’s back up to the day before it. On June 2, I took Patrick for his end-of-year kindergarten assessment. We got delayed leaving because it was also lab day and so we arrived with breakfast still in hand because we’d just made it. That’s ok. Patrick tests better when he’s eating.

I sat in the corner and read scriptures on my phone and half-listened. I actually feel like the test was pretty representative and that he did pretty well. It also pointed out to me how much he still struggles. He aced letters and letter sounds, starting sounds of words, and read a few sight words. When asked to write words, well, first he is only identifying parts of words. Second, writing is one of those things that his brain injury makes hard. His teacher pushed him to write starting sounds, which I was pleased with. And he showed her that he still knows pretty well. He struggled a bit with sounding out words, too. His speech delays get in the way there sometimes. But I thought he did pretty well, for him. He counted to 26, though he almost forgot 16. He counted 20 objects. And then he avoided the other math questions.

It felt like a pretty good representation of his abilities as I listened. And when it was done, his teacher kind of talked through the results with me. As expected, he’s better with literacy than math and writing is a big obstacle. She told me that she was worried that he was not going to do well in a writing-focused first grade classroom and I started to fear that I might need to think differently about what I was going to ask for in the placement meeting the next day.

Like I wrote before, the week before the nurse had given me a heads up that Patrick no longer qualifies for medical hub services and so he’d need a special exception to attend Whittier. That was my preference, though I wondered if there might be other better options I didn’t know about. I knew I didn’t think he wouldn’t do well in a typical first grade classroom in a school without support.  He is so far behind the rest of the kids in his kindergarten class after this year.

So, Wednesday morning rolled around. We were combining getting ready for our trip to Nebraska that evening with getting ready for this meeting. Brian tried to sneak in a work call and it seemed that we were going to be quite late. How we managed to find time to still go pick up Dunkin’ Donuts I don’t know. But I do know that I was on the brink of a panic attack when I’d imagined doing that and then didn’t think we could. I’m not so good with change.

Anyway, we dropped Patrick with my mom and then met with the team. At first, we went over Patrick’s current abilities. Strengths and weaknesses. Learning style. Kind of went around the table and his teachers and therapists talked about what he’d accomplished in the past month and where he still needs to go.

And then it was time to let the district representative go over placement options. She offered 3: 1) Repeating kindergarten, 2) A regular first-grade classroom with an aide, and 3) a self-contained classroom called a functional academic classroom.

We’ve talked about repeating kindergarten for quite some time now. When we got home from Nebraska, it seemed inevitable. But Patrick has made a lot of progress and he’s already one of the oldest in his class and this just didn’t seem like the right choice for him.

Then the principal explained why she didn’t think a regular classroom with an aide was a good placement choice. (Please note: the principal at Whittier is one of the kindest, most concerned administrators I’ve ever met. So when she shared this, it was full of empathy and a sincere thought in Patrick’s best interest.) She expressed concern that Patrick would get frustrated with being so far behind his peers. That he’d need a lot of pull-out time. And that having an aide hovering would feel limiting and restrictive to him. Patrick’s teacher had pointed out to me that he often stopped and tried to get her to give him answers or help in his test because he is so used to it.

Then they told us about the functional academic classroom. How it provided a smaller class size and lots more adult support so they can accommodate different learning styles. How the school is closer to our home. How it used to be a medical hub, too, so the environment there is accepting and inclusive. How amazing the teacher is. How they have often sent students there to see them thrive. How some of the IEP team also works there so we would have some familiar faces willing to advocate for him.

We also talked about placement at the school by our house. They gave me lots of pros to that, as well, but I knew it wasn’t right. That he’s not ready for that.

I knew as they talked about the other classroom that they were describing what will probably be the best place for him to learn. They reassured me that being pulled out in a self-contained classroom doesn’t have to be a long-term thing. That he might only need a couple of years to make up for what he’s missed.

But then, I started to imagine Patrick and the little friends in his classroom who have loved him so sincerely. How their faces light up when they see him. How they hold hands on the playground. And I started to cry. I HATE that I cry. But, as much as I know that academically this classroom will help him, I don’t want to see him lose that acceptance and friendship. And it is a total leap of faith. (One I am having a hard time making.) to believe that starting all over again in a new school isn’t going to set him back socially. Especially if he isn’t in a regular classroom. All the inclusive activities in the world aren’t the same as being in the same class.

