Tag Archives: special needs parenting

Transplant day 125 and something is brewing

I’ve been saying for days that I needed to blog. But it’s been a doozy of a start to a week. I’ll take my pictures from last week, which was much funner, and tell those stories in the captions.

A week ago Wednesday, we snuck away to a hockey game. We gave up our usual center ice seats and instead snuck into the upper level where tickets aren't sold. This means we had the section mostly to ourselves.. much safer.

A week ago Wednesday, we snuck away to a hockey game. We gave up our usual center ice seats and instead snuck into the upper level where tickets aren’t sold. This means we had the section mostly to ourselves.. much safer.

Sunday, Brian made a comment to me as I got home from church about how many diapers he had changed for Patrick while I was gone. I thought, “Oh, we’ve had a lot of that lately” and didn’t really listen. It was a busy day. I’d been at church for 3 hours and we had decided to stay home that day and invite some friends over for dinner last minute. So while Brian was turning out a roast and roasted potatoes, I was throwing some bread in the breadmaker and trying to get Patrick to nap. And, well, I didn’t think of it again.

Until the next morning when Patrick’s nurse checked his temperature while I ran upstairs to grab some supplies to draw labs. I came downstairs to him telling me, “He doesn’t have a fever, but his temperature is a bit high. You might keep an eye on that.”

But Patrick wasn’t complaining. He just needed a lot of diapers changed. And we’d just changed his formula to be a little more concentrated so it would run over less time and I thought that was all that was up.

When it was naptime, though, I checked Patrick’s temperature. To do this, we always check ours first to be sure the timpanic (ear) thermometer is working. And, well, Patrick’s temperature was still 99.6. But mine was 100.4.

All through naptime, Patrick’s and my bellies gurgled and talked to each other. By evening, I was feeling pretty darn sick. Apparently stomach bugs know how to get past our germophobic defenses.

 

 

Knowing Patrick had been feeling a bit stir crazy, and also knowing it wasn’t wise to go out, I’d embraced Dr. Seuss’s birthday wholeheartedly with books and themed activities for mommy school. I’d promised Patrick a dinner of green eggs (jello eggs) and ham. So, sick or not, I threw on a pair of gloves and still got dinner on the table and prayed that was enough to protect anyone who needed it.

The night was rough, but at least I was already up to be able to watch to be sure Patrick was ok. By morning, I was a bit better, though exhausted. Patrick’s temperature was down. His Monday labs had shown elevated liver enzymes.. an early sign of illness.. and there were some small hints of dehydration. I saw this online on Monday, but because Patrick’s prograf levels were late posting, I didn’t get to talk to his doctor until the middle of the day Tuesday. We decided that if he wasn’t seeming sick, that we’d wait and check labs again on Thursday.

At 11:45 a.m. an alarm went off reminding me that Patrick’s new feeding therapist was due to come. Oops. I probably should have cancelled. But knowing that I was taking super precautions to protect Patrick and that stomach bugs aren’t airborne, we opted to go ahead.

Patrick grabbed my camera and took pictures of his room for me during the week. He is in love with his license plate collection. Cars+letters. What's not to love? Especially since they are sent to us from friends all over. His nurse brought him the logo off of a car, though and now he thinks he should collect those, too.

Patrick grabbed my camera and took pictures of his room for me during the week. He is in love with his license plate collection. Cars+letters. What’s not to love? Especially since they are sent to us from friends all over. His nurse brought him the logo off of a car, though and now he thinks he should collect those, too.

Amazingly, Patrick was a rockstar for feeding therapy. He ate, including swallowing, a few slices of lunch ham. And half of a soynut butter sandwich. Then he asked for hummus and carrots.. practiced biting and chewing the raw carrots (though still not ready to swallow those.)

Sure, it made his belly pretty unhappy. But Patrick only knows unhappy bellies and so he didn’t mind. And after she left, when I made myself a bowl of Progresso beef stew, he decided he wanted to join me in eating that, too.

Note the pouch in Patrick's mouth. We went shopping that morning and Patrick spotted these pouch baby foods. We had talked about trying purees with his feeding therapist. Patrick had seen his friends with applesauce and decided he wanted these. He had a "smoothie' in his hand for 2 days straight. Then I gave him peas. Now he won't touch them.

Note the pouch in Patrick’s mouth. We went shopping that morning and Patrick spotted these pouch baby foods. We had talked about trying purees with his feeding therapist. Patrick had seen his friends with applesauce and decided he wanted these. He had a “smoothie’ in his hand for 2 days straight. Then I gave him peas. Now he won’t touch them.

Yesterday, I finally was feeling better. Patrick got up in the morning just bouncing off the walls, though. He asked me if we could “do move our bodies,” our Mommy school code for getting gross motor exercise in every day. And then he asked if it was exercise class day at the library.

It was.

And knowing that he really, really needed to get out, we chanced it and went to Mommy and Me exercise time at the library. The teacher there has seen us through 2 summers. I made sure we arrived early so I could explain what he’d been through and she was super careful with him. He did pretty darn well, actually. Better participating than I’ve ever seen from him there. But about 15 minutes in, he was too tired to go on.

That was ok. We went and picked books. I let him get his first library card. And we went home.

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It snowed Tuesday. Patrick was so excited to play in it. Only his 2nd chance this winter. So on Tuesday, sick as we were, we went out and shovelled walks. Wednesday, he was thrilled the snow wasn’t gone. He declared we were making a snowman. And a snow elephant. And a snow gorilla. He went to sleep talking about it.

And I woke him while it was still warm. The snow was all crunchy from melting and refreezing and not at all right for snowman making. This got me off the hook for the other creations. But we did manage a little snowman. And because I had carrots to give it a nose, Patrick was more than happy.

