Patrick Hoopes

Transplant Day 41 and Home Away from Home

Ok – lest there begin to be rioting in the streets, I am grabbing a moment with Patrick finally sleeping. I can’t get my laptop to work inside my room at the Ronald McDonald House and my brilliant husband isn’t here to fix it.. So the only way I can get both internet and a keyboard is to sit in the kitchen.

So – here I am. What can I tell you about the past few days?

Monday morning, Patrick was looking and feeling great. The labs confirmed that Patrick’s medication levels were in the safe range. That meant that it was ok for him to be discharged from the hospital. I’d forgotten what a big feat that is when you are setting up all new home care. All day long I cleaned and packed and then tried to throw in playing and resting time with Patrick. He was excited so he couldn’t fall asleep to nap, but as the day wore on that meant that he was more and more tired, and therefore more and more excited.

The insurance company seemed to throw a kink in things right at the end, saying that Patrick’s formula couldn’t be covered through the home health agency and needed to go through a pharmacy instead. I had some worried conversation and made several phone calls and then finally decided to call directly. It turned out to not be the a problem at all, just needed to be preauthorized. But it created a fair amount of worry for a few hours.

Otherwise, though, we just sat and twiddled our thumbs until late afternoon when the pharmacists and case managers and everyone started to finally come in. I ran to the pharmacy to pick up one last prescription. It sounded easy, but took several phone calls and two trips to the pharmacy to sort it out.

Thanks to that, we ended up not leaving until 6 p.m. By then, Patrick was beyond tired and I was frazzled. We arrived at the Ronald McDonald House right before dinner time. Patrick was really scared about moving out of the hospital. He kept asking me who the nurse was going to be and if we could go back.

We had a mountain of medical supplies arrive as we did that needed to be put away. It took all of Tuesday to get things out of boxes and into shelves and drawers and otherwise in a state where I could work with them. Especially because Patrick was following behind me trying to explore and help as i worked. The room looked like a tornado hit it. I had two huge piles of laundry. And medical supplies just overflowing.

The medications were especially intimidating to me, when it was time to start giving them I started to really wonder if I’d been paying good enough attention. But we made it through and Patrick slept for the entire night in his bed by himself. It was amazing.

The next morning, we woke early and hurried to get ready so we could get ready to meet the home nurse. We’ll be doing daily lab draws for a while to check his medication levels. They also required that someone come and watch me mix Patrick’s first batch of formula. I guess they have problems with someone mismeasuring.

However, it was nice to have the second set of eyes on the problem as it turned out that Patrick’s formula required 2 liters of water, plus nearly 3 cups of powdered formula and I ended up pouring from one pitcher to another to make the full batch.

After that, the priority of the day was moving day. We went grocery shopping and to get some things from Walmart (including a bigger pitcher). Patrick was so tired after just half an hour shopping that he was hugging me and begging me to go. But it was good to know that we had food choices in the house for him. With his allergies, he needs to have his own food.

We came back to the room and got Patrick as much of a nap as possible, but after about an hour my phone started to ring with different people checking in to see how Patrick’s first day was going. That woke him and then we were up and running again.

Patrick’s medical care is a pretty strict schedule right now.

At 7, I give him an anti-nausea medicine through his g-tube while he sleeps. We get up around 7:30 to get ready for the day. We cover his line and his ostomy to get him into the bath. Then get dressed and draw up the morning medicines. (At least the ones that are in the room.) I open 6-9 different pills and dump the powder out and mix it with water for one medication. Another 2 have to be kept in the fridge downstairs. Then I pack up the materials needed to draw labs off of Patrick’s line.

The nurse arrives at 8:30 and takes a set of vitals and draws labs. Then at 9 we give medications.

His formula has to be mixed once a day. I’m only supposed to put 4 hours’ worth in the bag at a time so we have to refill and reprogram regularly, including during the night (unless I can talk them into a bigger bag with ice with it with next month’s order.)

Dinner is at 6:30 and Patrick loves and can’t focus at all during dinner. He is all over the place when we are out in the house.

