Tag: home health care

Transplant Day 149 and how liver enzymes meant a weekend in the hospital

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.

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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.

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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.

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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.

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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.
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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.

I turned on a broadcast of the LDS Women’s Conference right after Brian left to go get things cleaned up and packed up at home. They started off with a video presentation of a song that Patrick knows from church, The Family is of God. View the video here. Knowing he loves these things, I pulled him up on my lap to watch. He snuggled right down and his eyelids started to droop. The song ended and I told him to stay cuddled and I’d get him a show on his tablet. Well, his tablet was slow and before I had a show loaded, he was asleep. He slept on my lap for 2 hours. I got to bask in a quiet evening of gospel and sisterhood and uplifting messages about the importance of motherhood and womanhood and family. The entire conference is available to watch, read, or listen to here. Largest women’s conference in the world. Totally worthwhile and inspiring if you have time.

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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

 

Transplant Day 132 and a follow-up visit in Nebraska

I am writing from the window seat of a room in the Omaha Ronald McDonald House. Today marked 1 month since they told us that he could go home to Utah. And so, today, he had a follow up visit to see how things are going.

It’s been an interesting few days. First of all, can I say how much it broke my poor little brain to try to pack for this trip? Travelling with TPN was hard. It took lots of big luggage and days of coordinating Fedex deliveries and special planning and packing for airport screening. In the past, I brought every suitcase we own packed to the 50 lb limit and also have at least 4 boxes shipped. This time, well, what I needed to bring was not iV supplies. It was formula. And food. I had to pack snacks.

i got everything gathered to put into suitcases and I looked around and I had too many suitcases. And the problem flustered me so much that I had to just go to bed and sleep on it. I had nightmares about not being properly packed. Then, I got up in the morning and I filled the extra space in one suitcase with pillows and blankets and I decided that we didn’t really need one bag as a diaper bag and another one to carry my electronics and medicines. And none of the bags weighed over 40 pounds. And it was all ok.

In fact, it was easier to get to the airport. Brian had flown in and out of this city enough times to know which flights would be fuller and have a busier airport and did a great time picking us a slow time in the airport. Patrick and I donned masked. (I wore one so Patrick wouldn’t feel so alone).. and i gave him a new pair of touch screen capable gloves. And we strode into the airport not struggling under the weight of overfilled bags.

Brian also had applied for TSA precheck status which meant screening for him and Patrick went much more easily. I still had to go through a regular line which felt, well… very strange. To leave them and go off on my own. But things were simpler. Patrick’s many medications had to be checked in the mass spectrometer.. but that is so much simpler than checking a cooler of IV fluids that they still were done by the time I got to them. They’d have beaten me had they not decided to let Patrick be screened in his wheelchair/stroller.

The flight was difficult. Patrick really has a hard time not playing with the window shade and keeping his feet off of the feet in front of him. Under normal circumstances, you can redirect this. But his steroids make it very hard to change Patrick’s mind once an idea enters them and we had a few stretches where I just had to hold onto him to keep him from hitting the seats around us until he settled down. It wasn’t all that way, though. He ordered himself a “diet water” from the flight attendant and had a happy snack time and we played with stickers and some mommy school games I’d laminated and brought along. Patrick’s desire to learn still overpowers most other things. And thankfully, the flight was only 2 hours anyway.

We rented a van and drove to the Ronald McDonald House. It was strange to be back and feel so at home here. Before out of state clinic visits were big adventures in new places. Now, well.. this is just a second home. Patrick, in fact, loves pointing out that we are coming home when we come back to the Ronald McDonald House each time we do. He is very mad at me that we are not restocking the fridge with his favorite foods and are eating out instead.

However, I like him eating out. He figured out he likes hamburgers last week and I love seeing him eat half of a hamburger plus some fries when we get him a kids meal.

We are aiming for a more vacation-like trip. Last night we went out and explored a shopping district called Old Market that we heard about but didn’t brave in the cold. It’s kind of a cool atmosphere. Like a toned down Pikes Market in Seattle, but with fewer people. And well patrolled by police. They allow street musicians, but not others begging on the corner.. so you could enjoy that ambiance of that little addition. It is warm here and nice to be out.

We did stop at the store for a few snacks and staples (and some sugar-free soynut butter that I haven’t been able to find in Salt Lake). And we stayed up snacking while waiting for meds time, even though Patrick was far too tired and overexcited about being here.

Today’s been a really nice day. In the 70’s, so we have been able to be out in short sleeves. We have never caught nice weather in Omaha before. We got up with the sun, as Patrick always does.. and made it out to go to the zoo early. We really love this zoo and find something new each time. This time it was the otters that caught his fancy. He didn’t like the sea lion training, though we did. And he was tired and wanted to go back to the room early, but we didn’t let him.

I’ve been tired today. At midnight last night, as I refilled Patrick’s formula feeds, I noticed that I’d left the charger for his feeding pump home. And I tossed and turned worrying about it all night. Trying to think who I could borrow from and what it would take to get homecare set up again in this city for just a few days. It was top priority this morning. It wasn’t hard to fix. I made a call to our homecare company who said that they often will lend chargers to people in a similar situation. So I called Children’s Home Health, the company we used while we were here, and explained the situation. They said no problem and to come pick up a pump. I signed a form saying we’d pay if it wasn’t returned and they gave me an envelope to return it in since they won’t have open offices the day we leave. And that was that. Easy peasy and why did I worry so much?

Oh well..

Patrick’s clinic appointment was this afternoon. That was also easy peasy. We checked in and there was some confusion about insurance now that we are more than 3 months after transplant.. but they voted in the end to leave that for the financial folks to sort out. We weighed Patrick in and he’s gained again.. and even 22 kilos, or almost 50 pounds.

