**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.”
It’s been one year since Make-a-Wish Utah granted Patrick a trip to Disneyland. When I look back, in some ways it’s hard to believe a year has passed. But mostly, that seems like an eternity ago. So very much has changed in a year.
I’ll be honest. We have known for most of Patrick’s life that he was eligible for a wish. You don’t end up on a transplant list, really, unless your condition is considered otherwise terminal. But we were trying to put that off as long as possible. We wanted Patrick to understand that he was being given a wish. We wanted it to mean something. To not feel wasted on some passing childhood interest. And, more than anything, to be something he’d remember doing.
But two years ago, early in September, Patrick’s central line clotted, sprung a leak and was infected. They had to pull it, but then the surgeon couldn’t get a new one into place. We informed the transplant team of the difficulty. And they took his name off of the transplant list. Without a place for a central line above his heart, the transplant surgery would be impossible.
We’d known that scarred veins was a problem nutritionally. But we didn’t realize that it made the transplant surgery impossible. And we realized that we were at the end of a road.
The transplant team told us to get on a plane right away and we flew out to Omaha where some very brilliant and very brave doctors managed to get a new central line in place. But now we knew. We were that close to losing the only treatment option that didn’t end in Patrick eventually running out of good veins and starving to death.
And so – we made a palliative care and hospice plan. And we put in a request for Patrick to Make a Wish.
A year later, we headed to Orlando, Florida. That week was one of the most magical in our lives. We stayed at the amazing Give Kids the World Resort. We were given the royal treatment at Disneyworld and Universal Studios. We chased down characters for Patrick to meet. We rode roller coasters.
In the village, we celebrated off-season Halloween and Christmas, rode ponies, took carousel rides at almost every meal. We ate ice cream for breakfast. We ordered Patrick’s his first whole pizza. (Made entirely allergy safe and delivered to our door.) We raised a star in Patrick’s honor.
There is no way to describe in words what a wish trip is like. Honestly, other wishes sound cool. But the reason this one is so popular is that it is the ONLY thing like it.
Every child who is granted a wish by our chapter of Make-a-Wish raises a glass star to the ceiling of the Make-a-Wish building. Family and friends are invited for a special ceremony.
We never imagined that, before we’d be home long enough from our trip to schedule the star-raising ceremony. Yet, found myself on the phone with Patrick’s wish granters the day after his transplant telling them just that. We’d need to reschedule.
Because of recovery time and immune suppression, we actually didn’t get around to that star-raising party until just last month. The experience was kind of surreal.
Being so much later, it was a bit nostalgic to be back in that building. They took Patrick’s guests on a tour of the building like the one we’d received when he made his wish. And then, they let him use his magic key to open the wishing room in their castle tower. We reenacted a bit for them what had happened as he made his wish.
When Patrick made his wish a year and a half ago, they invited grandparents and parents to make a wish on his behalf. Brian and I made what we felt were practical wishes.. For Patrick to live a happy and full life. (Knowing that it might be short.) Grandparents wished for Patrick to receive his transplant. And, honestly, I thought to myself, “I’m so sorry we’ve misled you. Patrick has waited too long. He’s been listed for most of his life. Almost a year and a half at the center that had promised a match before a year was over. It’s too late. That is why he is making this wish.”
And yet, last month there we were… standing in that same room. Patrick free from IV’s and most tube feeds. Having just gorged himself on McQueen cake. Transplant done. In essence, made whole.
I am a witness that prayers are answered. Miracles are real. Wishes come true.
Because we live in a mortal world where test and trial are necessary for our growth, that doesn’t mean that things are perfect. Perfection is something for the next life. But God’s power is very, very real.
We owe a great debt of gratitude to the wonderful people at Make-a-Wish for the unbelievable gift that they gave to us. To the angels at Give Kids the World to helped to make it come true.