His prograf levels have been too high for the past couple of days. That means that he is struggling with insomnia. That is made worse by the fact that I can’t just lay down and sleep in his bed next to him if I’m going to be up doing medicines and refill feeds during the night.

Today, he was dead tired all day which made it really hard for him to focus on anything. We did get the laundry done. We tried to go play in the playroom, but timed it just as the volunteers who clean the toys arrived. So we went to our room and I decided to make him nap instead.

Today during nap, I figured out how to make the door stay quiet enough for me to sneak out and I was able to get out and eat lunch and move along laundry. And that made him rested enough to make it back to the hospital on time for a last-minute invite to go meet Santa.

Patrick was adorable with Santa. He thought he’d be there with his gift, but I explained we were meeting him to tell him what he wanted. So as soon as Santa came up, he told him his wishes.

Then, they gave him a gift. He tried to return it because it wasn’t what he was asking for.

It was hard to drag him away, but his teacher was coming for school today. That didn’t go great with him being tired.. But once we got past that, I was able to see a little more clearly how he was feeling. We finally ended up in the room letting him lay on the bed watching Blues Clues and that went a lot better.

And then tonight, we had a talk about the fact that I’d need to get out of his bed to take care of him but would be back. And, although it took an hour and a half to fall asleep, when he finally made it, he did so deeply and without tears.

And that’s how I’m here writing right now. I’m not doing a great job. I’m fairly distracted.. But at least you know a little bit how things are going. Patrick’s needing pretty constant supervision so even though it doesn’t seem I’m doing a lot as I describe my day, I’m working pretty constantly from the moment I woke up.

We’ll do better with time to establish a routine. And as they get Patrick’s prograf levels in range so he doesn’t feel so crazy. I just keep telling myself, a new normal takes at least a month.. and more if it’s a big new normal.

Meanwhile, it’s nice to be where there are other moms kind of watching out for us and people cooking for us every evening. Even if it is easy to get stuck talking when I should maybe be doing other things.

Please forgive me for no pictures. I’m realizing now I left my phone in my room and can’t add pictures from it on the laptop. Maybe i’ll add a blog post just for pictures.

For now, though, I’ve got to go get back to the room before Patrick misses me.

Transplant Day 39 – Outpatient we go!

Emily asked me (Brian) to post a quick update tonight.

Emily and Patrick made it to the Ronald McDonald house tonight. This starts another chapter in the transplant journey. Needless to say things are a little hectic for them. Both are excited and nervous at the same time. But they are doing well.

Here are some pictures of their departure from the hospital:

Transplant Day 38 and Look Mom!

Patrick has been DYING to get his hands on this statue of Robert Frost since he first saw it. We also visited Thomas Jefferson and some other sculptures today.

‘m blogging at 3:30 p.m. because I expect Patrick to sleep all afternoon. He had a pump alarm at 5:30 a.m. and the nursing staff tried to pull a “while you’re awake” rush at vitals and other care. The result was that he was wide awake, and since labs were due half an hour later.. well, he was up. But I wasn’t ready to be up, so I we talked and agreed to turn on Blues Clues so he wouldn’t wake up the neighbors and then I layed down and slept while he watched. I’ve decided that, given that insomnia is a well-known side effect of steroids, I need to just go with the flow when he can’t sleep and this is one solution that has worked.

The problem is that this worked almost too well. Patrick would wake me every 10-15 minutes or so and tell me something about his show. And I’d tell him I’d get up at the end of the episode.. then I’d fall asleep again. It was like I was a teenager with a snooze button again. I slept till 9.

But it worked for us today. When I got up we were productive. Bath. Dressed. Playtime. Meds. Cleaned up the room. Zofran worked so when he got up, he felt fine.

Rounds came early. The doctor heard Patrick’s number and looked at me and said, “Well, do you want to go out?” He was entirely sincere, I think. The resident, however, got this panicked look on his face and said, “The coordinators (transplant coordinators) said not on the weekend!” I knew that really they need tomorrow to pull things together the right way and kind of laughed it off. It’s good to hear that they are earnestly considering discharge, though.