The doctor we saw today was the surgeon who did Patrick’s transplant, Dr. Grant. This made me very happy. Not only does she, literally, know him inside out but we really seem to click as far as philosophy of care. She said that he was doing remarkably well and to keep on this same path. They were happy to hear he was eating and the dietitian adjusted his feeds again so that he’ll have 8 hours without tubes in a day… I had to promise to keep him drinking in that time so he stays hydrated.

Dr. Grant asked what we were doing about school. We confessed that we hadn’t dared send him back yet and were setting up home school instead. She actually seemed pleased with this answer.. she kept saying “It’s only been 4 months.” Pointing out that it’s easy to overlook how new this all is because he doesn’t have an ostomy or a feeding tube in his nose as most kids do this short time after. She started out recommending summer school or back to school in fall.. then conceded that maybe sending him back sometime after spring break so he can finish this year with his same friends and teacher would be a good idea.

After his physical exam, she pointed out some stitches we could have removed next time he’s sedated. And she said that she doesn’t think he still needs any physical restrictions. Monkey bars here he comes.

And then she said the words we’d dreaded. “So what do we do with this central line?” I decided to just speak my mind. I told her that we were ok with him not needing a line, but worried removing the one he has given how hard it was to put in and the chance of losing that access. I said this once before to another surgeon and was told I was being overly conservative. But Dr. Grant suggested just what I had imagined as the best solution in my mind: A port. This is a central line but one that stays under the skin except when it’s needed. There’s a small disk that can be accessed with a needle.

The nice thing about it is that it isn’t as prone to infection as a broviac line. It won’t need a dressing and he’ll be able to bathe and swim and get dirty.  Also, it means that Patrick’s labs will be easier to draw and less painful, since they can numb the site. The disadvantage is that it’s still a central line and runs a risk of infection and needs careful monitoring for fevers.

We made a plan to come back after the end of the school year and have them change Patrick’s broviac line for a port. We’ll leave that for a little while longer till we know it’s safe, and then remove it.

We won’t need to come back to Nebraska until then. Oh, and labs can now be once a week.

So overall.. still good news.

And now it is on with our mini-vacation. We have had a snack and a nap and are now headed over to the hospital for movie night.. then back here where some nice church ladies are cooking us a turkey dinner.

I don’t want to delay the fun, so pictures will have to come in a later post.

Transplant Day 110 and Home

Home is a name, a word, it is a strong one; stronger than magician ever spoke, or spirit ever answered to, in the strongest conjuration. – Charles Dickens

I am blogging tonight from my own bed. Patrick is in his bed playing instead of sleeping. Brian is at the computer in his office. We have been home since Saturday. It feels good.

I’ve learned a lot about home in the past several months. I have learned that the essence of home: the part that’s made of love and family and faith and shared joys and struggles… that part is fairly portable. For we made homes out of a variety of hospital rooms and out of a small, overcrowded room at the Ronald McDonald House. Brian commented that coming back to our house wasn’t home. Home was where we were, and when it would come back to us every couple of weeks, it really did feel like it was home to be all together.

But there is something about us all being beneath our roof own homemade home together that is very comfortable. It is nice to not share walls with anyone. To not share a fridge or a kitchen or a dinner unless we choose to. It’s nice to let Patrick leave me and not worry about where he has gone.

Picking up and moving on under 24 hours notice is, well, stressful and crazy and very disorienting. After my last post, I had a horrible time sleeping. I’d wake up for something little and then lie awake for an hour thinking of all that needed to be done for us to go. None of us slept well. And when Patrick was up early, we just got up and got to work. We had accumulated a lot of stuff over the 3 and a half months in Nebraska and packing it up in an order that would make some sense and be accessible during the trip home was no small task.

We rented a mini van to bring it all home in. Brian called it “the more comfortable version of a U-Haul.” With stow and go seating, he just put the seats flat. And we filled it. And entire mini van.

We tried to steal some goodbyes. Patrick’s teacher came over and brought some gifts and read one last book with him. We met up with the friend from church who helped to organize all the offers of help and meals and such that came from them for a playdate. (Patrick pulled out his g-tube by accident and I very cooly popped it back in right at the park.)

And then, I got THE phone call saying that everything was supposedly in order and we could go.

So we finished loading the van and cleaning out the fridge and we checked out of our room and we started driving.

We went about a third of the way the first night.. crossing most of Nebraska. Patrick did a lot better than I expected. We packed the back seat with pillows and blankets so he couldn’t lose his toys and I passed him snacks as we went along. I put on my bluetooth headset so I’d be able to answer calls hands-free and turned on an Audible book and we just drove and drove. It took me some time to figure out how to manage cruise control while following but eventually got the hang of it.

We checked into a hotel in Sidney Nebraska around 9 p.m. We made a mad scramble to get Patrick’s medications and formula somewhat on schedule. Then we went next door the Perkins for dinner. It was the only restaurant in town open that late and a game had just let out so they were busy and Patrick was barely staying awake.. But he really wanted his ham and potatoes and toughed it out.

And then we crashed and the big comfy hotel beds just felt SO GOOD!

Patrick was up early again the next day and so we got up, too, and got bathed and dressed and meds done and then grabbed some breakfast. Right after the 9:00 meds were given, we hopped back in our cars and drove again. I finished one book and started another. We convinced Patrick to go ahead and take a nap.

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I missed the sign saying we’d entered Utah. I was too busy trying to catch up to Brian after some slow trucks and a steep canyon had separated us a bit. And then, as I caught him, I started to notice that I recognized what we were passing. We were almost home. And having to stop to go to the bathroom in Park City about killed me because I knew how close we were.

We arrived home about 7 p.m. on Saturday evening to find yellow ribbons tied to the trees (that made me cry.) The house had been scrubbed clean by friends that morning. There was dinner waiting in the fridge and balloons in Patrick’s room.

Patrick was thrilled to be home. He immediately emptied his toy box. Everything looked exciting and wonderful to him. And to me. Though, I’ll admit, I was a bit frustrated to find that I couldn’t remember where I keep things in my kitchen.