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Today we both were finally feeling better. Patrick got up a little too early, but it meant we were ready for labs. I was going to blog first thing, but the internet was down. So we dived into mommy school instead. The theme of the week has been fairy tales and today we learned about The Gingerbread Man. Patrick is a little miffed that the main character of the story got eaten. He has a lot to learn about fairy tales. It was a good theme, though. I was able to squeeze a little more math in that usual.

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Patrick is really, really mad at the idea of addition. He doesn’t like the extra symbols. He HATES the word “equals” (or as he says it, “eekso”). But today, by using teddy grahams that he was allowed to eat as we did the math, he played along a little bit better. Plus, I said “1 plus 2 makes” instead of “equals” and that helped.

I’m trying to be patient waiting to get Patrick a teacher. Not that I can guarantee that it will even make a difference for him. I just worry that I am not making ground on helping him catch up after all he missed this year. I really wish sometimes I could send him back to class. I admire moms who homeschool and are able to make that work in a consistent routine. Today was a good day. Patrick gave me an hour and a half before he got restless and asked to outside and I declared “recess” and let him go play in the remnants of snow.

I was hoping better looking diapers would have meant also better looking labs. But Patrick’s labwork this afternoon still showed elevated liver enzymes, dehydration creeping upwards, and an elevated white count. I called Patrick’s transplant team and asked if we should change his formula recipe and they opted to add back in some extra fluid for the weekend. I am sad he needs it, but at least I won’t be as worried about dehydration. Patrick’s been doing great drinking water and powerade and eating popsicles, but I was still worried.

Meanwhile, as long as Patrick is still looking and feeling happy, we will just keep an eye out. They might do some blood tests for a few viruses on Monday. But hopefully, things will get back to normal.

Tonight was one of those nights where things just felt comfortable and happy at home. Our bird, Max, was in a really cheerful mood.. simply playing. Patrick snuggled up in my lap to play tonight. Max climbed up, too and let Patrick pet him. (This is a HUGE compliment from Max, who is fairly bitey.) Brian was in his chair playing with a new geek gadget. And everything was right with the world for a little bit.

People have asked if we have a new normal yet. Some days I feel like we have found a rhythm. But so far, nothing sticks for more than a couple of days. We are still figuring it out. And as long as there are looming follow-up appointments and the hope of Patrick starting school just around the corner and little medical enigmas lurking… Well, it’s hard to imagine we’ll be settled for a while yet.

Before this mad, crazy week.. my mom and dad took Patrick for the evening so Brian and I could go on a date. After all we've been through, it was nice to just be laid back. We went bowling, had ice cream for dinner, then went to Home Depot and bought a mailbox.

Before this mad, crazy week.. my mom and dad took Patrick for the evening so Brian and I could go on a date. After all we’ve been through, it was nice to just be laid back. We went bowling, had ice cream for dinner, then went to Home Depot and bought a mailbox.

Transplant Day 114 and settling in

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Patrick and Max rediscovered each other this week. Starting with this moment. Patrick got Max up in the morning and tried whistling for him. Max got it and started singing back.

Whew. It’s been a week that we’ve been home. In some ways, it seems like this week has gone very slowly. In others, it has flown by.

Settling in at home has been a lot of work. For one thing, our vanload of possessions from Nebraska didn’t fit into our new home. I will admit that I had more than one panic attack over the pile of boxes sitting in my living room waiting for me to clean out and make room for their contents. It seemed that no matter how hard I worked, there were always still so many boxes. We finally got the last of them emptied and put away last night. Too bad it took filling another pile of boxes with things to be sorted through and donated or thrown away. At least that pile is in the basement at the moment.

But unpacking, though it took the bulk of my physical effort, was only part of the job this week. I spent a good portion of Tuesday morning sending e-mails and making phone calls. We get some reimbursement for Patrick’s travel home.. just some, but some is better than none and needs to be claimed.

And then there was homecare. It should have been easy to get homecare orders here. But our homecare company wouldn’t accept out of state orders. They had to be rewritten by Patrick’s doctor here. However, those orders got lost somewhere along the way. (And, research turns up, would have been incomplete anyway.) So Thursday morning was devoted to scanning my discharge orders and prescription medication lists, etc. and making phone calls to make sure that medical records actually arrived. Friday, a week after we left Nebraska and our last day of supplies, we finally got a delivery.

Labs with homecare nursing went a bit smoother, but I’m still not convinced that a copy of the results is being routinely faxed to the team in Nebraska.

Other projects included e-mailing Patrick’s school to start working on getting him an education plan, grocery shopping so we weren’t entirely dependent on others to bring us meals, talking to insurance to make sure preauthorizations were all set up, and getting a referral to feeding therapy.

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These two are now inseparable. Now that we don’t have to worry about Max biting TPN tubes, and Patrick is learning not to lock Max in random rooms around the house. Max only has to be caged when he gets bitey.

On Thursday afternoon, the weather was beautiful and Patrick was pretty burned out on watching mom unpack boxes and talk on the phone. So after I made it through the morning business, we decided to take a picnic lunch to the park.

Patrick chose some of his foods. Veggie straws and crackers. I picked more nutritious things, too.. Chips and guacamole, chicken nuggets, and an assortment of dipping sauces to experiment with.

Then, I let Patrick pick a park. He asked for the one next door to his school. We didn’t think about that it was by the school until we were there. Then he wanted to go visit his friends at school. School was just letting out and it was kind of hard to have to say no. Thank goodness one little boy came over to play. He wasn’t a best friend, but he was a familiar friend and then helped ease the pain a little.

So did lunch. Patrick ate and ate and ate. He discovered he likes veggie straws in ketchup, but wasn’t a bit fan of the chicken nuggets. That’s ok. As long as he tastes the new foods, I’m happy right now.

Friday we had our first post-transplant appointment with Patrick’s GI, Dr. Jackson. Have I mentioned how much we love that man? He scheduled us in on a day that his clinic was closed. He spent and hour and half making sure that he learned all he needed to from us and that we had time to ask all of our questions. Patrick is in such good hands.