We’ve had a good day so far. The morning kind of dragged. Hospitals are so quiet on Sundays. We did a little bit of primary (Sunday School). It didn’t go over as well today. Patrick’s body was saying “move” and so sitting talking wasn’t going over so well. Singing time was a little better. I bought a little app that plays the church songs with a bouncing ball over the words and I sing along. He mostly just watches me. But I did get him to try and repeat one of the Christmas songs. And we watched a couple of videos. Today we talked about the resurrection and Patrick hands down refuses to believe that Jesus died. He knows “He is just ok, mom!” So I tried to explain that He died and is alive again and we used some exam gloves to demonstrate the spirit in the body and not. But I think this concept is still beyond him, oh well.

Because Patrick was needing to be up and moving, we went to the playroom. I set up bowling. He took one throw, then grabbed a chair and told me bowling was better sitting down. Yeah, his body is saying move, but it’s also saying “Gee, I’m tired.” So we tried bowling from a chair and that didn’t work so well. So we tried just sitting on the floor rolling a ball back and forth which worked better, but wore him out pretty quickly, too. He got up to play with magnets and his feeding pump started to alarm because it had run dry.

He ran away so fast once he had a backpack on that I could barely catch a picture

Today, though, that was good news. I asked his nurse this morning how she’d feel about letting me use Patrick’s home pump for the afternoon. That way, I could practice with it, Patrick could get used to it.. and we could take advantage of how dead the hospital is on a Sunday.

No sooner had I put the pump in the bag than Patrick was asking for it on his back. And with it on, away he went! He just about ran out the door without me.

We went all over the hospital today. We went up to the NICU where the rooftop garden is. The garden doors were locked for the weekend. (BOO!)… But Patrick insisted on playing on the flight of stairs leading up to them. He long flight made him huff and puff, but he found a set of 4 steps that he declared were “easy peasy.” And, easy or not, he tried them a few times.

Then, we decided to walk over to other hospital building called Clarkson tower. Think walking from Primary Children’s to the University of Utah… only with the connecting corridor being about 2-3 times as long. We had to stop to take a few breaks. Thanks goodness for benches and Christmas trees along the way. But he made it… and at one point, he shouted, “Look, Mom! I’m runnin’!” And away he went down the hall until he couldn’t go any more.

We visited the chapel. We played in the guest pavilion. We found every Christmas tree we could muster. We passed the attending surgeon on the way and he gave Patrick a HUGE smile. (Bet that wins some discharge points.)

He claimed to really like this view. I think he really liked the window ledge to rest on.

We washed our hands about a billion times. (Patrick is more than happy to wear a little portable hand sanitizer around his neck and wash his hands as well as the hands of anyone else standing near him.) We practiced pushing elevator buttons with wipes and with our elbows. We talked about what it’s safe to touch and what’s not safe to touch.

Learning to be immune suppressed is going to be a big stretch for Patrick. We’ve always said that Patrick was fragile, but needed an immune system and so we have exposed him to as much as possible before. Now, the opposite is true. Before, a cold would have taken him a while to recover from but he could fight it. Now, he might not be able to fight what for us is just a mild virus.

So hand washing and mask wearing and no touching and germ fearing and crowd dodging are going to be our norm. At least for the immediate future. The transplant team here has told us not to keep him in a bubble. But also to be careful. And right now we may be erring on the side of too careful… But this recovery has also gone too well and we don’t want to risk undoing that if not undoing it is even an option.

We came back to the room to take the sacrament. Patrick has really taken to the young men’s president who brings it. He just squeezed his way right into his arms today. And for the first time in weeks, he swallowed the bread.

Of course, he also has had 1/4 cup of chicken broth and a few bites of pasta today… all his own idea. There may be hope of eating yet. Especially once we get outpatient and the foods are safe and familiar. If I can just figure out how to teach him it’s ok to swallow now.