It felt so good to lay down in my own bed and go to sleep.

That is one of the most often asked questions I’ve been getting. Did it feel good to sleep in your own bed? Well, yes.. it felt good to fall asleep there. But sleep didn’t come easy.

See – Patrick hadn’t fallen asleep alone in 3 and a half months. When I kissed him goodnight and walked out of the room, he started to scream. He got more and more panicked and angry. He said it was too dark. Patrick has NEVER been afraid of the dark. But I guess that is the byproduct of all of the trauma that he has been through recently. PTSD is VERY common in patients who have undergone a major medical ordeal like transplant.

I didn’t know what to do. I didn’t fit in Patrick’s bed. And I didn’t think he’s sleep with his lights on. So I said a silent prayer. And then I went in. I sat down next to him and told him I knew he was scared to sleep alone. I offered to help him say a prayer. He fell apart sobbing. It was heartbreaking.

I let him settle down and then told him I was going to walk away for just a minute and I’d leave a small lamp on for him. Then I’d come back. I still didn’t know what to do.

But when I went back, I got him up and held him on my lap. I read him a book. I told him we could leave the lamp on. I went out to my car and got the hot pack bear that he’d slept with in Nebraska on cold nights and warmed it up. Then I told the bear to take care of him and help him be brave. And I kissed him goodnight. And he snuggled down and was asleep within minute.

And I said a little prayer of gratitude for patience and wisdom.

And then I went and slept in my bed which felt great. But at 2:30, when I filled Patrick’s formula and changed his diaper, I somehow moved my back the wrong way.

After months of sleeping on too-soft mattresses, my back wasn’t so sure what to think of a nice normal firm mattress. And I couldn’t sleep in my bed anymore.

So no, I didn’t get a really great night’s sleep in my bed the first night. I ended up sleeping on the couch until 5, when Patrick woke up scared and I went and picked him up and we slept in the recliner in his room together instead.

Things have gotten better, though. Patrick still needs to sleep with “Louie bear” (named after Patrick’s ostomy.. long story) and with the light on. Sunday night, he only screamed and cried for about 15 minutes. Last night, he slept without tears. And tonight.. he sat up and played in bed just like he used to do.

And my back only hurt for a couple of nights and then got used to being in my bed again.

Sunday I went to church. It was VERY strange to be back. I knew I’d get lots of welcome from lots of friends and was a little hesitant about the attention. But I was happy to see them and it was ok. I told Brian I didn’t know where to go during the sunday school hour. I wasn’t sure I wanted the spotlight of going to the adult class.

He reminded me that Primary (children’s sunday school, where I am the music leader, but an assistant music leader has been leading each week)…still didn’t have anyone to play the piano. I voted for that. And I actually had a really great time. This is, after all, my favorite job in the church. And I didn’t have any of the responsibility.. Just the fun.

We had visitors for most of the afternoon.. my parents, my sister. Then, we went out to Brian’s parents. His mom had made us dinner. Ham and potatoes, special for Patrick. I remembered that I hadn’t heard anything about labs the next day and ended up making some phone calls to peacemeal something together.

Patrick’s nurse did come Monday morning. We slept in a bit and were barely ready on time. It took some time to update Patrick’s chart with all the new meds.

Because Monday was President’s Day, Brian didn’t have to work. We went out for breakfast.. I have missed Kneader’s french toast so much. It was yummy, though we established that their staff is either unwilling or incapable of making toast without butter for Patrick. Oh well.

Brian’s body was screaming that he needed a down day. So he took the job of supervising Patrick, who was still nostalgically exploring all of his toys. Meanwhile, I dove into Patrick’s room. We no longer need the drawers and drawers of IV supplies that we were using to give Patrick TPN. However, he does have a lot of new medications that we get 3 months of at a time. And he needs tube feeding supplies.

I worked all day, listening to Audible as I worked. And 3 boxes and a giant garbage bag later, I’d cleaned out the old supplies and moved in the new stuff.

That’s how the past few days have gone. Patrick and I try to get out part of the day to let him ride his bike or drive his car. The weather is like spring here right now… crazy coming from bitter cold Omaha… and so we only wear light sweaters outside.

But the rest of the day, I mostly clean. A friend came over and helped me clean out Patrick’s closet and his cupboard of craft and homeschool stuff in the kitchen. Today, I went through all of his toys and pulled out the old and broken stuff to make room for new. I filled both of our garbage cans. I have piles of boxes in the basement to donate. And I am maybe a little over halfway done with moving back in.

This is moving out of order. Usually, you clean out when you move out. You don’t move out, buy all that you want, then move back in and have to clean to make room for it.

Thankfully, being home means being surrounded by friends and family and help and meals just keep coming. I haven’t made an entree yet. And that has given me time to work.

I’ve also spent some time working on the business side of moving back home. There are claims to cover the cost of transportation to sort out. And there is getting homecare set up here. For some reason, that still isn’t done and I hope they figure it out before I run out of ethanol locks on Friday. (Thankfully, I received our month’s shipment of all the rest of our supplies right before we left Nebraska and that means no time crunch.) There are follow up appointments with doctors. Patrick’s GI, Dr. Jackson, has been great about being available to help us transition back. And figuring out how and when to go back to therapy. And e-mailing Patrick’s school so they can start working on all that it will require to get him back there when the time comes, which might involve hiring even.

It’s been a full week. But it is so, so good to be home. The stress is just what needs done and trying to keep Patrick entertained. Not the stress of being alone, but not alone.

I love the Ronald McDonald House. What would we have done without them? But there is nothing like being just here as our family and not needing to worry about anyone else. About knowing that we can pick up the phone and just call if we need something. About knowing where things are in the grocery store and what they should cost. And not getting lost trying to get to or from places.

I don’t want to let this blog drop and I’m sorry it’s taken me so long to get back to it. I don’t think well when I’m cluttered and all these boxes and suitcases have me feeling very cluttered.