Patrick decorated a glass star and then used a string and pulley to raise it to the ceiling. Fitting his style, they said he raised the start faster than any child they’ve ever seen. Almost not giving time to notice the lyrics to this song that they played. Almost. Which is good, because if you were listening it brought tears to your eyes.
When you wish upon a star
Makes no difference who you are
Anything your heart desires
Will come to you.
If your heart is in your dream
No request is too extreme
When you wish upon a star
As dreamers do.
Fate is kind
She brings to those who love
The sweet fulfillment of
Their secret longing
Like a bolt out of the blue
Suddenly, it comes to you
When you wish upon a star
Your dreams come true
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 disorienting to realize that next week is kindergarten’s last week of school. We only just started and it’s almost over again. I feel really bad to be just gearing up while teachers are working to try to take care of the mountain of things that need to be done for the end of the year, I’m here trying to squeeze every last drop out of the few weeks that we have available to us.
I am amazed at all that they ARE doing for him, though. For example, I noticed that Patrick’s class was at recess every day when we arrived. So I asked and they revised his IEP to allow him to go to recess with his friends every day. He is in HEAVEN getting that extra time with his friends. And I understand that he is doing better in class, too, as a result.
Also, I’ve been working all week with his special education teacher on getting the forms completed for him to be able to participate in Extended School Year (a.k.a. summer school). They hold 3-day weeks on 4 weeks during the summer. He’ll attend in the morning. The goal is to keep up the momentum that has just started again.
They did offer one amazing thing that I hadn’t even imagined as a possibility. There is a therapy pool at the school. And, because by the time summer school starts he won’t have a broviac line, Patrick’s doctors have given him the ok to work in the pool. It feels like this little piece of normal… my son being able to be in the pool during the summer. Even if it came about in the most abnormal possible way.
Speaking of doctors, we had a follow-up with Patrick’s GI this week. His dietitian came in, too. It’s the first time we’ve seen her since transplant. I wondered if she was amazed to watch him eat a kids meal while we talked. His growth charts look amazing. I think it’s the first time I’ve really looked at one post-transplant. He’s growing at a normal rate. He’s in the 50th percentile.
They ordered some labs to check to make sure that his vitamin levels and overall nutrition are still good as he’s learning to eat on his own, but doesn’t exactly have a traditional balanced diet yet.
Also this week, or maybe the end of last week, I talked to the team in Nebraska about Patrick’s next follow-up with them. We scheduled an appointment in June to replace his central line with a port. (This is why he’ll be allowed to swim, by the way. No more external central line.) We will be going out the first week of June and it will be an outpatient procedure.
I thought we’d have clinic, too, but it sounds like they feel we’re doing a great job communicating by phone and don’t need the extra visit.
So it sounds like we have a game plan for our summer. At least the start of it. Patrick’s last day of school is the last Friday in March. June 1, he’ll have end-of-year testing. June 3, we’ll meet with the school to make plans for next fall. That night, we’ll get on a plane and fly to Nebraska. The next morning, he gets his port and we come home that weekend.
The next week, Brian leaves on a business trip to Norway. And the week after that, Patrick will go to his first day of summer school. He’ll have two weeks on, then off for the July holidays. Then back again. Brian has a pioneer trek with the youth in July and another international business trip in August. And before we know it, it will be time to come back to school.
I’m trying to pull together some materials to keep working on mommy school in the down-days. I’ve let Patrick develop some lazy at-home habits this month but, really, we have a lot of ground to cover over the summer. Hoping that the extra respite time while he’s at school will give me a breath of energy to keep up with all the rest.
Hello from “The Hotel on the Hill.” If you are new to our blog, this is the nickname for Primary Children’s Hospital which is situated in the foothills of the Wasatch mountains on the edge of the Salt Lake Valley.
We have been here since yesterday afternoon. Here’s why.
