transplant – Page 2 – Patrick Hoopes

April and some Easter reflections

Happy April! Don’t you just love April? It is teeming with new life. The trees are in blossom. The tulips opened this weekend. There are little green shoots poking up out of the soil in all of the gardens around my yard. There are birds nesting in the eaves of my house. (No, that’s not necessarily a good thing.)

April and spring also bring us Easter. A celebration of Christ’s victory over death. And spring surrounds us with reminders of the Lord’s power to bring forth life. To turn what appears dead and gone into glorious beauty. It as if all of nature is shouting the promise of renewed life.

April is also national Donate Life month. This year, with our family’s transplant journey fresh in my mind, I can’t help but see lessons about Easter and Christ’s atonement in it. I thought perhaps I would share some of those thoughts with you.

Restoration

In the Book of Mormon, a prophet named Alma describes the resurrection in these terms.

The soul shall be restored to the body, and the body to the soul; yea, and every limb and joint shall be restored to its body; yea, even a hair of the head shall not be lost; but all things shall be restored to their proper and perfect frame. – Book of Mormon, Alma 40:23

I used to say that I looked forward to the resurrection because Patrick and I were going to have a week-long feast. With a perfect body, I want him to be able to taste every wonderful thing that he has missed experiencing in this life. I never imagined that to be even remotely possible in this life.

And yet, since transplant, Patrick is getting to do just that. He is finally able to begin to experience some of those things. It is incomplete. Allergies and diet restrictions and motor deficits from his brain injury still limit him. And we will still need to have our feast.

Transplant is not a perfect restoration. In fact, an x-ray or ultrasound of Patrick’s belly would reveal an anatomy that looks more like a jury-rigged mess. But it is the closest approximation that I know of in this life. Transplant takes what is broken or missing and puts things back to their “proper” frame.

And seeing what a transformation this human attempt at restoration can bring, I look forward with joyful anticipation to a day when not even a hair is missing, let alone major organs. When everything is made right. When little eyes can focus to read without effort. When words don’t get stuck in formation. When little legs can run without weakness. When everything is made whole and perfect again.

Resurrection

There is one part of transplant that I have a hard time understanding. When Patrick was 9 months old, his heart stopped. In essence, he died in my arms. For 2 weeks afterwards, we came back to our house every night not knowing if he would survive. I was destroyed. I had not understood until that time the literal physical ache of grief that accompanies the loss of a child.

Yet somehow, in the midst of that grief, another family found in the midst of that grief the compassion to give the gift of life to mine. Before transplant, Patrick was terminal. We didn’t talk about how very real that possibility was because we didn’t want it to get in the way of his living the life he had. But we knew. We had made plans and were preparing to one day have to let him go.

With transplant came something different. A hope of a full and long life. A gift that rose out of the grief of loss and death. And, in a very real way, Patrick’s donor also lives on in him.

Again, from the prophet Alma:

And he will take upon him death, that he may loose the bands of death which bind his people; and he will take upon him their infirmities, that his bowels may be filled with mercy, according to the flesh, that he may know according to the flesh how to succor his people according to their infirmities. – Book of Mormon, Alma 7:12

Our Savior voluntarily laid down his life. He suffered pain and sorrow so great he bled from every pore. He hung and he suffered and he died. For us. His mother and his friends wept as they watched him die. They laid him in a tomb and they went home mourning. They wondered how and if they would be able to go on. And all of it. For us.

And on the third day, the returned to find the tomb empty. Because Jesus had risen. For us. He overcame death. And because he rose, we will rise. And death is not forever. Loss and sorrow and separation need not last forever. Because of Him.

I see in transplant a whisper of this promise. It is possible to conquer death. And I know that Christ has conquered death and that my son, if he dies, will live again. And so will his donor.

O death, where is thy sting? O grave, where is thy victory? – 1 Corinthians 15:55

Weakness

If you are a medical nerd like me with an interest in transplant, I highly recommend that you sometime read the autobiography of Thomas Starzl, the inventor of transplant. It is called The Puzzle People and it is fascinating to read the journey, the determination, the trial and constant failure that led to this amazing medical breakthrough. It was an amazing confirmation to me that God inspires science and discovery and he leads human beings to be able to master the eternal laws that govern the world we live in.

I’ve learned that in science there are also important eternal lessons. And in transplant, there is an important lesson taught about weakness.

You see, in his early experiments, Dr. Starzl found that he had mastered the surgical technique of transplantation. And yet he struggled as recipients rejected the life-saving organs because they were foreign and seen by the immune system as a threat.

Transplantation did not move from the realm of science fiction into medical science until Dr. Starzl discovered how to use immunosuppression to weaken the body’s defenses enough to accept the transplanted organ. Transplant of larger, more complex organs wasn’t possible until the discovery of a drug called FK506, better known as Prograf, that could weaken the body’s natural immune response enough to protect the transplanted graft. The reason that intestinal transplant is so new and so rare is that the intestine is so large and so intertwined with the body’s immune system that it took such a high degree of immunosuppressive therapy.

In layman’s terms, in order for the body to accept a change as large as transplant, it first had to be made weak. Weak enough to be susceptible to infection and illness.

For the week following transplant, Patrick stayed in the ICU so that he could be given a drug that completely wiped out his immune system. It removed it so completely that they then prescribed him a year of antibiotics, antivirals, and isolation in order to try to protect him. All of his defenses were removed. Because that is the only way to prevent his body from immediately rejecting the gift he had been given.

The apostle Paul wrote about an unnamed affliction that plagued him for years. He frequently prayed and asked for this “thorn in his side” to be removed. And yet, it never was. After much time and certainly much struggle, he recorded the Lord’s response to his pleas.