We talked about making a plan for when Patrick gets sick to allow him to bypass the emergency room as long as his ABC’s (airway, breathing, circulation) are intact. We went over Patrick’s medications and new anatomy and diet. We asked about sending him back to school, and found Dr. Jackson to err on the side of caution where our hearts are more than the team in Nebraska does. (We really want to wait out cold and flu season.) He let Patrick be the doctor and check his heartbeat and eyes and ears as well.

The general gist of things is that Patrick is doing well and Dr. Jackson is committed to helping him continue to do so. And it was nice to be back with a doctor who loves teaching. I now understand why and how some lab results are followed.

One of the very rare moments when Brian got to join us for naptime and Patrick let me out of the bed. Usually, I lay with Patrick and read scriptures through his naps.

One of the very rare moments when Brian got to join us for naptime and Patrick let me out of the bed. Usually, I lay with Patrick and read scriptures through his naps.

And so, here we are. Tomorrow’s plan is to get labs, to change a central line dressing, to try to clean up the pile of boxes in the basement, to make a meal plan, to do some mommy school with Patrick, and to cook dinner (still a novelty for me.)

Oh, and to spend a LOT of time barefoot. I’ve had enough of having to wear shoes and socks to last me a good long time. If it weren’t for labs, I’d maybe even try spending the morning in pajamas.

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One more thought. A lot of people are asking rules for visiting Patrick. I really appreciate the caution about keeping him healthy. Here is what I’ve posted on the front door.

Our son recently received a transplant. Please help us protect his gift of life by keeping germs away.

Please advise us if you have recently had or been exposed to a contagious illness. This might include:

  • Fever
  • Runny Nose
  • Cough
  • Sore throat
  • Vomiting
  • Diarrhea
  • Rash
  • Pink eye
  • Nausea or dizziness

You may be asked to wash your hands, wear a mask and/or gloves, or reschedule your visit for another day.

Please do not visit if you have an illness or infection treated with antibiotics in the last 48 hours, or if you have been immunized with a live vaccine (Measles a.k.a. MMR, Smallpox, or FluMist) in the past two weeks.  Thank you for being immunized.

In other words..if you are actively sick or think your odds of getting sick are getting high, you might postpone your visit. If you’ve been sick and are feeling better, then ask. Good handwashing is probably good protection the majority of the time.

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 102 and Snow boots

I was almost going to put off writing one more day. Then I thought, “Well maybe I’ll send a short update out just so people know we are ok.” Then I pulled up the blog and realized I haven’t written in almost a week. So I’m going to try my best to post a quick blog. I am very VERY sleepy so this may not be my best.

Things are good here. Patrick’s belly finally has been seeming settled. On Sunday I turned up Patrick’s feed rate without it making him sick overnight.. a first since he got sick and a sign that he might finally have beaten the virus. However, the diaper I changed just as I put Patrick back to bed has me questioning my confidence in that notion and we’ll see what the night brings.

We’ve been working on finding our rhythm again this week. I mixed up the routine a bit this discharge. I realized that it wasn’t worth the struggle of trying to do so many things outside of the room. It just means more exposure for Patrick. And more time spent tracking him down when he wanders or telling him to stay out of things and more bad feelings between us.

He was so happy to be back at the Ronald McDonald House. So happy to be able to play without rules with his choice of toys. The first couple of days he didn’t want to leave the room. So I started making formula here in the room instead of in the kitchen. And I started drawing up his morning meds at night and putting them in the cooler I keep in the room so I don’t have to go get them in the morning. And we don’t go out as much. And we are both cool with that.

Patrick trying on my new hat and scarf.

Patrick trying on my new hat and scarf.

But we have had some fun, regardless. Friday, Child Life at the hospital arranged for a mini carnival and haircuts to be held at the same time. So we went over and got Patrick and myself much needed haircuts. And while it was my turn, Patrick got to go into the room next door and play. Then, he got to pick carnival prizes. Only he didn’t just pick for himself. He got gifts for Brian and me, too. He picked me out a bottle of lotion which, really, is the first time I think I’ve ever had him pick a gift for me and struck me as very thoughtful. He picked hoop earrings for Brian, but then noticed a Rubix cube and changed his mind. For himself, a book light that we use every night to read his picture scripture stories.

Saturday, we got together with a friend that Patrick made here at the hospital. They are staying in the Leid, a hotel attached to the hospital. His grandma and I have been watching for a chance to get them together. So on Saturday, I invited them to come play in the snow. We had a foot of snow, but it was 45 degrees and starting to melt.

So, in the morning, Patrick and I ran out to Shopko and bought some snowboots and waterproof gloves on clearance. We also picked up some snow dye bottles. And then we had a McDonalds happy meal together. (The little boy is here doing the intensive feeding therapy program so we thought that eating together might be good peer support for both boys.) Then we went out and played in the snow for several hours. We built a snowman. Patrick’s friend then said we needed a snow elephant, so we built that, too. I dug a box out of the recycling bin and we helped the boys sled on a little hill and they laughed and laughed. We made snow angels. We threw snow at each other, but not snowballs because our perfect packing snow made killer snowballs. A family in the house from Tennessee kind of timidly came out to play, too. I think the moms had as much fun as the kids.

And then, by the end of the day the color had all run off our snowman because of the heat and by the end of the next day, he was just a little pile of snow.

Another treat is that Patrick can take baths again. Since transplant, baths have been very limited and often forbidden. With an ostomy, they were possible but had to be short. After takedown, he had an open incision for almost a month. In the hospital, I only do sponge baths. So to be able to put him in the tub and let him play is a treat for both of us. He’s had a few 1 hour baths. One morning, I just put all the towels in the room on the floor to catch the spills and splashed and let him go.