But I know this journey is still just beginning.

Not only that, but I still have some things I’ve learned to tell you all about. Next time. Tonight, I’m gonna go snuggle up in my bed and go to sleep.

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Transplant Day 84 and norovirus

Let me preface this blog post with a warning. You are reading a blog about intestines. Intestines make poop. Also, when intestines get sick, all kinds of bad things happen. Patrick got sick today. And we have blog followers who have enough medical need-to-know that I will be writing about yucky poopy things. If you don’t want to read about yucky poopy things, then know that Patrick was admitted to the hospital today with norovirus, an intestinal virus, that has made him very sick and with his compromised immune system is dangerous. We don’t know what this means for him or how long we will be here, but he is feeling yucky and scared, but so far ok.

Now, disclaimer done. Here is how today went. Patrick went to bed happy last night. In fact, so happy that he laid in bed and tried to learn about rhyming words with me for an hour. He was still sleeping well at 2:30 when I refilled his formula. But at 5:30, when he woke up, he sounded pretty unhappy. This is a usual time for him to request me to come lay with him. So I went and laid down with him and he slept until 6:30 when he started doing all kind of things that he knows hurt me and wake me up.

I am a slow learner and forget that this behavior means that Patrick is trying to get attention because something is wrong. He was obviously was exhausted, as we all were, so I kept trying to get him to sleep and he would for a few minutes at a time before pulling my hair or pinching my fingers or banging his hand down on my face again.

At 7:15 I decided that we weren’t going to get enough sleep if I got him back to sleep, given it was lab day, so I got out of bed. Something about Patrick’s smell made me think he needed to be cleaned up. So I took him immediately to shower, much to his displeasure.

Well, he wouldn’t stand up straight. Just kept leaning on everything and was very whiny and then, as I took off his diaper, I noticed that he was acting queasy and that his belly looked kind of round. I poked. It was hard.

So I grabbed a diaper and I told him I thought he needed to poop. He did. And he went and he went and in seconds the diaper was full and his legs were wet and, given that Patrick’s stool has been solid or at least mushy for weeks, I knew something was wrong.

But now he really needed a shower. And a shower actually seemed to make him feel better. Brian and I talked and decided that maybe Patrick had eaten something he was allergic to the night before, as he’d been in the mood to try all kinds of new foods.

So we got him dressed and watching TV on his bed and we cleaned up the room and got dressed. And at 8:30 his nurse came and he seemed fine.. But then we made him sit up so she could listen to his heart. And he threw up all over both of us.

She managed to get labs drawn, but by the time she left, we could tell that Patrick was more than just a little bit sick. So, I called and left a message for the team and we stripped the bed and started some laundry and got permission to eat in our room.

Finally, around 10, the nurse coordinator called me back and asked me what our instinct was. I told her it seemed like a virus. But that I didn’t know what that meant we should do. She consulted with the nurse practitioner who calls the shots, and then called back to say that they wanted him to come in.

Checking in wasn’t easy. Even years after our zip code was changed, the computer system here seems to hate our new zip code.  It took over half an hour to get Patrick registered and meanwhile he had to go again, and made quite the puddle in both of our laps when his diaper leaked.. and he was trying his best not to throw up. And finally the woman at the desk called it good enough and brought us upstairs while Brian stayed to try to sort out the registration.

They did a full workup when we came in with cultures and viral panels and stool cultures. We just heard back that Patrick has norovirus. This is a pretty common and contagious stomach virus that, for many people, would cause an upset stomach for a day or two. It has a reputation for floating around the Ronald McDonald House.

For Patrick, on immune suppressants and with a brand new intestine, we don’t know what it will mean. For today, it means smelly liquid stool and nausea and a low-grade fever. He has spent the day laying in bed.. sleeping some. Whining a lot. Begging for water. And lying and saying that he is “all better” and “I feel great.” He’s on IV fluids and not allowed to eat or drink. Once he got an IV bolus of fluid, he started looking and feeling better. He is arguing over everything and saying “ow” or “stop that” over the slightest touches. (Not sure they hurt. He may just be defensive.) I think he’s finally past the initial anxiety of the hospital admission.

So the plan for now is to wait. There is no treatment for norovirus. Just need to make sure that he stays hydrated, that he absorbs his prograf properly, and that they watch for inflammation that might put his graft at risk. He’ll stay in the hospital, in isolation, until this virus passes.

The hospital is very full. We are in the last room, a tiny, outdated, smelly room with construction going on just the other side of the wall. This could be a long wait. But at least we have a room.

We are bummed that another daddy visit is being spent in the hospital.

I’m a little bit worried, knowing how contagious this bug is and just how many changes of clothes we’ve been through, that I am going to catch this and then I wonder just who will take care of Patrick if I can’t.

But only time will tell. We appreciate your ongoing prayers. We know that miracles are wrought by prayer. We have seen it over and over again in the past few months. So please keep those prayers coming.

Transplant Day 72 and Discharge Again

I just tucked Patrick into his bed at the Ronald McDonald House. Tonight, at least for part of the night, I will sleep in a bed by myself. The spot on my arm where Patrick likes to snuggle all night that is beginning to be deeply bruised is very grateful for this development.

It’s been a busy couple of days. Yesterday, I got up early and started begging often for them to find a volunteer to come sit with Patrick so I could fix the battery problem with my car. It took till afternoon, though, to find someone. So I was a nervous wreck all morning.

Finally, I explained to Patrick why I was acting frustrated and suggested maybe I should pray to calm down. Well, the next thing I knew, Patrick folded his arms, bowed his head, and said a little prayer that a “vodateer” (volunteer) would come so I could fix my battery. Not 10 minutes later, one walked in.

So then I made a mad rush to get it done. I called my insurance policy’s roadside assistance. (Thanks to my mom for pointing out that I might have that service on my policy.) They sent “Rescue Rangers” to come give me a jump start. Because I was in a parking garage, the guy showed up in just a regular sedan. (Tow trucks don’t fit in this garage.) And when he hopped out with a jump starter, I was pretty doubtful. But his was better than mine and the car started right away.