And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me.

Therefore I take pleasure in infirmities, in reproaches, in necessities, in persecutions, in distresses for Christ’s sake: for when I am weak, then am I strong. – 2 Corinthians 12:9-10

Sometimes, the Lord gives us strength through weakness. Sometimes he leaves us with a thorn in our side, with prayers that seem unanswered, with trials that seem neverending. He does it because sometimes the only way for us to be prepared to receive His gifts.

But he was wounded for our transgressions, he was bruised for our iniquities: the chastisement of our peace was upon him; and with his stripes we are healed.

All we like sheep have gone astray; we have turned every one to his own way; and the Lord hath laid on him the iniquity of us all. – Isaiah 53:5-6

Christ atoned for the sins of the world, taking upon him every sin and sorrow and transgression. But what good is that gift if we, thinking our own defenses are strong enough, reject His grace. Sometimes, it takes weakness first for God to work the change in us that will make us strong. Not all healing is painless.

I am so grateful for Jesus Christ. For His resurrection. For His atonement. For His grace and for His love. I know He lives.

I see reminders of His gifts and His promise of life all around me. In the tulips and the tree blossoms. In tender shoots in garden beds. In the sparrows. And especially in my son.

We are doing well. Patrick’s responded well to the antibiotics he was started on last week. His liver numbers are normal again. We are still giving IV antibiotics. Therefore we are sleepy. But we are happy. And we are healthy. We had a great Easter full of bunnies and feasting and magnificent sermons. This life is not always easy, but it is good. We are blessed.

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.

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.

Sledding in a box works when both the hill and the kids are small. We wore out the bottom of the box, though

Patrick putting some extra color on our snowman. When we started, he just had a red hat. But he was already melting as we worked

When we started, the snow in this yard was pristine. I finally realized most of our housemates are from the south so even if they weren’t at the hospital, they didn’t usually play in snow. This just felt better.

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.

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?

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 said “take my picture by this wall”. So I did.

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

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

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

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 96 and snow days

A shot of the snow Monday morning after it snowed all day Sunday. Before this, there wasn't any snow on the ground. — A shot of the snow Monday morning after it snowed all day Sunday. Before this, there wasn’t any snow on the ground.

My phone rang at 5:30 this morning. It was a recording from Omaha Public Schools announcing a snow day. This is the second snow day of the week. Church was also cancelled Sunday. It is snowing. A little over a foot has fallen.

I am trying to decide if this is premature. The parking lot of the Ronald McDonald House has snowbanks 10 feet high where the plows piled snow. And on Monday, I barely got my little two-wheel-drive car to go up the hill on a road with minimal plowing. I’m not sure that this is more or worse snow than we get in Utah. But the roads are less safe for it. They are narrow. VERY narrow. With no shoulders or turn lanes and cars parked down both sides. Also, everything is very hilly. So, while I grew up on the edge of a valley and our hills might trap us at home while the rest of the valley could manage to get around. Here, you might encounter 3 very steep streets within a few blocks of each other.

I don’t blame them for keeping the school buses home.

It didn’t affect us much with Patrick inpatient. We just watched the snow out the window. Snow days have fewer volunteers and more staff that got stuck trying to come in and fewer child life activities. But we are cozy and warm and protected from the weather. We have lots of toys and TV and crafts and books.

The less snowy days have provided ample help. We had 3 volunteers come by yesterday, giving me hours to get away and grocery shop and clean and rest. The day before, child life and music therapy and physical therapy filled in because there weren’t volunteers and I got to go back to the house and do laundry and pack clothes for a few more days. With nurses taking care of the medications and diapers and formula if I happened to sleep through those needs at night, I’ve actually had a chance to mostly catch up on my sleep in the past 2 weeks.

And that’s very good news. Because this morning, Patrick’s nurse practitioner came in and said that adding extra fluid to Patrick’s feeds had caught up his hydration and she was going to recommend discharge. It took a bit longer for rounds to come around, and I still wasn’t getting my hopes up too much. The added volume that giving more fluids required had made Patrick’s belly gurgle and dump during the night again and I had just changed 3 diapers back to back so I was pretty sure they weren’t going to let us go.

They came around for rounds and asked about Patrick’s prograf levels and they were borderline high and I was almost entirely positive, especially since it was a snow day, that they’d want to keep him one more day.

But, they said that since Thursday mornings are lab days, that homecare could provide the same care they were providing and so we could go. I settled in for a long wait, as discharge has taken till dinner the last few times. But an hour later, Patrick’s nurse arrived with some patient belongings bags and a cart for me to pack up our things and by 1:00, I was signing discharge papers.

Moving us back in always takes work. For some reason, discharge and the monthly diaper delivery always come together and that takes a good hour to make room for in this tiny room as I clean out and haul out old boxes.

But, we got everything settled in. We found time to work on a valentine’s craft, even. Patrick was obviously exhausted and overstimulated and couldn’t focus on much of anything.. but we made it through the evening ok. The dinner group let him start eating early when they saw us come down for a snack. Patrick was tired enough that he preferred playing in the room today. And so things are unpacked and put away and the formula is mixed up and medications reconstituted and line cared for and teeth brushed and pajamas on and by 9:30 tonight, Patrick was snoring in his bed.

I really should get to sleep. I know I’ll need to change at least two diapers and Patrick’s formula bag still needs refilled every 5 hours or so.