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So much has changed for Patrick. It will be a lot to get used to when he comes back. He is eating like crazy these days. I’ve started to let him have snacks to just graze on. I put the in the disposable coffee cups that the house provides. So he munches on cheerios while we drive. I have cheerios in my seats. Who knew I’d be happy for that little milestone one day?

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On Sunday evening, I packed him a cup of veggie straws and we went for a drive. He finished his cup after 10 minutes and asked to go back home for more. I didn’t oblige. Instead, we went to drive across the “Mormon Bridge” just cuz we’d heard about it. Then, as I was driving back, I noticed signs for the “Lewis and Clark Monument” outside of Council Bluffs, Iowa. So, we went over there. Arrived just as the sun was setting, reflecting in the Missouri River. Being in a state park, on a hill overlooking the city.. felt a bit like home. Patrick was just happy to wear his snowboots and stomp in snow and mud.

Patrick also snacked on Cheerios all through our Primary lesson this week. We were looking for a room to do this in and found the Sunday house staff member resting on the couch in the room we usually use because her back was out. Patrick just snuggled up next to her and watched her show and ate Cheerios. Then, when her show ended, I told him it was time to do his lesson. So he asked her to join us. She obliged and it was very sweet, and kind of nice to get to have someone else listening as we talked about Jesus and his resurrection and atonement. She even sang along with us. Patrick tried to make her say the prayer, but I persuaded him to teach her about how we pray and let her listen just this one time.

Anyway – I was saying… so much has changed for Patrick. He is growing up in so many ways.

He eats. Kind of all the time. It’s still new and most of what he eats is like what you’d feed a toddler still learning to eat. But he has discovered a love for ham and cheese sandwiches. He chews up and swallows the bread and cheese, but spits out the ham. The first time he did this, I was stunned. When a few days later I offered another sandwich, he said “Mmm. Yum!!” I think he just needs time to go through the developmental stages of eating. I haven’t taken him back to feeding therapy yet because I wanted to give him a week to get better and see what the doctors said in clinic this week. But we are moving the right direction.

He has realized that dirty diapers don’t feel good. Now, he knew this before, but his stool was very different before. It was all liquid and either had to be changed right away or absorbed completely into the diaper. This is different. So we get up and change him during the night if he goes. And he’s learned to go back to sleep after. (A HUGE step for him.) And when we someday can keep a routine long enough, I think we’ll be ready to start exploring potty training again because I think he finally has some control over that.

Meanwhile, this means I am very sleepy. It’s kind of like I have a newborn again. Formula has to be refilled every 4 hours because Patrick’s bags only hold that much. A bigger bag could be put on ice and not need this attention, but then Patrick would have to wear a bigger backpack. He has one, but he prefers the little backpack that doesn’t get in his way when he sits down. Between changing diapers and refilling formula, I am up every 3-4 hours during the night. This is why I don’t blog. I am so sleepy I crash when Patrick crashes. And since naps can mean insomnia, we don’t always make that up during the day.

Taking the snowy way because he has snow boots

Taking the snowy way because he has snow boots

He still chews on everything, but he’s given up paci’s. Ok, I’ll be honest. He tried to cave on that today. He found his pacifiers and asked for them back today. But I reminded him he had chosen to be a big boy and didn’t need them anymore. Then I grabbed the sewing kit and cut the paci’s out of his wubbanubs and sewed their mouths back closed. He was sad. He said he wasn’t a big boy. He was a girl. So he could have paci’s. So I grabbed a chewy tube and sewed it onto the hand of his monkey and told him that he was a big boy and his monkey could help him have chewies instead. This kind of worked and he is happily sleeping with his friends again tonight.

Patrick has also made tremendous leaps in language. His first/second person confusion is pretty well gone. And he talking more and about more grown up things. The other day, we had a really off day. We tried to nap and it failed and Patrick had a chip on his shoulder all day, and after fighting about nap, I did, too. Nothing clicked. He kept pushing boundaries. I kept falling for it and snapping at him. Finally, we got to the room in the evening and I sat down and just cried and told him I didn’t like fighting with him anymore.  He gave me a big hug. He told me, “I’m a tech.” This is the title of the medical assistants who check vitals at the hospital. I don’t know why this exemplified the most compassionate person he could be at that moment, but I understood that was exactly what he was offering. Then, he got up and got my Kindle and brought it to me and said. “Mom. Look at your Kindle. It calm you.” And you know what, he was right? We sat on the bed and I read my kindle and he played with his tablet and we were calm.

He is still in love with reading. I wish we were making faster gains. It’s really hard when school is only 1 hour a day, 3 days a week and we rarely make it a week without missing at least one day. But I’m trying. On Monday, I pulled out Patrick’s stack of sight word readers and my laptop and I told him that for every book he’d read to me, I’d let him play one game on SesameStreet.org. This strategy actually worked really well. Not only did we practice reading, but we played some educational games. Then, when he wanted more mommy school, I pulled out a little game we have with letters on dice and we built words to and then changed their first letters to find rhyming words. It was one of my better mommy school sessions.

Patrick often pulls out this bike and rides while I do the laundry

Patrick often pulls out this bike and rides while I do the laundry

 

And today, we just stayed in the room and cleaned out Patrick’s toys. It helped him remember what he had here so he wanted to play here more. It helped me organize some of what was overflowing. And it gave us a step in the right direction for daddy to come back tomorrow.

Brian has had a doozy of a trip home. He had meetings with a group from out of town last week and a couple of days in, one of them came down with a cold. Well, Brian caught it. And it took him down. He had to take a couple of sick days. When he was still running fevers after a few days, he actually ended up at the doctor where he was diagnosed with bronchitis and given antibiotics and a cough suppressant. But that didn’t mean rest for him. We decided that a last step to really cleaning up the house was replacing the carpet in our bedroom. So, still sick, he moved all of the furniture out of our room so that could be done Monday morning. Then, also Monday morning, discovered that he had a nail in his tire. Had to put on a tire and take it to be repaired.