I drove to AutoZone and told them I thought my battery needed replacing. He grabbed his tester, but one look at the battery told him that it was gone. (I kind of knew that.) So he sold me a new one, then installed it, cleaned up all the corrosion, oiled my screws, and checked my other fluids. I expected the help putting in the battery, but not to that level.

With the car now happily starting despite frigid temperatures, I drove back to the Ronald McDonald House to get Patrick’s feeding pump so he’d be ready for discharge.

He had a pretty good night, as far as hospital nights go. And this morning, we slept in and laid around in bed being lazy. But eventually they came to clean his room and check his vitals and look him over.

Rounds were a little bit late. That actually helped a bit because it made the rest of the day seem to go faster. They confirmed our plan from yesterday that he could leave the hospital today.

A couple of hours later, they had a problem with Patrick’s feeding bag and I suggested that we just switch to his home pump. From that point forward, I couldn’t get him to stop running and running away. He was so happy to be free. (And feeling so much better.)

While they worked on getting orders, Patrick and I went for walks, ate soup, played in the playroom. It got late enough in the day that I called Patrick’s school teacher to tell him we wouldn’t make it back to the Ronald McDonald House and ask him to come to the hospital instead. And just as we were wrapping up with school, they came to say they were ready for discharge.

We left the hospital about 3:30 and stopped at Jimmy John’s so we’d have some food for dinner. (Patrick loves Jimmy John’s bread and with his new appetite, happily dipped and entire 2 foot long day old loaf in bread and sucked the broth out of it.)

Getting settled here again was more work than I wanted. It takes time to unpack, do laundry, put away a month of medical supplies, etc. But eventually, I got it all done and we wandered downstairs for a late dinner. Patrick is so happy to get to walk away from me a bit and to visit with his friends here. That felt really REALLY nice.

The new formula is easier to make, which I’m especially happy about. Doing meds again was much more second nature. And we even managed to change the dressing on Patrick’s incision with minimal fuss. I got him into bed by 10 and asleep before 10:30.

I’ll admit, it was kind of sad to come back here. When we were here last, we were still in that post-Christmas happy state. Brian was here. It was lonely coming back and knowing we need to put away Christmas is kind of hard. I’d leave it up, but really this room is tiny and with all the new toys, I need to get the Christmas decorations out of here.

Here are some pictures from this hospital stay. I wasn’t really great about uploading them so they cover a few days.

Transplant Day 26 and Atelectasis

Atelectasis: the collapse of part or (much less commonly) all of the lung.

Last night was one of the hardest we’ve had here. Patrick’s fever reached 104. And he was really struggling to breathe. Anytime he’d lay down, his oxygen saturation dropped. Anytime he sat up, he coughed violently. Finally, at 1 a.m. his nurse put him on oxygen and as long as we slept with the bed up and me helping to support him sitting up as he slept, he was able to rest.

At 5:45 a.m. radiology came to take a chest x-ray. It showed that Patrick’s pleural effusion had about doubled in size. It also showed that both lungs had “atelectasis.” In other words, his lungs were partially collapsed because of pressure.

When the team came around, they said that he needed them to help get the fluid out. If the fluid was from a pneumonia or infection, they could culture it and give the right antibiotics. If not, then they could from there start looking for other explanations for his fevers. The effusion itself can cause fever.

But he’d need sedation and that meant he’d need to have his feeds shut off for 6 hours. And that meant the earliest time would be evening.

Getting him up was rough, but once he was up, he seemed to do better. To help with the lung collapse, we played games that made him take deep breaths. We used birthday blowers to knock down towers of cups. We blew bubbles. We played with whistles. This kept him doing as good as possible, but as the day wore on, he needed more and more oxygen. I just tried to keep him happy sitting up, playing games, coloring.

His new homebound school teacher Mr. Chambers. came this afternoon. Patrick was dead tired and had figured out that sign language was easier than talking. So, this isn’t exactly how I figured Patrick’s first day of school in Omaha would look. But – it was the first step and that’s what matters. We’ll have an IEP written by the end of the week and dive in with 3 one-hour school sessions a week. Mr Chambers is very nice and very compassionate, too.

Also, Home Health came to deliver Patrick’s enteral feeding pump, get signatures, and give us any training we needed. We’ve used this pump before, but it’s been a long time and we weren’t using it all the time before.. So I figured a refresher course was in order. This pump is tiny and lightweight and Patrick will have no trouble at all moving and playing while wearing it in a backpack. It’s purpose is to do a drip feed of formula into his stomach all day long until he is able to eat enough calories on his own.

————

At this point in my blogging, from yesterday got interrupted. It is now Wednesday morning and I’m going to fill you in on the rest of what happened last night.

About 4 p.m. yesterday, we heard from Patrick’s nurse than Interventional Radiology’s schedule was full and they were putting Patrick onto his schedule for 10:30 a.m. today. Thank goodness for our awesome nurse Debb who was worried about Patrick’s continual decline. She made a lot of noise and I think is part of why things are better right now instead of just starting right now.

A little later in the afternoon, the nurse practitioner came to check in on Patrick before going home and tell us the plan to wait till morning. We said, “What if things keep getting worse overnight?” She answered that if there were an acute emergency, they’d take him down sooner. So Brian asked what constituted an acute emergency. The answer: Needing 2-3 liters of oxygen. So we pointed out that he was already on 2 liters of oxygen and desatting when he tried to sleep. She countered, “but at least he’s resting comfortably.” And I said, “No.. he’s so uncomfortable he’s been lying there trying to sleep and is resting because he’s exhausted from the effort.” She left the room rather quickly at that point. Half an hour she came back to say that they were working on setting up the procedure as soon as possible.