It is good to be out. And as discouraging as this hospital stay was, it seems we actually made some ground. We found the cause for the random bleeding I sometimes saw and treated the ulcers. And we found that Patrick can eat enough food to have reduced his overall tube feed rate by 10%. That isn’t much, but eating 10% of his calories is a big deal considering how little he ate before and how few foods he is used to eating.

The doctors have assured me over and over again that he shouldn’t still be contagious. They even went so far as to clear him to attend child life activities at the hospital, which is definitely a statement that they don’t see him as a risk. His gut, however, still isn’t back to where it was before the virus. That is going to take time and patience and lots and lots of diapering supplies.

A little contrast – this is the first room we were in that felt so tiny. The medical equipment was pulled out for vitals every 6 hours, then we tried to tuck it into corners.

Patrick riding a bike with PT. Wearing gloves and gown to prevent spreading germs

A self-portrait by Patrick. His stick figures are getting good.

And he took a picture from the bed of his IV pole and the TV

This is Patrick watching TV in the bed this morning. Notice the difference in the size of the room.

And this was Patrick waiting not-so-patiently after the room was packed up today so we could be discharged

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.

Patrick loves painting.. even if usually he just puts lots of paint on top and watches it drip down the sides.

Once a month, volunteers decorate the windows. Someone suggested they let Patrick do the window outside his room. Here’s his finished product (with some help, obviously.)

One day Patrick and I decided to go to the gift shop. He didn’t want to take off his robe and because cold and flu season is in full swing, I made him wear a mask and gloves. We got a lot of caring smiles this outing.

Patrick flying paper airplanes with the ROTC.

Befana came to visit us and filled our shoes, plus delivered a couple of presents that might have been overlooked when I hid the under the beds at Christmas

A special, private playtime in the newly refurbished playroom. The heater wasn’t working, so we had to wear sweaters and hats to stay warm.

Patrick helping his favorite housekeeper, Tonya, mop his room.

Transplant Day 60 and A Farewell to Louie

I’m blogging from the surgery waiting room and hoping that I can finish this before the surgeon comes out as it appears that they are closing right now.

It’s been an exciting 18 hours. First of all, let’s do a review lesson.

Patrick had an ostomy created at transplant. “Ostomy” means “outward thingy” in layman’s terms. In Patrick’s case, it means that they pulled a little bit of his new intestine out through his abdominal wall and put a couple of small holes in it. The purpose of this was to make it easier to do biopsies. Rather than needing to sedate him to look into his intestine with a scope, since there are no pain nerves in the intestine, they could take off the pouch covering the ostomy, insert a small camera and look at the intestine.. then they could take a small biopsy and screen for rejection. Patrick has had this done 3 times since transplant. So far there are no signs of rejection.

I read in some article while Patrick was recovering a suggestion to name your child’s ostomy. It makes it more approachable. It gives you a kind of code-word to talk about it in public. After much debate, we named Patrick’s ostomy Louie.

Well, Louie had a problem last night. I’m not sure exactly when or how. Probably sometime around dinner Patrick started to guard the way he was moving. Not bending over. Not wanting to sit. And I, in all my brilliance, didn’t think to check and see why. I assumed Louie’s bag was getting full.

Well, at 8:45 I went to give Patrick his medications and get him ready for bed. I asked him to get undressed and he really struggled. He particularly couldn’t get the cover off of his ostomy pouch. So I knelt down to help him and thought, “Gee. That looks funny.” I looked forward and Patrick’s ostomy had “prolapsed” or, in other words, slipped out.

That doesn’t mean all of Patrick’s intestines came out. What it means is that an ostomy is a surgically created hernia.. only somehow Patrick’s had made his hernia herniate and so more of it was out that was surgically intended.

But it was new and still looked good. So I called the on call nurse coordinator. When I told her why I was calling I could hear surprise and concern in her voice. She asked me a few questions and then asked if I could come bring him in.

They have a short term treatment center here that they have their transplant patients come to for minor emergencies. Kind of nice to not have to go through the ER. They checked us in and then called the surgery resident to come have a look. The transplant team was all in a kidney transplant so it took a minute for her to arrive.

When she came, though, she had a look and Louie was seeming a little upset. Swollen and kind of dark colored. So she said we should spend the night and decide what to do in the morning. Then not long afterwards, the surgical attending came in. He tried to push Louie back inside, but without success. He said we should sleep on the problem, too.. But suggested that, as this was the second problem with Louie in the 2 months since transplant, and since Patrick isn’t needing regularly biopsies right now, maybe it was time to consider taking down the ostomy.

So Patrick and I spent the night last night. We went to bed about 2. He mostly got to sleep until just before 10. It was a cuddly, nice night. And nice to have a break from being the one keeping the medical care going during the night. And in the morning, Louie was slowly going back in.. but not quite enough and a revision was looking necessary.

So we talked with the surgeon this morning. Ultimately, we decided that Patrick is a very active child who was going to continue to have problems with this unless something more was done. And it didn’t make sense to put him through a surgery to maintain an ostomy that is rarely being used for the reason it was created.

**Picking up this post at 9 p.m. Patrick’s surgery went well. They were able to take down his ostomy.. The intestine was already connected, so they just needed to close things back up. Nevertheless, this did leave him with good inch-long incision that will need to heal. It isn’t stitched closed. They are packing it with gauze to heal as they have found that this provides better healing, even if it also means a bigger scar.

He has had a hard day. He is sad and he is sore and he is itchy. He wants to eat and drink. He doesn’t understand why this happened so suddenly or why. The pain medicines have made it so he’s slept most of the day, thankfully, as long as Brian or I lay with him. That is probably the hardest thing from our perspective. Getting up to eat or go to the bathroom or really do anything upsets him. So we just try to lay still. There are 2 TV’s in the room so one can play his shows and one can be tuned in to one of ours.