He is a lot better, but his cough is still lingering so I get to try to reach Patrick’s team tomorrow to figure out if that means that Daddy shouldn’t be around. And then we have to figure out if that means postponing his trip or finding him somewhere else to sleep or wearing a mask all the time or what. This is another new thing for us. Navigating a contagious world with an immune suppressed family member.

It has led me to research into contagious period for certain illnesses. Someday, I’ll summarize that into a handy guide of “how long to stay away if you have been or might be getting sick.” For tonight, this was a handy little document. http://www.bccdc.ca/NR/rdonlyres/8061A728-C969-4F38-9082-B0296EF2A128/0/Epid_GF_childhood_quickguide_may_09.pdf Especially given that Utah is experiencing outbreaks of a few vaccine preventable diseases right now. I’m biting my tongue and trying not to blog about how scared I am coming back to this absolutely ridiculous problem. It’ll probably come out one of these days when I have time, though.

Anyway – I think I’m about out of stories worth telling. Well, maybe just one more. First of all, we survived a very long weekend of no dinner groups at the Ronald McDonald House. I miss the friendly group of families that was here over Christmas. The current group has a more every-family-for-himself attitude that I think has grown out of the panic of cold and flu season. Regardless, knowing that norovirus can be spread in food, I decided we’d better just cook for ourselves. I started to brainstorm dinner with Patrick the other night and he said, “I have a great idea! Let’s have chicken! Like at the hospital.” Well, I’d had KFC one night and apparently he liked it. But KFC was out of chicken and literally locked their doors that night. Odd. So we ended up getting a rotisserie chicken instead and I think we did pretty darn well with instant mashed potatoes and gravy made out of Patrick’s chicken broth. Patrick ate a ton and we were both happy.

Patrick and the Omaha Lancers Hockey Team

Patrick and the Omaha Lancers Hockey Team

But tonight, dinner groups are back. And we started out with a great one. The Omaha Lancers, a junior league hockey team. Not knowing they were coming, Patrick decided to wear his Avs (hockey) sweater today. So he gave us away early as hockey fans. And I’m sure he made and impression and won them over. He traced the player numbers on every team member’s jersey.. then spelled out the letters of their names. They made him pancakes and ham and toast, all current favorites, which of course won him over, too.

Ok. I am out of stories and really should get some sleep.

 

 

Transplant Day 94 and still here

For all that the doctors and I always try to say that we can’t rush dates because you can’t predict what Patrick’s body will do, I sometimes accidentally get myself set on a goal and then am discouraged when we don’t meet that goal.

When Brian left, Patrick was flying through recovery. We pushed them to go up on feeds quickly because his belly was handling them. He was eating well. And we said, “I know you sat that he might needs weeks to get over this because he doesn’t have an immune system. But he feels great. And he’s a miracle. And he’ll shake this quick.”

He did not shake this quick. On Friday night, Patrick’s feeds had reached 70 and he was doing great. Two more increases.. one every 8 hours, and then a day of observation and he could be discharged. They turned up the feed rate at midnight, as the clock kicked over to midnight. At 1:30 I woke up to the sound of Patrick’s tummy churning angrily. And then the diarrhea started. And two diapers later, I called the nurse and said we needed to turn the rate back down.

I was already fried on Friday. I’d planned to ask for a volunteer and go back to the house for some laundry. But Patrick fell asleep at 1:00… and he slept till 5. He’d be woken, ask me to come lie down with him again, and then he’d crash again. I’m pretty sure his prograf level had gotten low enough from being sick that the side effect of insomnia had temporarily worn off. And I didn’t have the heart to wake him. But that meant that when he woke, I had missed the chance to get help to go do laundry. Instead, I tried going and getting change and using the one washing machine I know of on hospital property, in the hotel wing called the lied. I finally got someone to break my $5 bill.. but several trips to the washing machine later, I hadn’t been able to start laundry.

That night, I’d begged Patrick’s nurse to sit with him a little extra after giving meds so I could run back to the house and get clothes. I was literally out of clean ones. And that worked…

But then, here we were… awake during the night with a tummy ache and too many diapers and my pajamas got dirty and I had to try to do laundry again.

Patrick’s belly woke him at 6:30 a.m. so I decided to embrace it. I threw on clothes and hauled my laundry back to the other building and started a load of wash. I stopped in the cafeteria because I was still two quarters short of the change I needed to dry my clothes. Then I came back, hopped in the shower. When I got out, Patrick was out of his bed telling me he needed cleaned up. Oh boy did he. So, hair uncombed and socks off, I put together a sponge bath.

When I finally got that done, I was late moving the laundry to the dryer. So I hurried back, moved laundry.. came back and finished cleaning up the room, talked with Patrick’s morning nurse. Then, I went to pick up my laundry and got back to discover that I had missed rounds.

This was kind of the last straw. I knew when I’d asked for feeds to be turned back down that I was choosing at least one more day till discharge.. But to not even discuss the problem and plans with the team because I had been struggling to take care of myself was frustrating.

I broke down in tears. I sometimes really miss the amenities of a children’s hospital designed for parents to sleep over. I also really miss having people around me that I know well enough to say something like “will you do my laundry?”

Anyway – the result was that the nurse decided to give me a break. She said to take 2 hours and do whatever. Knowing we were committed to the weekend in the hospital, I went to the craft store to get more ways for Patrick to pass the time. You know when you’re trying to plan to keep kids entertained for a road trip? Or trying to keep kids entertained when they are home sick from school? Imagine that magnified by a 2 week hospital stay… every other week.. for 3 months. Patrick has toys. But he is so stir crazy that getting him play with them is a struggle. Crafts are a better bet because they are continually new. And so I’ve built in a craft budget.

I felt better after some time to myself. I even picked up french fries and McDonalds and we had a nice lunch. That evening, a friend from church came and sat with him for one more hour, giving me a chance to go back to the house and clean up some of the messes we left behind there.