That was at 6 p.m. They took him down at 8 p.m. Because things were happening quickly, we got to give the same general history a few times to a few different residents. But eventually, the anesthesiologist came over to explain that, with his lungs already stressed, they thought it safest to intubate him for the procedure.

And then we kissed him goodbye and they said it was a quick procedure and we’d see him soon.

The procedure actually was pretty quick. With general anesthesia, an hour and a half is really fast… and that’s about how long it took for the doctor who performed the procedure to come tell us that things had gone well. They removed about 250 cc’s (or a quarter of a liter) of milky white fluid from the sac around his lung. That doesn’t sound like a ton, until you imagine Patrick’s tiny body carrying around 8 ounces of liquid in his lung. Then it sounds like a lot. They let us see the x-rays last night. His right lung had been entirely collapsed.

She said they’d call us back soon. But then we just waited. And waited. And we finished our show. And I started a blog. And then a chaplain came looking for someone to visit. And it before we knew it an hour had passed.

(A side story about the chaplain. After visiting for a while, she asked if she could pray with us. She said the prayer and closed “In Jesus’ name.” Then after saying “Amen” she blushed and said, “I didn’t think to ask if you were Mormon.” We said that yes, we are. Then she tried to apologize for praying in Jesus’ name. So we had a minute to stop and explain that we do, in fact believe in Christ and pray in His name and that her prayer perfectly fit our method of praying… And then that’s when the doctor came.)

Back to the story – the interventional radiologist came back to tell us that they weren’t having success taking out Patrick’s breathing tube. His lungs were too weak and needed extra time to recover before they’d work properly. He was making significant progress and she was sure he’d be ok before long. But, to be safe and give him time to recover,  she told us they’d keep him intubated till morning.

We were joined by a nurse manager who explained that in the hurry to get Patrick into the ICU, they’d put him into an adult room but that they were moving him to a pediatric room in under an hour and that they’d like us to wait till then to come back. We started to say, “OK. That gives us time to go clean up and move his things,” when we looked up to see one of the techs from the pediatric floor coming with a cart of things from Patrick’s room.

This kind of the last straw.. The idea that they couldn’t even wait for us to have time to get an update from his doctors before they were packing up and moving out his things. While we cleaned up, there was someone from housekeeping waiting because he’d been called to come clean the room and hospital policy requires that they respond within 5 minutes of the page. We don’t mind so much that they tried to help clean up and move the things… as the fact that he wasn’t even settled in the PICU before they had done it.

On our way out the door with the mountain of things that Patrick has accumulated during our stay, the nurse manager from the PICU came to find us to tell us that they had extubated Patrick. Ok, THIS was the straw that broke the camel’s back. Patrick was awake and we were downstairs cleaning his room and unable to go be by his side. She might have said something about “this is just how things go.” And we might have given her an earful about compassion. We are a little less angry this morning. But it’s going to be hard to bring ourselves to try to make Patrick’s next room feel homey again because it caused such a problem when he needed to move.

Anyway – with the fluid off of his lungs Patrick has been doing much better. He his heart rate is down, meaning his pain is going away. He is weaning off of oxygen. He is catching up on his very much needed sleep.  His fevers are gone. His lungs are a little bit crackly, but that will probably get better once he wakes up and starts moving and breathing again.

They are still waiting for lab results about the fluid that was drained. However, right now the working theory is that he had developed a chylothorax. “A chylothorax is a type of pleural effusion. It results from lymphatic fluid (chyle) accumulating in the pleural cavity due to either disruption or obstruction of the thoracic duct.”

I asked the team to teach me this morning what it means. What it means is this… Patrick’s transplant required cutting his lymphatic system. While it heals, it might become “leaky.” When they switched him to Elecare instead of Vivonex formula, they changed the type of fatty acid he was getting. And those fatty acids go through the lymphatic system and if the system is leaking, the fats can get trapped in places like the lungs.

Most transplant kids go through this. Patrick just got it worse than others because they switched his formula over so early.

They’ll go back to Vivonex formula. They will restart feeds slowly. They’ll watch closely to see if the problem comes back. And we’ll go from there.

It means more time in the hospital for him. But, hopefully before long they’ll get him back out of the PICU and onto the pediatric floor.

Transplant Day 14 and Daddy’s back

I think our biggest news of the day is that Brian got back from his short trip. Patrick and I were so glad to see him that I’m afraid we didn’t let him do anything else.. Just play with or cuddle Patrick. Patrick was so happy to see him.

Otherwise, just continued forward progress on the same milestones. Increased feeds. Walked a little farther with a little less support. Sat up a lot more with a lot less pain. Decreased pain medicines.

I shopped for home health companies today. I guess it’s kind of uncommon for the patient to call up and say “I want to make sure you can get me the following supplies.” Usually, setting up home healthcare is something the hospital just takes care of for you. But I wanted to be sure that we would have access to all the things that make Patrick’s life better. I think we found a good fit. Just one more tiny step towards our next goal.

Tonight was movie night in the hospital. The literally put out a red carpet. Then, they set up a conference room to look like a movie theater, complete with boxed candies, popcorn, pretzels and pop. Patrick has only been to a movie in a theater once. I wasn’t sure how this would go.. But thankfully the movie was Planes Fire & Rescue, which had that “I love cars” appeal. He did a lot better than I expected. Guess he’s 1)growing up and 2) not feeling great so screen time has a greater appeal.

I was talking with another family yesterday. We decided that adults could learn a lot from the way that kids do illness. I mean, imagine if you had to go to the hospital. Would you prefer to just sit in your drab hospital room reading? Or would you prefer to have a room all decorated in bright fun things, to have someone bring you your favorite hobbies every day, and to have a low-key party once a day? Wouldn’t you find getting better easier that way? Kids know what they’re doing. We grown-ups are the ones getting it wrong.

Another milestone: Patrick willingly went to sleep in his bed while I laid in the parent bed across the room. He is feeling more at home here.