Hopefully this first day or two will be all that is hard. As soon as his gut wakes up and starts moving things through, he can start clear liquids again and then they’ll restart feeds. It will probably be at least a week.

I’m grateful Brian is here to give me breaks and to go back to the Ronald McDonald House for clothing and food. I’m sorry, though, that we are spending the last week of his visit here this way.

Hopefully it will be just a short setback that adds up to a better quality of life for him long-term.

Patrick helping clean at the Ronald McDonald House

We finally found some Christmas lights. This show was a short walk from where we are staying.

Transplant Day 56 and Christmas Day

We had a very unique, but very amazing Christmas day this year.

It all started with a little bit of excitement. Every night sometime between 2 and 4 a.m. I have to get up to refill the formula in Patrick’s feeding bag. So at 3:30 I was up and it seemed to go really smoothly and I stuffed the little stocking that Patrick had hung on the IV pole by his bed. And then I went into the bathroom and the pump started to alarm.

Well, I got there quick enough that it didn’t wake Patrick and I fixed the kinked tubing. And then I noticed a very distinct smell. The smell of Patrick’s ostomy bag leaking. I felt around the pouch and it was definitely starting to come off. That usually would mean waking him to change the bag. But I looked around a room full of presents that Santa had already brought and I knew that if I woke him, we’d be having Christmas right then.

Now, my previous history of early Christmas mornings aside, I also knew that Patrick would not have time for a nap in the rest of the day without missing out on some big fun things. So I took a risky chance. I crawled in bed with him, wrapped him in a towel, secured the bag the best I could, and slept next to him. I knew we’d be starting the day off with a big mess and that we’d have to work hard to keep it from making his skin sore. But it seemed the best choice for a good Christmas day.

I had nightmares about ostomy bags the rest of the night and at 6:30, when Patrick started to stir a little, decided I’d waited long enough and let him wake up. I explained he was wet and needed to go right to the bath. He wasn’t so sure, but I didn’t give him a choice.

We got him cleaned up pretty quickly and changed into his spare Christmas morning pajamas. (We learned long ago that we need two pair of special Christmas PJ’s.) We asked him if he thought Santa would have come and he said no. Somehow, he’d missed all the presents on the way through.

But when he did see them, that’s all he wanted.

We let him start with his little stocking. That was simple stuff. A Dora doll, some hot wheels cars, some silly putty. Then Brian pulled out the big stockings.

I’ll confess. I was pretty worried about Christmas stockings this year. I could not figure out how to go about getting that part of Christmas ready when Patrick needed to be with me and time in stores was limited. Heck, we tried to buy stockings once and had to leave the store without. So when a package from Brian’s work showed up full of gifts, including stockings, I was relieved.

Patrick’s stocking was huge. It took half an hour to go through. Of course, that was the tip of the iceberg for Christmas morning. Between family, friends, DDM, and gifts donated through the hospital and the Ronald McDonald House, we were very well taken care of this Christmas. When I look back at myself a month ago, lying awake in the hospital in tears and unable to sleep not being able to imagine how we could possibly pull together Christmas this year and contrast that with the abundant and generous outpouring that we received I am humbled and grateful.

A phrase from a verse in Malachi kept running through my head. Malachi 3:10:

“prove me now herewith, saith the Lord of hosts, if I will not open you the windows of heaven, and pour you out a blessing, that there shall not be room enough to receive it.”

Indeed – it took most of today to make space to put away Patrick’s many gifts and there is a small collection in the corner of the “too much” that we will probably pass on to other children.

After opening gifts in our room, we let Patrick pick a couple of toys and we headed down to the kitchen to take care of meds and formula. It was fun to see children pop in and out with Christmas presents and smiles on their faces.

Finally, 10:30 rolled around and Santa was due to arrive. Christmas with Santa in the Ronald McDonald House is going to stay forever in my memory. Each family had a pile of presents with our names on them. Most were simple, some were astoundingly generous. Santa went around the room telling the kids about how he’d picked certain things just for them and which gifts were most popular. I’ll never forget the tears in the eyes of one mom whose family had arrived for emergency surgery just a couple of days before who really did think they’d be missing Christmas this year.

And then, after presents, we gathered for Christmas brunch. The Hilton had sent a gourmet meal over with roast beef and turkey and potatoes and stuffing and the yummiest green bean casserole on the planet and about 20 different desserts.

We ate well and then had to reign ourselves in because we knew we had other plans.

In fact, right after brunch, I went up to the room to pack our things to go for the rest of the day. A couple of my very close friends from college married and live two hours away in Iowa. And they invited us out for Christmas dinner. So, we took a drive yesterday. It was fun to see country life in Iowa. And it was amazing to spend some time with friends.

Drue and Rachel have to be two of my favorite people on the planet. They’ve been through a lot in their 13 years of marriage. And now seem so happy and in their element. Both grew up in smaller towns and so it is natural that they’ve settled down in bigger small town in Iowa with 5 acres of land and a historic house they bought for $1 and moved to the lot.

While they finished up making dinner, (smoked leg of lamb and homemade gravy and Idaho mashed potatoes!!) their daughter, Julie, took Patrick out to the chicken coop and he came back with his shoes all muddy.. So then he had to play around in stocking feet all the rest of the evening, which he loved. And they gave him a real metal slinky and showed him how to use it on the stairs, and he loved that, too. And mostly, he was tired because we gave up naps to try to get him to sleep at night and he might not really be ready for that.