And besides – it means giving up the amazing people at the school Patrick’s been attending. The familiar faces. The rockstar IEP team. The sensory room and PT gym. And my little oasis next door where I’ve been walking and studying and praying while he’s in school.

So – the meeting ran a bit longer because once I had tears on my face, they were trying to comfort and reassure me. Which made me feel stupid because I know my reaction is emotional. The logical part of my brain knows what’s best here. I’m already thinking of that as his new school. But I’ve got to find a way to make sure that all the i’s are dotted and the t’s crossed to send him there. And make sure that my fears don’t rub off on him.

And once the meeting was over, we sent Brian off to a meeting at work and I went and finished packing for Nebraska. And I was completely distracted all afternoon.  And we were up till 2 a.m. for reasons I’ll describe in the next post.

And I’ve stalled writing this blog post because I still feel conflicted and unresolved. And a bit guilty that I didn’t pull off more of a miracle keeping him up with his class. But here it is. And I’m gonna post this and start another right away.


Transplant Day 180 and School


This picture was taken 6 months ago at Pumpkin and Mustache Day in Patrick’s kindergarten class. I didn’t know it then, but the Halloween parade and party the next day would also be his last day of school.

6 months ago, I tucked him into bed and then I went and wrapped up his birthday presents and I went to bed, but before I fell asleep my phone rang and our lives changed forever.

I dare say, at least as far as I can judge right now, for the better.

Today, I had an IEP meeting with Patrick’s school. Can I tell you what an amazing school he is in? They were completely behind me asking for a slow transition back into regular school. In fact, they were good with just about everything I asked them to consider. This meeting was amazing!

Here’s the gist of things. There is a month left of school and Patrick’s immune suppression goals have been adjusted down because it’s been long enough since transplant to try. And the transplant team said that about this time we ought to consider starting to ease him back into the normal life that they did the transplant to hopefully give to him.

So, after a very thorough discussion today, the decision was made to start letting Patrick attend school for an hour each school day. He’ll attend the last hour of every day. He’ll spend the first half of that time working with a special education teacher to help him to make up as much ground as possible. And then he’ll spend the last half of the day with his kindergarten class so that he can work on relearning the classroom routine and social skills. Also, once a week, I’ll bring him in a little early so that he can spend time in occupational therapy as well rebuilding his strength, working on writing and other fine motor skills, practicing eating, and so forth.

Because he’ll only be in school part time, he’ll also still qualify to work with his in-home teacher.

And, when the school year is done, he’ll take a short break, and then get to participate in the extended school year (or summer school) program this year at another medical school that is actually even a bit closer to our home.

The mood in this meeting was so positive. I genuinely believe that this team is happy that Patrick gets to come back to school and eager to help him succeed in every way that they can. How many people come out of an IEP meeting saying that?

That doesn’t mean that his IEP meetings aren’t still intense. There is a lot to coordinate and I am constantly amazed at the efficiency with which they run these meetings. (Also, with their stamina to do so many back to back to back at this time of year. They had already done several that morning with several more to go.) We made plans for how to drop Patrick off and what to do if classmates are sick and an aide to be with him in the classroom and what physical activities he can participate in and what to do when he needs to stay home and how to make sure that he gets the absolute most bang for the buck out of his hour a day at school.

For the rest of this school year, they’ll be reimplementing the amazing IEP that they wrote for him the week of his transplant. Then we will reconvene in a month to figure out where he is on his goals and what the best plan for school next fall will be.

The most amazing part? I thought we’d be waiting a week or two more for medication changes but the team in Nebraska says that because he kept swinging too high, they brought his dose down and he’s already there. That doesn’t mean he’s not immunocompromised. But this is about the best it’s gonna get for a while and so we might as well let him live.

We are taking the next few days as a family to celebrate Patrick’s 6 month transplantiversary and half-birthday (because, face it, transplant is an awesome birthday gift but a sucky birthday party.)

And then on Monday, Patrick starts school.

I’m trying to wrap my mind around gathering all of the supplies, emergency plans, paperwork and other little details I need to have ready by Monday at 10:45 a.m. I’m hoping this is as good of an idea as it sounds. That he has the strength. That he can stay healthy.

It’s strange to think that a month ago, I answered a phone call and our lives stopped and reset.

And now, 6 months later..to the day.. we’re trying to kickstart life again.

Patrick is bouncing off the walls excited.