2 weeks ago tonight our transplant team was looking at a transplant offer deciding if it was time to call and wake us up and tell us to come. Patrick is doing so well for just 2 weeks in.

 

 

Transplant Day 13 and a little fun

Well, we survived another day here without Daddy. (Brian was gone yesterday and today for work.) In fact, today was a little happier. Unlike yesterday were his steroids were making him feel out of control, today Patrick was just loving and fun. We got up early and gave him a bath right away which he didn’t want and cried a fair amount about. (In hindsight, the nurse had told me she’d given his medication later than I thought and I was starting him out kind of in pain.) But once he was settled in his wagon, all was good.

We mostly just hung out in the room again for the morning. A volunteer came and they played while I cleaned up. He asked for and took a nap all on his own. During his nap, I snuck out to call my insurance case manager. With Patrick progressing so well, the team wanted to make sure we start working on a plan for home health care just so that doesn’t end up being what keeps us here. I also had to take a little minute to finish up some school enrollment paperwork. And then, it was back to play.

We painted. We opened the mail and played with the gifts inside. We used some of Patrick’s birthday money to buy a learn-to-spell game that they had in the book fair downstairs and played with that for a while. As an extra treat, one of the Short Gut mom friends that I’ve known since the very beginning of our support group arrived here with her daughter and husband today and we got to spend some time in the playroom together. She coaxed Patrick into showing her how his walker works. (He’s been refusing to use it to walk.).. and he stood up and basically ran across the room. That was enough to sell him on it. I told him it makes him extra strong and extra fast and so he stands up in it and away he goes. I think that’s the beginning of a lot more freedom for him.

And then, to top it all off, an awesome group of volunteers came and put on a “carnival” for the kids today. They had carnival games and really hammed it up to make it fun. I don’t think I’ve seen Patrick laugh that hard or often since he got here. And they sent him back with a prize to boot. I was really very proud of Patrick because he listened and obeyed when we told him that he should wear a mask to the party.

Then, we came back, ate dinner and he asked to go to bed. Tonight, he even chose, after playing “you’re a little sweetie” for a while, (that’s a game where he hugs and kisses and gives ugga-muggas and then calls us sweeties for it), he even chose to let me get up out of bed and let him fall asleep alone.

Good news of the day: Patrick’s feeds were increased again today.. twice. He’s now at 8 times more than he ever tolerated before.  Also, we were able to space his pain medicine more than we have before. Tonight he told me he didn’t want it because it makes him feel yucky. I’m listening and we’ll see how he does tomorrow with tylenol mixed in to help us spread out the stronger drugs.

Also, I think I figured out how to work the ancient heaters in the room and this place no longer feels like a sauna. The colder it got outside (and it’s well below freezing at night), the hotter our room was getting.

 

Summer vacation

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.

Our first day of Mommy School. Learning the shapes of letters by building them from playdough.
Our first day of Mommy School. Learning the shapes of letters by building them from playdough.
A practical life mommy school lesson on how to sweep.
A practical life mommy school lesson on how to sweep.

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.

Teddy Bears
B is for Bears, and a teddy bear picnic.

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.

Patrick sees 3 therapists on a regular basis in the summer. It's hard work, but fun too. Patrick's reward for a good hour of work in physical therapy is the chance to climb the rock wall.
Patrick sees 3 therapists on a regular basis in the summer. It’s hard work, but fun too. Patrick’s reward for a good hour of work in physical therapy is the chance to climb the rock wall.
In occupational therapy, Patrick gets to take sensory breaks in the gym. Diving in the ball pool is a favorite exercise.
In occupational therapy, Patrick gets to take sensory breaks in the gym. Diving in the ball pool is a favorite exercise.

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.

I meant to pitch a tent outdoors, but it rained all that day, so we brought it inside. It worked so well we kept it a second day, too.
I meant to pitch a tent outdoors, but it rained all that day, so we brought it inside. It worked so well we kept it a second day, too.

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.

Patrick loved the children's garden best, especially hopping on stepping stones across the fish pond.
Patrick loved the children’s garden best, especially hopping on stepping stones across the fish pond.
The best part of our trip to the Natural History Museum was not the dinosaur bones. It was the chance to be there with other friends who know exactly what living with Short Gut is like.
The best part of our trip to the Natural History Museum was not the dinosaur bones. It was the chance to be there with other friends who know exactly what living with Short Gut is like.

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.

I was too busy to take pictures, but there were lots of cameras there. I snagged this one off my mom's Facebook page.
I was too busy to take pictures, but there were lots of cameras there. I snagged this one off my mom’s Facebook page.

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.

Builder Patrick

I didn't know they'd built on a pretend E.R. with the life flight display. Patrick found a little girl willing to play the patient and had a great time
I didn’t know they’d built on a pretend E.R. with the life flight display. Patrick found a little girl willing to play the patient and had a great time

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?

Mission Impossible

I probably have this idea in my head because we watched a Mission Impossible movie a couple of nights ago. But I swear that today, as I ran from one major problem to another and felt myself being powered by pure adrenaline, that my life is no less demanding than a Mission Impossible mission. Maybe a little more dull and much more sedentary.

Here’s why today had me thinking that. I stayed up till a little after 11 last night finishing off Patrick’s care notebooks, a 30 page medical history and emergency plan for Patrick’s school staff. I was woken 4 times during the night, twice by IV pumps alarming. Twice by Patrick’s mylar balloon drifting into the ceiling fan in the kitchen.

At 7:30, Patrick woke up and I tried really hard to explain that we had a busy morning and needed to get ready quickly. After a summer of lazy, he did his best but we were definitely out of practice.

We finally made it downstairs and I scrambled to put finishing touches on school supplies. That doesn’t mean pencils and papers for Patrick. It means putting together a medical supply emergency kits, diaper changing kits (with instructive labels on each bottle of cream), care notebooks, first aid response cards (miniature and laminated to fit in Patrick’s backpack), and allergy safe labels on boxes and bags of snacks.