BUT he made it and we had a lovely dinner and played Catch Phrase afterwards and reminisced and caught up. And we got to see the stars (something I hate that Patrick misses having to always be in the city so he is close to medical care and clean.) And then we drove back and Patrick managed to stay awake the whole way, which mean he would sleep.

But we ended the day almost as excitingly as it started because one of the bottles of formula opened and spilled in the cooler and so we had to make a new batch of formula and clean up the sticky mess. So we got to bed a bit late and then Patrick woke up at 3 and insisted I come sleep in his bed. So my dreams of an early bedtime and a then sleeping in till 9 were both dashed, but it was still a wonderful Christmas.

And today was mostly quiet with a trip to Costco (then a trip back to the room to replace the feeding button that Patrick accidentally pulled out as he got out of the car. That was traumatic and he talked about it all day.).. Then we took another trip to Costco where we actually bought the totes and batteries we went for. And we spent the day resting and cleaning and playing with new toys. And today we DID make it to bed on time. And maybe tomorrow we’ll even sleep in.

I will never, EVER forget this Christmas. This season brings out the best in us. We are kinder, more generous, more Christlike. And as I read the Christmas story with Patrick this month, I could relate more with the story of Mary and Joseph far from home, staying in a stable of all places as their baby was born. But Heavenly Father knew where they were. And He sent angels to tell ordinary, humble working men – shepherds. And then those shepherds went and it was through those ordinary people that the Lord sent the message that He remembered and He knew what was happening and was was going to happen.

And we, through the ordinary people, have seen the hand of the Lord this Christmas.

Some of you are reading this. I need to say thank you. You may think that what you have done was something small. But this Christmas was anything but small for us. So thank you.

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.

Transplant Day 48 and some Christmas Cheer

It’s been a busy couple of days. Without labs in the morning, I’ve been trying to work on a little bit of a better sleep schedule. I don’t know that we’re getting more sleep, but at least we haven’t been up till midnight.

Yesterday we didn’t have labs and Patrick actually slept till 8 a.m. Then we took our sweet time getting ready and out of the room, which is always nice. It usually means I get some cleaning done.

Because Patrick had slept so late, I decided to try out skipping nap. That meant I needed to keep him entertained for the day instead. I stole a little bit of internet time in the morning while he played in the playroom and I downloaded the new homeschool curriculum I want to use for “mommy school.” (I’m using Reading the Alphabet, if you are curious.) Then we came upstairs and I printed out a little reader to practice with and a reader.

Patrick was so excited to do mommy school. I think he’s feeling as bored and stir crazy as I am. He mastered his book in about 5 minutes. The series I’m using is a sight words preprimer series.. So pretty basic stuff. Just sight words mixed with pictures that he should be able to decipher. This is what he was using in school before transplant so it seemed like a good place to pick up. It’s probably a slower paced curriculum than he’d be getting in a typical classroom, but i figure that anything is better than 3 or less hours a week and the pace seems to match his learning style. Once he had mastered his book, we did a little bit of writing practice with the word of the week, (“a”) and the letter of the week (“Tt”).. and then we took his book to practice reading to other people. Both he and they love this method of practicing reading. I have the feeling that taking his books to the office staff to practice is going to be pretty par for the course.

After a little bit of resting/cleaning time in our room, we got ready for the evening’s excitement. Last night was the hospital’s annual pediatrics Christmas party. A company called Renaissance financials hosts this every year for the inpatient and outpatient pediatric patients. That means that you don’t have to be in the hospital to be invited. They know there are a lot of us here who’ve traveled quite some way and will be here long-term.

The party started with a magician. It’s amazing to me to see Patrick old enough to appreciate these things. He laughed and was awed by the tricks. He really wanted to be a helper, but didn’t raise his hand to say so.

After the magic show, we found our tables and worked on making jingle bell necklaces, marshmellow snowmen, and gingerbread houses made out of graham crackers and take out boxes. We were joined there by one of the employees helping to host the party.

That kind of made this the perfect blend of holiday party for me. It had all of the kid-friendly elements that I’m used to from a school or church party. But there were employees and their wives there for their annual company Christmas party, too.. All dressed up. It kind of helped soothe the part of me that is really missing corporate Christmas dinners.

We had a dinner of pizza and breadsticks. Patrick enjoyed some crust and declared the julienned carrots from my salad “perfect.”

And then, they made us all sing Christmas carols. They top this off with a tradition where each of the 12 dinner tables has to make up and action to do to their assigned day of the 12 Days of Christmas. I hope our 5 golden rings had enough flair.

Then, the night was topped off with a visit from Santa Claus himself. They came and called the kids up for their turns one by one so there was no line or crush. Each kid got some personal time with Santa. Patrick took his to open the present that Santa had brought him.. A big noisy 3-wheeled motorcycle that races across the room when you push a button.

Patrick’s attention was gone pretty quickly after his visit with Santa. We snuck out as things started to wind down and ran to the store to get a few things to make some little gifts for the many people we have gotten to know here. (I’m making angel ornaments out of ribbon, a paperclip, and a bead.) Patrick thinks Michaels is the best store ever.. specially since they had little shopping baskets with a handle he could pull like a rolling suitcase.

And then we came back to the house where all the kids were playing with the toys Santa brought. It reminded me of Christmas morning… which makes me really look forward to Christmas. We have lived with these kids for a couple of weeks now and they are getting to be friends. It was fun to see them sharing toys with each other.. racing around shooting each other with nerf guns and taking turns with the remote control car.