Anyway – I expect we’ll wrap this day up with a video chat with Daddy and the family at Sunday Dinner back home in Utah. We’ll make our Christmas advent ornament while we watch the annual Christmas Devotional, one of my favorite holiday traditions. And then bedtime might be a bit late because Patrick will have napped late. And if all of that holds true, this post will auto post at 9 p.m. tonight. (If not, you’ll never even know I wrote this last two sentences.)

But for now, with Patrick napping so deeply, I might as well see if I can get a few things done just in case we do make it out of here tomorrow.

Transplant Day 37 and Saturday is a special day

Well, despite the rough night last night, we have done our best to make today a better day. It still started out iffy. I woke up with a tremendous headache and a backache, too, because Patrick found the button that turns off the auto adjusting mattress. I thought this would be better because it wouldn’t keep sinking on my side every time I moved. However, without that extra inflation, sleeping pressed into the corner of the bed with Patrick on my arm just made my back hurt.

But, at 9 I managed to sneak out of the bed with him still asleep and take some pain medicine and have the morning conversations with the doctors and nurses without waking him for a little. I also got on Amazon and used our Prime account to order a few of the supplies that we desperately need for discharge that I just don’t see how I’m going to make it to a store to buy. (If you don’t know this about my faith.. we don’t shop on Sundays. Goes back to the 8th commandment where it says not to make your servants work on the Sabbath.) Sure hospitals are 24/7 and medical emergencies force my hand from time to time, but we try REALLY hard to stick by this principle and not many any more people work for us than necessary on Sundays. So shopping had to be done today or it won’t be done. But back to the story..

The team rounded early. That was nice because it meant I wasn’t stuck here. There were no changes in the plan. Just trying to get the right medication dose. Alas, at 4 p.m. we learned that the morning dose had been low still. That means that tomorrow and Monday’s levels have to both be in the target range because we need back to back good values before he’ll be ready to go.

I did get one thing right, though, in my advocating for his care. I asked the nurse to give him his zofran an hour before the time he usually wakes up. And, for the first time in 2 weeks, Patrick got up without being nauseous. That made a HUGE difference for how the day went. Getting him ready was so much easier because he felt good enough to sit up to get dressed and for his bath. I think that’s going to be a daily change for a while.

At 11, Patrick’s nurse managed to round up a volunteer for me. There may be only one who comes on Saturday, so this was a bit of a miracle. I hurried off to the Ronald McDonald house to try to address the very serious problem that I was out of clean clothes. I ran into another transplant mom I know there. She offered to help get my laundry dry and to my room which was a HUGE blessing. The washing machines at the RMH are slow and you just can’t really finish laundry in the 2 hour window a volunteer can stay. So I got the clothes in the washer and then collected the day’s delivery of packages. (I wonder if they hate me, we have so much come mail order.)

Today’s shipment was an assortment of medical supplies and a set of small plastic food storage containers. The latter made me very happy as it made it much easier to raid the leftovers from last night’s dinner at the Ronald McDonald House and bring them here for lunch.

I even managed to get back to the room on time.

Patrick and I had a good afternoon. We had lunch and then attempted a nap. (But failed attempts at sleep can sometimes make sleep times for the next several attempts harder. He didn’t nap. And just now, bedtime was harder than usual.. though he did make it so sleep pretty quickly once I told him I was going to go blog so I wasn’t a distraction.)

We are running into some sure signs that Patrick is feeling like himself again. He doesn’t want to sleep away from home. It’s getting hard to get a good blood pressure reading because he won’t hold still. The room is cluttered with bits and pieces of his toys and crafts. I am spending most of my time just watching trying to keep him safe.

We did make it to play in the playroom a bit this afternoon. We ordered up dinner from room service. Patrick has been excited to try their roasted potatoes and did as good of a job tasting them as he ever does. I am hopeful we’ll make more progress once we get outpatient and I can cook for him.