A few weeks ago, Patrick’s nurse checked his temperature when he came to draw his morning labwork and it was a little high. Later that day, his labwork showed elevated liver enzymes and a slightly higher white count. These two signs together usually mean an illness and we thought that maybe Patrick had a bit of a stomach bug. The numbers stayed high for a couple of days, then went back down. We called Nebraska Medicine and they said they would check some viral studies to see if something was brewing. No one seemed too concerned.
For the past several weeks, this pattern has repeated itself. Once or twice a week, Patrick’s temperature has gone up. His liver enzymes go up. Sometimes his white count goes up. Sometimes it doesn’t. And Patrick never got sick. And no one ever seemed really worried.
Well, this Tuesday, when they checked Patrick’s labs, his liver enzymes were up by almost 100 points. His white count was normal this time. His temperature was 99.7. He was acting fine. But they also finally got around to those viral studies which showed no concern for the viruses they suspected might be to blame. Also, Patrick’s prograf level was a touch high and the transplant team decided to drop his dose by half.
I texted Patrick’s local doctor, Dr. Jackson, to let him know about the change and that night he called me. He suggested that the one other thing we hadn’t checked for was infection in Patrick’s central line.. maybe some small amount of bacteria seeded there. So the next morning Patrick’s home nurse came by and drew cultures and repeated liver enzymes and prograf levels. The liver tests came back pretty early. The enzymes that had been high were the same, but another marker was now up, too. And Saturday morning, as we were getting ready for the day, we got a call from the GI fellow on call who said that Patrick had tested positive for a line infection.
Well, Patrick was still feeling fine. So we asked if we could still take him to the Make-a-Wish easter egg hunt we had gotten him up early for. Then I called Dr. Jackson to figure out how exactly to proceed. We talked about starting treatment at home, but Patrick needed some vancomycin.. a drug we have a love/hate relationship with because it clears infections, but Patrick’s pretty allergic to. It gives him a rash, so he has to have benadryl. It also makes his belly quite sick and we didn’t know how a new gut would take it.
So, we made a plan to bring Patrick inpatient for the weekend while we start antibiotics and figure out what comes next.
Because he is still so soon after transplant, we are making our first stay in the cancer/transplant unit, or immune compromised unit. (ICS). At first, I was worried they might kick us out after we went through all the work to make an infection-risk-minimal admission. They don’t accept transplant patients after the initial immune suppression and they didn’t know us and thought maybe someone was sneaking us in. But once they heard “5 months since transplant” it was ok.
They are experts with central lines here, which is nice. They don’t do g-tubes or ethanol locks often, though. Apparently only short gut and related GI diagnoses get the full gammut like we do. So there’s still some teaching to do.
The nice thing is that they keep the rooms super duper clean and, really, the nursing staff here is in general a little more experienced. The techs are really on the ball making sure things are cleaned up, diapers charted, extra food collected, teeth brushes, baths given, etc. There are things in this unit that I would have killed for in Nebraska. Like washing machines down the hall. (Last night Patrick had a diaper leak and they just showed me to the washing machines so I could clean it up.) And bathtubs. Patrick was very excited to take a bath here this morning. And needleless hubs with scrub caps and a policy of scrubbing the hub for a full 15 seconds and then letting it dry.
The room is smaller, but these rooms feel like home. And the parent bed is comfy. And the view is spectacular. And the cafeteria is just downstairs and still serves most of our comfort foods, even though they’ve just remodeled.
So it’s different, but it’s home.
This has been a very long week. We are all very tired. Monday night, my cell phone rebooted and wouldn’t load its operating system afterwards. Brian plugged away at it every chance he got, but there was no fixing the problem. So I had a few panicked days where I could see abnormal labs but couldn’t text as I normally do to communicate with Patrick’s medical team. Thankfully, Google has amazing customer service and pulled off a warranty exchange before Friday.