It was especially needed last night as one of the families staying in the house lost their son last night. It is hard to put into words the way that a loss like that hurts in a community like this. We understand more deeply than anyone can the pain of that loss and just want to take it away.

Today has been a pretty low-key kind of day. I got Patrick to sleep last night by 10, but that meant he was wide awake and happy at 6:30. He chose to play on his bed for an hour, though, and when he was ready to go was pretty good downstairs.

The grandparents of the boy who passed away stayed here last night and Patrick has been particularly attached to them all day.. Cuddling up with both of them and playing charmer. He really has a way of knowing what people need sometimes.

Then, when he did leave them, Patrick went to visit his friends in the office. He has made this a bit of a morning tradition. I don’t think they mind much. House rules say they are supposed to give us our space.. but if we go visit them, that is ok. Patrick likes to go visit.

Over lunch, Tyson, the 18 year old transplant recipient, took Patrick downstairs to play in the playroom while I showed his mom how to make homemade frosting and how to roll out and cut sugar cookies. (It’s funny how this is something I have just taken for granted knowing how to do. After a lifetime of baking with mom and grandma, going to church activities, doing crafts, and learning other homemaking skills.. I guess I kind of assume that most people have some experience with these things. But they have been wowed by my skills here and it’s kind of a strange feeling. The things you discover when you leave the Mormon belt.)

I got a call this afternoon from hospital social work asking me to come pick up Christmas gifts. While we were still inpatient, they came and asked if one of the hospital departments could adopt us for Christmas.. given how far we are from home and knowing what our co-pays were going to be. We tried to decline and offer this to someone else, but they insisted that we fit the bill to help. So, we made a simple list for them.

What I picked up today was not simple. My trunk is full. And there was a gift card included too that kind of blew me away.

Anyway – once we finished that outing, Patrick asked to try to play at a park. We went, but he got too cold too fast again. So we came back to the house and let him play in the playroom while I paid some bills and then pulled out my new Christmas music books and played on the piano. This is another thing that I kind of have taken for granted in the past. People who play the piano are limited back home, but there’s a few of us in every neighborhood at least. Here, though.. some of the staff say they have never seen this piano used to play actual music. I am so excited to try a sing along.

Next was dinner. One of the drawbacks of the Ronald McDonald House at Christmas time is that all the dinner groups very well-meaningly try to bring in a festive holiday meal. You don’t want to know how many hams have been served here this week. Patrick is loving it, though. Ham and potatoes is one of his favorite meals and he will happily eat it over and over again. It just makes me smile and remember my missionary days when we’d be fed at member houses and we’d see food seasons. I wonder what food season comes after Christmas.

Then, I ended up letting Patrick stay up just a bit late because we decorated cookies tonight. It was so much fun and I was really grateful for Wendy, a mom and friend in the house, and all of the resources and work she put into getting Christmas cookies into the house. The kids had a great time. Patrick loved it and, yes, I let him splurge and have some frosting tonight. (He’s supposed to be on a no concentrated sugar diet at least until things get a little more stable.)

Our word of the day was “angels”. We read about how angels appeared to sing about Christ’s birth. And then for good measure, I pulled out my YouTube video and watched this awesome video… a record breaker for multitudes of angels in a live Nativity, and heart-touching to boot.

And now Patrick’s finally made it to sleep. I’m thrilled he is asleep before 11 again.. But every night I have grand intentions of getting up and getting to work once he is asleep. I have a couple of presents to wrap and the room needs cleaning and the laundry needs put away. Especially since we have labs tomorrow. But I can barely keep my eyes open. So I’ll be settling on finishing up this post, hunting down an internet connection so I can post it.. and then going off to bed.

Visiting the Ronald McDonald House Staff is a part of Patrick’s morning routine now

A little TV time while visiting the playroom

He wasn’t expecting a present from Santa

This motorcycle is fast and noisy and makes me crazy – the perfect gift

Transplant Day 46 and Physical Therapy

Today was a busy day. I knew we’d need to be up early to start out with labs, but last night was another night where Patrick didn’t make it to sleep till midnight. So when he snuggled up next to me and fell back asleep this morning, I didn’t really have the heart to wake him.

At 8, as my alarm was going off after the 3^rd snooze, I decided we were going to have to bite the bullet and get up. I could tell that sometime during the night Patrick’s ostomy bag had come loose. Thank goodness I’ve got a good drain system set up so it didn’t make a mess that woke us earlier. But it did mean that we had to start off with a bag change right away.

Patrick wasn’t so sure of me when I put him in the tub without waterproofing his bag.. But it actually worked very well to make it come off quite easily and changing the bag went very smoothly. But we were really pressed for time so when the phone rang to tell me they were showing his nurse up, he was still quite naked and wrapped in bath towels.

We hurried to get a diaper on and wrapped him up in a blanket and the nurse was able to draw his labs. Meanwhile, my phone rang and it was the pharmacy. It’s been one week since discharge. Time for a new shipment of supplies.

When we got through all of that, it was already 9 a.m. I begged Patrick to stay on the bed and watch Blues Clues and let me run downstairs for his medicines alone so it could be faster. He agreed and we were able to get all of his medicines given on time. But in the meantime, he was a lot happier in the room watching TV than he usually is trying to entertain himself while I do up meds in the morning. In fact, he happily stayed and played and watched TV for another hour and a half.

That gave me time to clean up the room a bit and to set up the printer that my mom and dad bought me for my birthday. (I knew I’d want to do Mommy School here so that was one of my first wishes.)

Finally, I was hungry and he needed formula made so it would have time to chill before starting the new batch running and we had to give in and leave the room. Besides, Patrick needed me to buy him new socks. So we went downstairs and got ready and went to Target.