And then Saturday night, one of the nicer, bigger rooms became available and Patrick’s nurse came and asked if we wanted to move.

This has made such a huge difference! Honestly, I hadn’t realized how cramped we have felt. Not just in the hospital room… I knew we felt crowded there.. But also at the Ronald McDonald House.

I’ve been asked to describe the living accommodations there. Basically, we have a room that’s a lot like a hotel room. We have two twin beds and a double bed, some big dressers, a closet that is stacked floor to ceiling with medical supplies and luggage. We also have 6 totes along one wall filled with toys for Patrick, mommy school supplies, and other odds and ends. It is a nice room, but cramped when 3 people are in it.

The rest of the house is pretty spacious. They have a triple kitchen that we share. (Triple meaning 3 sinks, stoves, and dishwashers.) Everyone is allotted a shelf in a fridge and a small locker style cabinet to store food in. Because of Patrick’s allergies and not being able to eat food brought in by dinner groups, we actually have two. There is also a wall of bar-sized fridges to keep medical supplies in in this pantry area. The kitchen is very nice with just about any kind of appliance you can imagine, though the pans and knives and other basic supplies are pretty well used and worn out.  Especially since they all have to go through the dishwasher after very use. Not the best thing for non-stick and knives. The dining room is filled with banquet sized tables. There is a sunroom off of the dining room with a TV and smaller tables. There is a large family room and toy room downstairs, a computer room upstairs, and a smaller sitting room at one end of the hall with a table where we do Patrick’s school and church.

There is also a wing of offices for house staff. Patrick is a people person, so we have to limit time in the common areas of the house because when I turn my back, he sneaks away into the offices to play with his favorite staff members. I don’t mind him visiting, but he would spend all day there if he could. House rules say that children must be supervised by parents. They sometimes bend this rule and let him visit or help them clean while I am cooking or making his formula, but mostly he is supposed to be with me. So I spend a lot of time stopping what I’m doing and going back and finding Patrick and bringing him back.

So, strange as it sounds, this big room with two TV’s and lots of floor space and few places to wander actually feels like a nice break. Especially since the nurses and other staff are taking care of all the responsibilities that usually have to divide my attention. (Formula, cleaning up, making food.) Turning the superbowl on one TV while Curious George played on the other TV and eating snacks and doing crafts yesterday evening was really very nice.

I wish I could say we were making better ground. Saturday morning, they turned up Patrick’s feeds back to the rate that had made him sick during the night. In daytime hours, he did ok with this. He even felt well enough to each a couple of pretty decent sized meals. And his diapers all looked good. But when night came, his belly started to churn again. He laid awake with a belly ache. I got up and changed diaper after diaper. The diarrhea was back pretty full force. And I was worried that something new was brewing or that the virus had done some irreparable harm. (Hence the Facebook post asking for prayers, in case I worried any of you.)

When the doctors came for rounds, they said that they didn’t love seeing him stool so much, but that his labs were stable so we are still getting him enough hydration and nutrition so far. So, they didn’t got up that last 10 cc’s that he needs to not be on IV fluids.. but they didn’t turn things down either.

They said that this is just his weakened immune system still fighting the virus. Pay attention to this: the virus Patrick has is a common stomach flu. It lasts 24-48 hours in most people, but is contagious for up to a week after symptoms. I was sick for 36 hours. It’s been a week and a half and Patrick still has at least 2-3 more days of hospitalization ahead of him.. and that isn’t getting him back to where he was before he got sick. That is just getting him healthy enough to not need to be in the hospital.

We are extremely careful about germs in our family anyway.. but will be even more so when we get home. And yes, we will ask you to stay away if you are or have been sick. And we will ask you to wash your hands over and over again.

Anyway – this post is quite long. Long story short.. Patrick’s belly is still getting sicker at night than in the day, but he did a little better last night. Odds are good they will try to turn up his feeds one more time today. Odds are good this will make his belly sick again for another couple of days. At least. They tell me this can take transplant patients down for weeks or even months.

We are ok. Honestly, I’d prefer to be at the hospital right now instead of the Ronald McDonald House. Yes, it is exhausting to try to keep myself fed and dressed. But, it’s nice to have the help while Patrick’s belly is so unsettled. It’s kind of nice to be a little alone. And it’s Monday. Which means there will be more help here today. The ward brings food on weekends and comes and gives me breaks as they can. Nurses and volunteers and child life do their best to get me breaks, too. (If I just stop being tough and ask.) So I can just take care of Patrick and me.

Oh – one other thing… I got to see a real Nebraska snowstorm. Church was cancelled yesterday. Schools are closed today. I hear the roads are pretty slick. Curious to go compare this to what I’m used to in Utah. I’m learning things are colder and wetter here.. which usually means more ice. And their roads are so much narrower that I kind of get why things shut down for weather here.

So I’ve been pretending that we’re all snuggled into a warm cozy room for a winter day here. Put aside the reason we’re here, and it’s not too bad.

 

Transplant day 92 and the importance of education

So I don’t have much of an update for today. Patrick’s gut is needing more time to recover so feeds are advancing only very slowly. He might make it back off of TPN tonight. We’ll be here till at least Sunday. We are stir crazy and sleepy, but getting by.

But, with all this extra time, I thought I’d take a minute to write one of those blog posts I’ve been meaning to write for a while. Today’s subject: education.

I have a friend who is a high school guidance counselor for at-risk kids. We had a long conversation the other day about how easy it is to give up when life gets hard and how she sees Patrick’s story as an example. Of not giving up. Of trying to stay positive.

I told her I hoped it also could be an example of the value of education. See, one could argue that I sit around in a hospital room or at home most of the day. I am a stay-at-home mom. What good did my expensive and time-consuming college degree in Spanish and Teaching English as a Second Language do me? Couldn’t it be said that bad luck or circumstance or whatever robbed me of opportunity? I’m not climbing any career ladders. In fact, my resume probably is pretty unimpressive right now.