Then, this evening I decided to double our evening walk. Last night as we walked to the cafeteria, we saw that they had put Christmas lights in one of the outdoor gardens. So today we walked down to that garden to see the lights. He only got tired and asked to be carried once. (Goodness is he heavy with these weak muscles!) He didn’t last long outside, but he made it all the way back after just a short break and was even kind of skipping/jumping along the way. I have good intentions to bat my eyes and see if I can’t get a nurse to let me “practice” with his portable feeding pump in a backpack tomorrow and see how far he can go if the pump battery doesn’t die and bring us back.) One nice thing about the hospital being dead on the weekends is that it doesn’t seem as dangerous to go play in the halls.

We read some books using the Readeo account his Uncle Mark bought him, and then put him to bed. Like I said, he tried to play and stay awake. This is also typical, feeling-himself Patrick behavior. But his little body needed rest and he was out within 5 minutes of me biting the bullet and saying I couldn’t lay with him because he was trying to play with me.

Transplant day 36 and almost

A Christmas tree appeared in the playroom yesterday. Patrick had a great time exploring its ornaments.

Well, Patrick had another spectacularly good day. We started with the goal of him getting out of bed by himself, since he’d climbed in by himself the day before. This was harder than expected, given his morning nausea.. But that information was helpful because I haven’t been able to tell if he actually needed zofran in the morning. We think he does and we made a plan to give it every day for a while. Hoping he starts his days off better…

Because once he’s up, he’s up. He had a great day yesterday. He’s up and around the room now. Physical therapy came by and we checked the fit of his walking brace that we had repaired. It was a bit shocking to me to see just how ill-fitted it is now. His muscles have diminished so much over the past month of bed rest. But wearing it as needed shouldn’t do him harm. And the goal now is to build those muscles back up.

So she got him up and we walked to the playroom and played with magnet letters for a while. Then when he was good and tired, we came back and took a nap.

IMG_20141205_122907

Overall, the day was chaos. Patrick is doing well enough to meet the criteria to be discharged from the hospital. Unfortunately, the levels of prograf (anti-rejection medicine) in his system have been either too high or too low. Until those levels stabilize, he needs to stay inpatient. The lab results were late coming back so for the morning, we got ready for discharge just in case. And in the afternoon, even though the level came back too low, we were still getting visits to discuss discharge planning. (I wish I could say this was more exciting, but we have been having discharge planning conversations off and on for a couple of weeks now.) It meant, though, that we had people in and out of the room and a lot of chaos all afternoon.

It also meant that I couldn’t leave the room to go do any shopping or laundry or other preparations for the weekend. I think this was the hardest part of an almost discharge. Being here alone means that I get very little time to get out of the room and to take care of those basic living needs for me. Once, maybe twice a day, a volunteer will come by for 1-2 hours. For the past several days, the team has had me spending those precious got-a-volunteer hours preparing for discharge. But that means that the other things haven’t gotten done and there aren’t other opportunities later to make up the difference.

So, since evenings are when there are no volunteers and the nursing staff is busy starting a new shift, I gave Patrick a choice of ideas for dinner. We decided it would be good to take him for a walk. Now remember that he has been riding in a wagon anytime he goes outside of the unit. Yesterday’s walk was about 6 times farther than he’s used to going. He was extremely winded by the time we got to the cafeteria. But he was a great sport about it. He even kept his mask on and washed his hands with hand sanitizer and let me clorox wipe his chair before he sat down.

We bought him some chips and me some sushi. In the end, he was too tired to eat, though.

We came back to the room and I was sure he was going to crash. We did his advent ornament craft while waiting for the nurse, then decided she wasn’t coming before evening meds. We video called daddy, then got ready to sleep.

But wouldn’t you know it, that’s when Patrick’s nurse came in. And I made the mistake of telling her that I hoped to make up for not getting away for laundry and/or shopping by going after Patrick went to sleep.

I’m not sure entirely that it was that.. it could have been the stuffy nose that the dry hospital air is causing.. or that Patrick could sense my growing anxiety. But last night, Patrick decided not to sleep. I tried everything I could think of. Finally, about 11 I gave up on my plans and just tried going to bed. A little before midnight, Patrick went to sleep.