Let me tell you about why Patrick needed new socks as it brings you to the next part of our day. If you are new to our story, you may not know that Patrick has an anoxic brain injury and cerebral palsy. When he was 8 months old, his heart stopped because of an infection and some medication they were using to treat it. It took over 15 minutes of CPR to revive him. The result is that the ends of all of the blood vessels in his brain were deprived of some oxygen. That accounts for a lot of his behaviors and most of his developmental delays and learning disabilities.

When you hear the phrase “cerebral palsy” you probably imagine someone with a very severe case whose body is contorted with muscle spasms: someone who can’t eat, can’t talk, can’t walk, etc. That is what you imagine because that is the presentation that you can’t ignore so you ask about it. But what cerebral palsy really means is that at birth or shortly thereafter, the brain was starved for oxygen, leaving the patient with a “palsy” or lack of control of the muscles of the arms or legs or more. The signal from the brain to these limbs gets confused or altered somewhere along the way causing unexpected movements, often causing the muscles to spasm.

Well, over the past week, I have seen Patrick’s hip and foot of his right foot turning inward. He is becoming more clumsy and having a harder time controlling those muscles. I started making him wear his walking brace for half to all of the day. (Enter the need for new, longer socks that would prevent rubbing from the brace against his leg.) We’ve been doing stretching, too, and those muscles are much tighter than they have been in years.

Today after shopping and a short nap, I took Patrick for a physical therapy evaluation in the hospital’s outpatient clinic. I wanted to evaluate his recovery and I was especially worried about this problem with his gait.

The news was good. First of all, Patrick is a “rockstar” from the physical therapy standpoint. His incision is better healed, his movement is better, his pain level is less, and his energy is more than most patients at this point. He is really doing remarkably well.

The therapist said that she thinks that the spasticity in his leg is likely a combination of problems: the trauma of transplant, the effect of new medications, the exhaustion of recovery. In other words, she said that it’s probably something that he’s feeling all over, we just are seeing it more in his leg because that is where he is weakest. She said that for every 1 day in the hospital, we should expect 2 days for his body to recover. Considering that he spent 39 days in the hospital, it will be a few months before he is back to full strength.

The prescription is simple. Keep doing all of the exercises we were working on at home for leg strengthening like climbing stairs, squatting and tiptoes, bike riding, jumping. But, for the next little while, have him wear his brace so that while his nerves and muscles are relearning and recovering, we are training his body to move the right way. Patrick is not amused by this prescription. He keeps asking me to let him take his boot off because he feels like it’s in his way.

The therapist said that she is seeing such progress in the area of gross motor skills that, given our insurance policy’s very limited therapy visits, that she feels like physical therapy would not be her focus right now. She recommended instead that we take advantage of the opportunity to work with an occupational therapist who specializes in feeding in kids post-transplant while we are here.

She also said to allow him lots of rest. And I think that I realized today that doing so may require a little more keeping him in our room. When we hit our room, all of the sensory overload caused by the rest of the house melts away. He is happy watching TV and doing crafts. Tonight it finally clicked for him that the tote in the corner is a toybox and that he is allowed to go get those toys out and play with them.

I don’t know for sure. We’ll need to find a balance so he gets social time, too. We both need it. But we both were much happier with some quiet, one-on-one free play time in the room.

We had another special treat tonight. One of the men from our church who helps bring the sacrament has talked for a while about inviting us over for dinner. Well, tonight, we got the chance. That was really such a treat! Patrick had a great time playing with their two little ones (ages 3 and almost 5). I spend some time with some other adults about my age whom I have a lot in common with. And just take a break from all of this medical stuff for a while. But also, without a ton of explanation. He has been visiting for a while now. He was also the anesthesiologist on Patrick’s case the night of transplant. So they know the story and some of the things they should expect. It was good to just be normal for a little while.

We were both sad to see the evening come to a close. But it was bedtime and we needed to unwind to go to sleep here, too. Setting up my printer meant I also set up a place my laptop can sit next to the TV, so we were able to turn on one of the new DVD’s that Brian’s parents sent him. We watched Curious George’s Christmas while I cleaned up the room, prepared feeds, drew up medications, and got Patrick into his pajamas.

He made it to sleep by 10:30 tonight which isn’t the greatest, but is better than midnight. He also is starting to prefer to go to sleep in his bed on his own. He won’t admit that. He would love for me to lay with him. But he has started to do his usual putting himself to sleep routine if I’ll just lay with him for a bit, then tell him it’s time for met o kiss him goodnight. I kiss him and go lay in my bed until he falls asleep. Then I get up and try to get done whatever was waiting for him to rest.

Tonight while I waited, I decided to poke around Pinterest for kindergarten homeschooling ideas as Patrick’s teacher was still sick today and an hour a week of school is certainly not getting him the education he needs or that his little mind is craving. I am thrilled to say that I stumbled across a curriculum that looks like it will pick up exactly where he left off at school and that really fits his learning style. It even has little printable readers. (I’m trying to decide if I print them or see if it’s possible to throw them into an e-reader format to save on printing). I’m excited to grab a little bit of playroom time tomorrow morning so I can get it downloaded and start working on it.

One last bit of news, then I have to post this and get to bed. My eyes are drooping. Patrick’s transplant coordinator called this afternoon. The great news is that his prograf level is finally in range. Just barely, but it’s there. That’s the first time in a week. That means no medication adjustment. It also means that we get to switch to twice weekly labs. And THAT means that we can sleep in in the morning if we’re tired. At least till meds are due at 9.