Except, well, that that isn’t the case at all. The very best thing I could have done for my current situation was to get an education.

Today is my mom’s birthday. And I need to give credit to my mother. She taught me by example that an educated and involved stay-at-home mom was of great benefit to her children and to society in general.

I use my education every day. Small examples: yesterday I had the cramped crowded hospital room cleaned in extra detail because I have made friends with the woman who cleans it. We speak in Spanish. I have enough friends in similar circumstances to not take her for granted. And so when I told her I was feeling cramped and cluttered yesterday, she gave me some extra time.

But it’s more than that. Here are some reasons I am grateful for my education.

1. I learned how to learn. Can I tell you how important is to be able to study out a problem by myself? Patrick needs to start a PPI medication to help prevent future ulcers. (Think Pepcid.) When the prescription went to my pharmacy, they called and said the liquid medication wasn’t formulary. (That means in the list of covered prescriptions.) They also said that starting February 1st, no medications in that drug class would be formulary because they are available over the counter.

So, I went online and and I looked up my insurance company’s drug formulary. I found a list of all of the different types of medications that my insurance would cover. I read up on how each different variation might work differently. Then I called the insurance company and explained why the medicine was needed and why nothing in the approved drug formulary would work to treat the risk of ulcers for Patrick right now. I also explained how no over-the-counter options could work for him.

It worked. My case manager took the issue to the decision makers and by the end of the day they had approved coverage for him. Even in spite of the policy change.

The hospital pharmacist paid me a visit the next day, and also paid me a high compliment. She told her students, “She is really good at knowing her prescriptions and coverage. Don’t expect that from other patients.”

The thing is, I wrote a lot of research papers over the years. I learned how to study, understand a new subject, and then put what I learned into a useful argument. (I took a persuasive writing course that has been especially useful.)

2. I can communicate with doctors on their level. I know that doctors don’t mean to talk down to patients. But I can tell you that they do talk differently to patients and caregivers who have an education. If they don’t have to spend time building a really basic understanding, you will be given more opportunities.

Would you believe that they have patients who don’t know how to use measuring spoons? Have to be taught by a nurse. Or who can’t stick to a schedule enough to give certain frequent medications at home. If it seems that we “get away with” doing a lot of treatment at home, it isn’t by coincidence. I am starting with a more solid base.

3. I use my general education all the time. I was a language and humanities girl. I did well in math and science, but didn’t like them. Guess what? I use math and science all the time. I remember sitting in the PICU after Patrick’s cardiac arrest thinking, “Boy I wish I’d paid better attention in biology.” Now I am learning and paying attention to a lot of that. Can you tell me what dose in milligrams a medication is if you’re giving 2 mL of a 15 mg/mL solution? Yup. that’s algebra. Calculating a replacement fluid dose and rate? Multiplication tables in your head. Trying to figure out how much of which foods to give? Gotta understand osmolarity. This humanities major does a lot of math.

4. I know how to use language. Every industry has its jargon. If you talk the talk, you get more respect. You get less than 5 minutes with the doctors for rounds. In that time, they will read off a lot of medical information boiled down into language that makes it quick to communicate what is going on with a patient. Then, you can either spend your time having that translated to you… or, if you speak the language, you can use it to ask your questions and make requests.

I am asked all the time what my medical background is. Guess what? Just Patrick. But I have a good background in latin and greek roots so it doesn’t take long for me to learn words about anatomy or to learn from their roots what different medications do or are made of. I learned this jargon quickly and that means I know how to use it. I never feel like they are talking over my head. And that means I can be a part of the conversation.

What’s more, I’ve had to do a lot of learning how to reword my language to help Patrick’s behavior. Communicating with a child who has cognitive delays, language delays, and behavioral problems is challenging. It takes completely relearning how to use language to get your message across. It took a lot of time having therapists work with me to learn how, but it makes a HUGE difference for all of us.

5. I can teach my son. This last is probably the biggest for me right now. The version of “Free Appropriate Public Education” being offered through homebound education right now is laughable. Earlier this week, for whatever reason, Patrick’s teacher appeared, decided Patrick was unfocused and would like to be doing something else, and he left. If I didn’t know how to teach, Patrick would be completely behind. We spend time every day working on writing and reading and counting. It not only helps pass the time, but is filling in the huge gap left by our current situation. It means I can grab the moments when he is ready to learn and teach, even if that happens at some random hour in the middle of the night.

6. I can help others. Speaking spanish. Knowing how to cook and to sew. Playing the piano. Understanding doctors and short gut. Being able to research and know how an illness is spread and protect others. Knowing how children learn. Understanding computers. Having a strong scriptural foundation for my faith. All of these skills put me in a position to not just survive myself, but to help the people around me, too. No matter where I am.

I don’t mean to sound arrogant in any of this. What I’m trying to say is this… Education is never wasted. Whatever you learn, makes your life better. I am not working in the workforce.. but I use my education every day.

“If a person gains more knowledge and intelligence in this life through his diligence and obedience … , he will have so much the advantage in the world to come” (D&C 130:19).

So if you’re thinking that right now you’ve been dealt a rotten hand and you can’t do anything to make the situation better. If you’re wondering if it is worth trying to excel in the mandatory subjects at school that you just can’t imagine a real life application for. If you’re thinking it would be better to just give up and focus on surviving right now…

It is worth getting an education. I promise. It is.

Now back to the current application of my education… trying to understand how reaching 90 days post transplant and the end of our insurance company’s umbrella transplant pricing contract is going to change how services will be billed.

Transplant days 53-54, insomnia, and Christmas carols

Photo Brian took while we were singing Christmas carols. Notice that when Patrick is tired he can't stop moving, hence all the pictures are motion blurred from this day.

Photo Brian took while we were singing Christmas carols. Notice that when Patrick is tired he can’t stop moving, hence all the pictures are motion blurred from this day.