Tuesday night, I started to get an ache at the back of my throat. I hoped it was allergies, but was pretty sure it was a cold. I woke up sure I was sick. So I masked and gloved up, stripped and washed all my bedding, did as much laundry as possible, clorox wiped everything in sight and just tried to muddle through with as little exposure to Patrick as possible. It took round the clock mask-wearing, lots of handwashing, lots of running outside or to another room to sneeze or cough of blow my nose, and lots of picnic lunches (so I could eat without breathing near him) to get through the week. Thank goodness family was in town visiting. Two nights in a row, Brian took Patrick to dinner with his family, leaving me home to rest, clean, eat, and breathe mask-free.
I was still sick and masked yesterday when we came up here. I was almost afraid they wouldnt’ let us into this unit with me sick… but I’m following the same precautions the rest of the staff here does so it turns out it was ok.
Thank goodness I am better today, though. My ears are so tender from wearing a mask all day and night that I can barely stand to wear my glasses and putting a mask on this morning to walk Patrick to the playroom almost made me cry.
It hasn’t been a better week for Brian, either. Coming home from work and taking Patrick away immediately is not easy for him. And he has some some busy weeks, preparing for some organizational changes heading his way.
So we were beyond grateful yesterday morning when Patrick’s doctor asked if we’d like to wait and come into the hospital at 1:00. We had promised and easter egg hunt and we had a great time. Make a Wish throws a great party and no one looks twice at you wearing masks and gloves and not eating any candy. Patrick was so very excited to meet the Easter Bunny. We got his face painted. We had a great time in line with the clown making balloon animals. (Have I mentioned Patrick loves clowns?) The egg hunt was only mildly interesting to him. He gets tired walking still and so running around hunting eggs wasn’t the most exciting idea.
The eggs were filled with candy and Patrick was a bit disappointed. But we knew we were headed to the hospital and were feeling generous and Brian had a coupon. So, we offered to let Patrick trade his candy for a prize and we headed to the Disney store.
We talked briefly about heading home and doing our chores but opted for some family fun time instead. We started at the Disney store where Patrick picked out a Mickey Mouse train set. Then we went to a built-to-order pizza restaurant and let Patrick design a cheeseless pizza. He loved it and scarfed it down and packed up his leftovers to go.
We left the mall and went for a walk around Temple Square. If you’ve never seen the gardens at Temple Square around the time of LDS conference you should, Especially in spring. They are amazing! Tulips and fountains and pansies and flowering trees raining white petals everywhere.
Patrick did what all little boys do… walked the borders of every fountain and ran away and climbed up into the bronze statues.
And then, it was time to come up to the hospital.
And it was strange being admitted to a new place that is different but familiar. We had an ok night. Patrick didn’t nap on schedule. Not a surprise. But after they gave him benadryl at 5, his eyelids got droopy.
And then, he woke up was very mellow the rest of the evening. We watched movies, played with syringes, cuddled on the bed. At 11, he seemed tired enough finally to sleep so I turned out the lights and he was out in 5 minutes. He slept all night except for diaper changes and woke up with the sun. (Much to my chagrin).
Rounds came early this morning. They said that he had immediately responded to antibiotics and his liver numbers were already trending down. No cultures have grown out, though, from the labs drawn right before antibiotics were started and we can’t quite explain it. The doctor suggested that another option for the off liver numbers being bacteria from Patrick’s gut gettiing into his liver through the gastric bypass created at transplant. I guess we’ll explore that more.
But the long story short is that Patrick seems to be responding well to treatment and shouldn’t be hospitalized long. And we’ll have more conversations about the cause of the problem and the fate of his line in the future.
It’s been a quiet Sunday. Patrick is so much calmer in the hospital now. I don’t know if that’s from practice being in the hospital and entertaining himself alone or because his sensory processing disorder is less of a problem since transplant or because his nurse last night started giving him all the used syringes and passed along in report to continue doing so and he has like 30 of them now, plus extensions to connect them to and that always keeps him happy. But he’s quiet and once we’d all had a nap we were all happier.
That was a lot of story to tell. I really should blog more often so you don’t have as much back story to read through. Oh well.