However.. you probably wont’ get to read this until then because I am just plain too sleepy to go hunt down an internet connection until morning.

Transplant Day 43 and Celebrating 11 years

(Sorry.. Internet connection isn’t doing syncing pictures right now. Will edit and add later if I can.)

Today is our wedding anniversary. The week has been so crazy that I wasn’t sure how today was going to turn out. We got the day off of labs so we slept all the way till 8 a.m. But then when we woke up, getting ready quickly was important. Still have to get meds from the fridge downstairs by 9 a.m.

But the morning routine is getting better. Brian sent a package yesterday and so I opened that while Patrick was in the bath. It had a few thoughtful little gifts in it. It made me really, really miss my best friend. But one of the gifts was a necklace that I have been able to wear all day to remind me of him. I have been so glad that we went big with a Disney trip last year as we’ve had to spend this day apart.

Thankfully, it’s been an overall happy day. A group home nearby comes every day to clean the playroom toys. Today, they were later than usual, which meant that we got to spend the morning downstairs playing. The rest of the house was really quiet so it was a great time to get to be out of the room. That’s how you got multiple blog posts today.

I ordered Brian a pizza and pizza cookie. I really wanted to find a way to send him warm cookies for our anniversary.. And to tell him that I’ve been working on other plans. The pizza place was kind of enough to put a note in the pizza for me, even. Then Patrick and I went upstairs.We stopped by the office because they kept coming and telling me I’d received flowers. (Don’t I have a sweet husband? It’s fun to get flowers in a place where people get excited about them coming.)

Then I made lunch and I fully intended to put Patrick down for a nap. But then my phone rang and it was his homeschool teacher cancelling class today because he had a fever and was going home sick. Then, people started to come inside and tell us what a beautiful day it was outside. Patrick had been begging me to take him for a walk in one of the house’s wagons. So, I gave in.

We had a great time. (And I met my FitBit step goal for the first time in almost a month.) And, yeah, it was so nice that I still didn’t feel right making Patrick go sleep the day away. Instead, I offered to take him to the park. One of the moms here pulled out a local guidebook that they’ve put together and gave me the address of a nearby park. It was only a few blocks away and it was perfect for Patrick’s mood. Quiet. Small enough to not be too hard for his recovering body. He was so happy he was literally jumping up for joy.

Then he got really, REALLY tired. He asked to go back to sleep, but then remembered that he had a $1 bill in his pocket that had come in the mail yesterday and he was dying to spend it. I wanted to do some shopping anyway, so we packed up in the car and we drove to one of my favorite on-a-budget stores: Aldi.

But we didn’t find a way for Patrick to spend his money there. I had, however, noticed a Family Dollar on our drive out and knew that they bring in crazy cheap toys for Christmas. So we stopped there instead. He picked out a remote control car. (Ok ,ok. Not $1. He actually had another $10 that he’d forgotten about so I gave it to him to spend when he spotted this car.) I found a shelf of kid’s knit gloves. I’ve been looking for those EVERYWHERE! Patrick can’t help himself touching things everywhere we go. Kid’s vinyl gloves are not really accessible and also not really comfortable. But little knit gloves? We can stick those in the car and put them on when we get somewhere he might need them. And then, we can bring them home and stick them in the wash. I bought 14 pairs of knit gloves. Some are pink. Patrick insisted. And that’s ok.

When we got back, he really WAS tired. I meant to come back and just cuddle up in the room and watch TV and maybe he’d fall asleep for a bit and that would be ok. But his new car required a screwdriver to get open. And then we discovered that there was a big stack of mail for Patrick today.

Oh my gosh do we feel spoiled today! Savannah, Maria, Emily, and Clarene.. Thank you! Those packages just on time to make today feel a little more special.

And speaking of special, tonight’s dinner group brought along Santa Claus. Patrick was so excited to see him again that he ended up first in line. But then he froze and couldn’t remember what he was supposed to tell him he wanted. He also pulled one of his new favorite tricks on him and pretended he didn’t know his own name. It was a great Santa moment.

Santa brought a bag of beanie bears and Patrick picked one out with polka dots, then named her Chrissy after his favorite friend from school. (Have I mentioned that I taught Patrick about naming stuffed animals this week? He’s received 2 others this week. A stuffed dog he named Cookie. And a purple teddy bear that he’s bounced back and forth between calling Pink and Cute Bear.)

Anyway.. once Santa left, Patrick was for sure ready for bed. We came up to the room and he went and picked out his pajamas. I told him he could start changing while I got meds.. But with the hospital here preferring that we loop his line up instead of down, he accidentally tugged it and pulled his dressing off. I did my first dressing change here. It went ok. Patrick actually did a decent job helping out.. being my non-sterile hands.. a job usually reserved for another grown up. And we managed to get by with the very different dressing change kit provided by a new homecare company.

Then, we make a very quick Christmas ornament, read our nightly scriptures, practiced how to pronounce “Bethlehem”, said our prayers and laid down to sleep. Patrick was out in minutes and is fast asleep now.

So I’m wrapping up this blog post and hurrying off to the kitchen to get some more formula for the night and post what I’ve written. Then, if I’m lucky, I hope to get my husband on the phone for a bit on our anniversary.

11 years is worth some celebration! Especially 11 years married to my best friend. We’ve known each other over half our lives. Howie (or as you know him, Brian) has always been my anchor. He calms me down. He teaches me patience. He has carried me through all of my hardest times. It doesn’t matter if we are right next to each other or oceans apart, we have always been best together. But I sure am excited that there’s only one more week of this particular apart time because I miss him a lot. Especially today.