Last night was a tough mix for us. Patrick slept the best he has in a week. Brian and I did not. As I put Patrick down, I noticed that there was some blood in his ostomy bag. An intestinal bleed could mean scary things for him.. But we also knew that it was Sunday night and not the most efficient time in the hospital. So we decided to wait and watch. And within an hour and a half the bleeding had stopped.

But for me, that meant setting the alarm clock every 2 hours during the night to make sure it didn’t come back. If that weren’t enough of a loss of sleep, at 4 a.m. Brian got up to go to the bathroom. Patrick woke up and insisted someone needed to lay with him. As much as I love the sweet little boy cuddles, Patrick hogs the bed.

We did finally all get to sleep, but unfortunately, Patrick had labs due this morning so when the alarm went off, I could only snooze it a couple of times before having to wake us all up.

After labs, we left Brian in the room and Patrick and I went downstairs to get him his meds and make his formula. The formula especially is quite a production to make. This morning, though, more than usual. While I was still working on it, the front doorbell of the house rang. I was the only one downstairs, so when it rang a couple more times, I went to answer. Turns out the girl from the office had locked herself out with a couple of people bringing by donations.

Well, Patrick sometimes bebops over and lets people in if they wait long enough. So he went and let them in. It turned out to be a family from a montessori school coming by to drop off some donations. They were waiting for the rest of the class, though, so they came in to wait. Then the bell rang again and this time it was people coming to put that night’s dinner into crockpots.

So here I am, in the kitchen trying to mix up Patrick’s 2.5 gallons of crazy complicated formula with people buzzing all around me making dinner. (And me telling them where to find everything.) And I look up and notice that there’s a little boy Patrick’s age that came over with the Montessori group looking bored but trying to be good. So I grabbed Patrick and went over and introduced him and got them a game to play together.

Eventually, the rest of the Montessori class arrived and they took some pictures together (and with Patrick.) And then my phone rang and it was the transplant team returning my call. And when I came back, Patrick had somehow gotten them to give him one of the gift bags that they’d brought along. As it happens, it was filled with Sesame Street themed things that we now find invaluable.. an Elmo bread crust cutter-offer and a couple of dry erase number and shape writing workbooks. (These happen to be the two fine motor practice things that i didn’t have in dry erase form.)

P.S. the doctors said that the apparent blood in the output was likely an anomaly and not to worry about it unless it came back.

We came back to the room to find Brian on a work call so I made a hurried effort to get Patrick his mommy-school readers printed for the week so we could get out of the way. We went downstairs and spent an hour doing mommy school. I could tell Patrick was tired then. He was happiest just snuggled up doing educational games on my computer.

And as the day wore on, he got more and more tired.

At dinner, we got to eat the chili that had smelled so amazing in the house all day. Then we tried going for a drive to look at Christmas lights. But I got us lost. And Patrick fell asleep. It was kind of a bust.

— picking up this post a couple of days later—

Patrick falling asleep wasn’t the greatest of things for him. He was still exhausted enough to be totally irrational. When he’s tired, the steroids kind of take over and all rational thought shuts off. We were all already tired, but nothing we could do would convince him to sleep. Brian and I went the rounds with him until 2 a.m. when Brian had him downstairs in time out for screaming in the middle of the night. I decided we needed to just find a way for the grown-ups to sleep so I drew up morning meds so we wouldn’t have to go out of the room for them. And then suggested we just turn on the TV for him.

Well, when Patrick saw the room, he decided he was ready to lay down again and went to sleep without much more fight. We slept till a little after 9 when giving morning meds was enough to wake Patrick.

It was kind of a rough morning. I don’t do well when I’m tired. I cry a lot.

But once we got past the morning, we were able to lay down and rest a little and that helped us reset. (Not sleep… just rest. We received several dozen.. maybe even 100.. homemade Christmas cards this week from a middle school, a primary, and Brian’s work so we sat down and read all of those.)

I called the team back one more time because Patrick’s output had been black looking during the night. They came back again and said his labs looked good and he didn’t seem to be feeling bad and that maybe it was the food he was eating. As in, the dyes in the food he was eating.. (That night instead of letting him have a cup of soup at dinner, I served him ham instead of soup. Sure enough, no funny colors.)

After dinner, though, we had something I’ve been looking forward to ever since I started playing the piano here. Our Christmas sing-along.  I spent the quiet moments in the day typing up and printing lyrics to several Christmas songs. We gathered up those of us in the house who’ll get together to do things like this. Plus, the sister missionaries came over. They had offered to come visit and that happened to be the only day that they could come.. and the best day for us to do the sing-along. I figured more voices could only help.

It was a lot of fun to gather around the piano and sing. Everyone was a great sport. We sang everything on my list, and then when we needed to fill some time before our next activity, we took requests. I hope everyone got to sing or hear their favorite.

Then everyone visited for a while and then went upstairs to work on a craft that one of the House employees had put together for us. Patrick and I really kind of enjoyed that while Brian drew up meds.

And then, Patrick laid down in bed and was asleep in about 10 minutes. I think I wasn’t far behind. Looking like we are going to need to explore a new phase in Patrick’s life. Giving up naps.

It is amazing to see how much this has made him grow up. Have I mentioned he also weaned himself from pacifiers? After 6 years and not knowing how he’d ever quit them… the hospital experience was enough to just make him not like them. I offered them back a few days after we got to the Ronald McDonald House. He tried them but didn’t like them. So I sat down and explained that kids grow up and then they are big kids and grownups and don’t like paci’s anymore. He thought about it and then said, “Me too, mom.” He was done. I told him that as soon as I get a chance, I’ll remove the pacifiers from his wubbanub friends and he’s great with that idea.

And that has nothing to do with anything except that I hadn’t told you. So that’s a summary of the hardest 2 days of the week. Next post, Christmas Eve.