“Do you know deep in your heart that your Heavenly Father loves you and desires you and those you love to be with Him? Just as Heavenly Father and His Son, Jesus Christ are perfect, their hopes for us are perfect. Their plan for us is perfect, and Their promises are sure.” – Carole M Stephens, Relief Society General Presidency, LDS General Women’s Conference, October 2015
Tomorrow marks 3 weeks since Patrick’s last day of school. For most people, summer vacation is in full swing. For us, we’re finally starting to get our bearings. It’s been an unusual start to summer.
Things seemed smooth enough. I spent that first weekend after school ended gathering myself to start a tradition Patrick and I are calling “Mommy School.” Between therapies, Patrick has a LOT of “homework”. He’s supposed to spend 10 minutes every day doing eye exercises. He’s supposed to be practicing writing and cutting and and gluing and using a keyboard. We’re supposed to be strengthening his core, working on activities that use both sides of his body evenly, and encouraging him to cross midline. He’s supposed to be practicing telling me stories in various verb tenses, using articles, and correcting his use of pronouns. Plus working on vocabulary building, sorting skills, categorization skills, social skills, attention skills and on and on. All of this to help keep him progressing on his current trajectory which, discouraging as I may find it, is approximately two years behind most of his peers.
Except, it seems, when it comes to the alphabet. Patrick has the alphabet down pat and tested in the top 25% of his preschool class.
And so, this summer we introduced “Mommy School.” We’re doing an abbreviated letter of the day curriculum, since letters are what Patrick loves. Every week is assigned two letters and every day a word that starts with that letter. Then I go out and scrounge up books, worksheets, crafts, activities and field trips on that theme.
The first day of Mommy School went GREAT! Until, that is, Patrick developed a fever. The next day of summer break was spent cuddling a sick, feverish kid in a chair. He had a cold and we were grateful to be able to stay home sick like other children. By Thursday, Patrick had mustered the energy to play on his own again. But, by then, I was sick.
Our second week of summer break, Patrick and I were finally starting to be healthy again. But Brian wasn’t. And it didn’t matter if we were healthy or not because on Saturday of that week, my little sister was getting married in my backyard. So, I declared “C is for Camping” and we pitched a tent in the living room. Amazingly, this both occupied Patrick and kept the room clean while he binged on movies and we scrambled to finish last minute details on the house and yard.
We also sneaked in a couple of outings.. a family night at Red Butte Garden and a field trip with friends to the Natural History Museum. (I picked up a free month-long museum pass at the local library just so we wouldn’t have excuses to just stay home and work.) Besides, in order to get Patrick to let us work, we let him watch his birthday movies on endless loop, which left us all craving some family adventures.
The wedding went smoother than expected, though playing hostess and trying to keep Patrick from completely melting down about how his house was filled with children who were not sharing his toys with him kept me busy enough that I didn’t manage to take a single picture.
My sister was a beautiful bride and the happy couple truly looked happy and in love. Patrick eventually settled down with Grandma who let him fetch endless cups of water from the refreshment table and pour them all over himself and her and all went well enough.
Except that it turns out that maybe the bug that had Brian sick isn’t the one that had Patrick sick as I ran a fever all night.
So, Sunday we took a sick day and we stayed and home and did absolutely nothing except that Brian cooked us a delicious roast. The day was delightful and refreshing. Perfect after two frantic weeks.
Yesterday, I put together a week’s worth of Mommy School worksheets, made a chore chart, got Patrick’s TPN labs drawn and kind of regrouped. Then, in the late afternoon, I changed Patrick’s central line dressing and discovered that, much to my dismay, what had once been a tiny little hole in the clotted side of the line had grown big enough that I was worried it would pull off. But it was after hours and I wanted the head of the IV team to be involved in choices about the repair.
So today, we spent our kind of restart to summer day exactly as summer days seem to go for us.