Patrick’s school open house started at 9:30 and we got there a little after 10. I felt really bad for coming so late.

BUT we had a chance to meet some other parents and kids and explore the classroom a bit. As we were nearing the end of the open house, I had a chance to meet the speech therapist and special education teacher who’ll be working with Patrick this year. I kind of tried to make a mad scramble in my tired brain to remember the relevant information I wanted to discuss with them about his goals. I think we covered the main points and I was impressed that they seemed to be on the same page as me. Then I went over with the teacher and classroom aides a refresher course on his medical care and diaper care and what ADHD and sensory processing disorder mean for him. And, of course, how and who to reach in an emergency.

I left the classroom half an hour after the open house was due to end. We walked Patrick’s medical supplies down to the school nurses’ office, along with a copy of the emergency plan, and briefly went over their questions.

Then I pulled out my phone and noticed that I had missed phone calls. Lots and lots of phone calls.

On the drive to the school, I’d called Patrick’s dietitian to tell her that we can’t get blood to draw off of his new line right now and ask if she really needed any labwork done today. (A nurse visit popped up in the schedule yesterday.)

That call prompted her to call Patrick’s GI, Dr. Jackson, who’d spent the morning bringing himself up to speed on Patrick’s new line and being put on hold for transplant. And he was quite concerned.

Oh, and I’d missed the call back from the transplant nurse in Nebraska.

So, when I got in the car, I called back Dr. Jackson. He apparently spent the morning going over operative notes and talking to the radiologists and other surgeons. And he’d learned something about Patrick’s new line that was alarming.

We had misunderstood what we’d been told about the placement of the line. The azygus vein is not a central vein. That means, it doesn’t directly connect to the heart. The tip of the new line is in a dilated part of that vein. But, after the tip there are some collateral (spiderlike veins that grow around a clot to reroute bloodflow like the little streams that form around the sides of a river if it is partially blocked.) And it is those that are connecting to the main veins and to the heart.

And since those veins are small and could infiltrate just like a peripheral IV vein, (or swell and close off that access, too) Dr. Jackson wanted Patrick off of his TPN ASAP.

Because of Patrick’s low lipid protocol, there is a lot of sugar in his TPN. It’s a very high osmolarity formula that kind of rips up small veins. So tonight we got a shipment of a lower osmolarity, lower sugar formula to run until we get a resolution.

Dr. Jackson also contacted the nurses and doctors in Nebraska on our behalf.

Anyway, I spent the drive home talking to him, then brought Brian up to speed, grabbed a quick lunch then called back the Nebraska Medical Center. They asked me to fedex them a CD of all of the imaging done of Patrick’s vein in the recent past and e-mail them all the radiology reports I had.

By then, Patrick was pretty tired and pretty tired of me on the phone, so I tried to rock him to sleep for his nap. But the phone rang. A homecare nurse seeing if I needed my TPN pump reprogrammed. Then it rang again. The homecare pharmacist setting up a shipment of the new formula fluid.

By this point, I texted my sister. I could tell I was in over my head and needed more time than I had.

She drove over while I got Patrick down for a nap, then stayed with him while he slept. Meanwhile, I scanned all my radiology reports. Then I drove to the hospital to pick up the CD of radiology images that Dr. Jackson had requested on my behalf, stop in medical records for accompanying reports, and then down to the pharmacy for a prescription for ranitidine to replace the IV form Patrick usually gets in his TPN. Of course, on the drive up talking to the homecare pharmacy to order tubing and other supplies to go with the IV fluid. And, in the waiting room, e-mailing the nurse in Nebraska to decide that they wanted their own venogram done anyway and that they could schedule Patrick’s procedure without me sending a CD after all.

By now it was 3 p.m. and I was feeling a bit like my mind was doing stunts Tom Cruise could only dream of. I was exhausted with trying to change gears and think of entirely new life-critical details. Fortunately, 3 p.m. is 4 p.m. in Nebraska and close of business for the intestinal transplant office.

So, when I got home, I just had to make dinner and clean up a little bit until evening.

Dr. Jackson called this evening and we had a good conversation about where Patrick is and where things are going. The best phrase of the conversation was when he told me that he thought that the doctors in Nebraska are just smart and daring enough to be able to “Macgyver something” to keep Patrick listed if possible.

But we also had a good talk about where else central lines can go and how to reduce and treat clotting in veins and genetic predispositions and a whole bunch of other crazy things, kind of like Dr. Jackson and I like to do. Is it strange that he and I kind of enjoy talking over medical problems together?

The encouraging thing to me is that, although he called our situation “sobering”, I could hear in his voice that he has a lot of hope still.

And that he’s pushing to get things done, and quickly. I think he said he’d e-mailed the surgeon twice and had sent a copy of all of the radiology reports that he was able to send by e-mail to his nurse.

This evening, we received the delivery of new fluid and got it started. (The sad thing about this change is that, with fewer calories, Patrick can’t afford a tubes-free time every day. The good thing is, the bags are split into two per day so they weigh less and he’ll be able to wear his pack.).. After connecting his fluids for the night, we picked out clothes for school, put on PJ’s, and tucked Patrick into bed.

I’m hoping for a little more calm tomorrow. I’m happy Patrick doesn’t miss the first day back at preschool. And that, amazingly, we pulled that all together in the midst of all of the rest of this madness.

And maybe I can get phone calls done while he’s at school. Maybe even a plan for how to get out to Omaha. Maybe.

Or maybe, if they’re not ready for me yet, I’ll just go sit on the lawn at the park next door and read a book and delight in the knowledge that at 10:15 every Monday-Thursday, Patrick gets to go visit the sensory room. And all his favorite aides from his old class get to come into his new class for morning circle time. And some of his familiar friends are still there.

I think I had enough adrenaline for one day today. Heck, I’ve had enough this month to get me by for a year.