Over breakfast, I made a bunch of phone calls to people at the hospital trying to find the best way to get the line repaired. Eventually, I sat down and had a little cry because I wasn’t getting in touch with the people I wanted and I knew we’d have to go to the E.R.
Then, Howie gave me a pep talk and a hug and a kiss. Then he talked to Patrick and helped him to gather the courage to get his line repaired. (He was terrified that it was going to hurt when they cut the broken part off of his line.) We headed up to the E.R. where our timing really was perfect. We didn’t wait at all for them to start working. Patrick’s line is a different brand than our hospital stocks because it was placed in Nebraska, so that complicated things and the repair took about an hour and looks a bit sloppy. But it will do for a clotted line.
And then, when all was done, we headed off to the Children’s Museum for a couple of hours. We managed to get there at a nice slow time on a nice slow day. Patrick actually got to enjoy exploring the museum and would have happily stayed there all day. His favorite spots were the Bob the Builder exhibit, the gas station, and the pretend E.R.
Eventually, we had to go because I was parked in a 2 hour parking space and, honestly, we both needed a rest. So we stopped in at daddy’s office to pick up the leftovers from a lunch he’d cooked for them today. And then we came home and convinced Patrick to nap by 4.
Which brings us to right now. Brian just walked in the door to a quiet, clean house and me blogging and said, “Now that’s a sight I don’t see very often.” Here’s to maybe a little bit more of this? Perhaps a few prayers for this line to hold out through the summer and grant us a little bit of peace ..and maybe even health?
Sorry to have kept you waiting for updates. As you’ll see from this post, it’s been a crazy few days.
First of all, if you haven’t heard word any other way, the doctors in Nebraska were able to get a new central line into the Superior Vena Cava and Patrick is back on the transplant list. I mean to post updates but didn’t expect them to order bed rest and minimal activity for the next days after the procedure and, well, accomplishing that is kind of a full time job where Patrick is concerned.
We checked in to pre-op at 5:30 a.m. which is 4:30 a.m. Mountain Time and we were all incredibly sleepy. Pre-op was the usual flurry of activity as we met anesthesiologists and got fluids ordered and labs drawn. (They had an amazing phlebotemist who managed to draw blood without Patrick even crying and on her first attempt.) We met the OR nurse whom Patrick loved so much he said she was “Kinda Jo”, in other words, put him at ease like his favorite child life specialist. He collected teddy bears and various and sundry medical equipment to use on the bears and charmed everyone in sight.
Then we got the meet the doctor and go over the plan.
The procedure it took to get us there absolutely terrifies me. I order to get around the blockages, they put a guidewire in through Patrick’s femoral vein and ran it up to his heart where they repositioned the veins in order to reach the right ones and get around the clotting and scarring. At least, that’s what I understood. He followed along with x-ray and ultrasound the entire way to make sure things went where they should.
What I really gathered from the description of the procedure is that it was insanely dangerous. As the interventional radiologist was going over the risks with us, I just kind of had to shut off the part of my brain that could process what those risks might mean and remind myself that without it, he had no long-term chance of survival. Instead, I honed in on the fact that he sounded confident in what he was doing and that, well, it just felt right. I couldn’t help but think that THIS was the reason we’d been impressed to transfer Patrick’s care to the University of Nebraska. Because they had doctors who had developed this technique to save access and save lives.
Knowing how difficult Patrick’s access can be, we all kind of hunkered down expecting them to need hours. So, when we looked up at the status board after just a couple of hours and see that they were closing. Then, sure enough, there was the doctor telling us that everything had gone well and that he had a new line in place.
As we understand it, this is a rare direct superior vena cava line, entering the vein directly after going through soft tissue. (Patrick’s GI is questioning this, so I’m getting a copy of the procedure notes so I can go back over what was done and we can understand it.)
He went ahead and put in another double lumen line for us. Because they stock a different brand, the line they had was rather large, a 9 french, but that could kind of be a good thing. Should be less prone to clotting problems.
He also us that this line is to, under no circumstances, be taken out without his approval. If Patrick gets and infection, if the line breaks, if it clots, whatever… the team at the University of Nebraska needs to get involved. Maybe they will teach the team here how to keep the site open. Or, maybe they will fly us back out again. Whatever happens, they do not want to have to attempt to repeat this procedure. We were told that, next to transplant, this is one of the riskier and more specialized things that they do at their hospital.
And by the end of the day, Patrick was back active on the transplant list.
The rest of the day was kind of crazy. Because of the risks of bleeding from that femoral access, Patrick was ordered to 3 hours of total bed rest with that leg completely immobilized. Knowing our child, we quickly agreed to request sedation for that.
At first, the sedation made things a little easier as we scrambled to attached fluids to the new line to keep it open. We also called to ask that his old line be removed while he was sedated (they’d left it in thinking it was still needed, but decided we didn’t need that to be done at home.)… and then scrambling to round up information about the new, different brand of line and repair kits, etc.
Patrick started to wake up just a little and was, well, cuddly. That’s normal for him, but normally I’m also allowed to hold him. This time, he had to stay in bed. So he settled for holding onto my head. For half an hour, he held my head as tightly as he possibly could. (Meanwhile, the doctor came back to pull the old line.)
About an hour in, the nurse decided to stop giving him sedation and just let what was in his system and me distract him. So, we played games on the tablet and we checked the blood pressure of the teddy bear and tried out a Nintendo DS. Meanwhile, Brian went back to the Ronald McDonald House to bring back TPN and to try to meet our delivery of medical supplies.
2 hours in, the doctor said that Patrick could sit up in bed and make sure his leg was ok with the extra movement. The post-anesthesia nurse was kind of tired of him tying up the space in PACU I think (they could only keep giving him sedation there) and so she discharged us to their extended care unit.
The extended care nurse acted as though she hadn’t received report from the PACU nurse, though. When we got there, she tried to insist that Patrick needed to stay lying still in bed for another hour because that’s what the orders in the computer said. And so, well, yes, I went a little angry mama bear on her and told her that I would not have agreed to come to her unit had those been the instructions.
And then we spent the next half an hour trying to keep Patrick still sitting up in bed, doing crafts, sipping water, and not chewing on or removing the COMPLETELY inappropriate non-pediatric pulse oximeter on his finger.
And then, I don’t know who talked to her, but the nurse came back in and cheerfully told us we could get Patrick dressed and he could be discharged. Like the nurse who I’d gone crazy on didn’t even exist.
Anyway, we were grateful for the dismissal as we had managed to squeeze in an appointment with one of the transplant surgeons at 1 p.m. and 1 p.m. is when Patrick was supposed to be cleared after 3 hours’ bed rest.
So, we hurried over to the Intestinal Rehab Clinic and checked in for our visit and a little while later, Dr. Langnas joined us. We explained to him our concerns about whether or not waiting for a combined liver/intestine transplant might be increasing Patrick’s wait time. He listened to our concerns and then explained the benefits that he sees for Patrick in the liver listing. Then he promised us a future date where, if Patrick has not received a transplant, he will take our concerns back to the transplant review board for reconsideration.
The rest of the day we spent trying to help keep Patrick down. We went back to the Ronald McDonald house again for a little back and let Patrick play in the playroom. Then, in the interest of some forced holding still, took a drive instead. Patrick heard us mention the temple as a possible destination and voted for that. So, with our bruised and bandaged and druggy little boy, we went and visited the Mormon Trail Center and Winter Quarters Temple grounds. Then came back on time for a yummy lasagna dinner courtesy some generous Ronny House graduates, then went to bed early and exhausted.
After tucking Patrick into bed, it hit me just how serious what he’d been through that day and week really was. Another case of him surviving against the odds, an unquestionable miracle. And a VERY close call. I shed a few tears of fear and relief that night, said a prayer of gratitude, and went to bed.