I didn’t sleep great. I woke up several times trying to figure out how to get laundry done before we completely ran out of clean clothes and some things purchased that we’ll absolutely need by Monday. I’ll blog again later today and you’ll see I found a couple of temporary solutions today. But I’m going to have to find a better way to balance time and a better or different way to use helpers. Because this method isn’t working and it appears that sneaking off in the middle of the night to make up the difference like some other moms do is not going to be an option.

Transplant day 35 and no news is good news

This is going to be kind of a nothing post, because pretty much nothing happened today. I got up as soon as Patrick woke up and told the nurse I needed to run back to the Ronald McDonald House. I had a shipment of diapering supplies there and needed to pick up Patrick’s medications from there so I could be trained on them. I did my best to finish all the work in record time but, alas, I was 5 minutes late getting back for rounds.

I’ve been beating myself up about this all day because the adjustments they made today are just so mediocre that it’s hard to feel like we are going to gain any forward momentum anytime soon. Patrick is back to full feeds. Today, they added giving enteral replacement fluid back into the mix. (I asked them to do this yesterday, but they didn’t think he’d need it because his outputs had been lower. This is the problem with a rotating team. They have to try everything new.)

And otherwise, things have just been quiet today. We did some crafts and played with toys. I drove to the west suburbs to buy a little kid’s desk I found on craigslist. My goal today was to get back to Patrick moving freely about the room to play. He stumbles a little over the IV pole, but overall has done quite well.

IMG_20141204_135130 — Patrick and Captain Fred

We went down to pet therapy. I was going to skip it because it was naptime and because he seems pretty hesitant to interact with the dogs. (And because it’s in one of the highest traffic areas of the hospital so I’m nervous about germs.) But alas, child life popped in to invite him while I was out of the room and his heart was set when I got back. He was pretty uncertain at first, but we found one of the dogs who would shake and sit up to the side of Patrick’s wagon, and he warmed up to the idea a little.

I’m afraid this is what posts are going to look like for the next little while and I wonder if I’m going to be boring you with them. The attending surgeon this week seems to be pretty conservative and hasn’t even mentioned the possibility of discharge.. However, other than making sure that medication doses don’t need adjustment, right now, Patrick is doing pretty darn well. He’s come a long way in the past week and even in the past 4 weeks.

We’re coming into the weekend, though, so child life adventures are over and volunteers are more sparse and other than having to do some laundry and grocery shopping to get us through the weekend, there isn’t much to be done here.

I am stir crazy, can you tell?

So let’s relive some of yesterday’s fun. I said that no video had been posted from yesterday’s news stories. But two came online today. I still can’t believe I let them put me on TV in this state.

http://www.ketv.com/news/carolers-bring-holiday-cheer-to-nebraska-medical-center/30042774

http://www.jrn.com/kmtv/news/Carolers-Spread-Christmas-Cheer-Through-Nebraska-Medicine-284705651.html

Transplant Day 34 and child life

It was so great to get Patrick to bed on time last night. He slept well and even slept in a bit. But we were up on time to catch one of his favorite volunteers first thing in the morning. I was glad she came because Patrick’s nurse was really busy and without Brian to provide backup, getting up and going was a bit of work.

IMG_20141202_100627 — A before picture from yesterday’s bathtime

And we needed to do it quickly. Once a month, some stylists come in and give haircuts to any kids who need them. Patrick’s last haircut was in September. He definitely needed one. They trimmed off an inch and a half at least all the way around. The pile of hair was huge.

IMG_20141203_101857 — During the haircut

He looks and feels a lot better.

Then we came back up to the room to wash off the hair clippings and the volunteer came back again. She did some of Patrick’s homework with him while I made his bed.

The team came for rounds. Patrick’s to do list before discharge is getting shorter and shorter. He looks and feels good. He is back to full feeds and off of TPN. But his rejection medication levels have been pretty unpredictable and they are trying to find the right balance of keeping the fluid out of his lungs while still keeping him hydrated. That and some training for me are about what’s left… assuming nothing else pops up, which certainly can happen.

Next, it was time for the hospital’s annual Christmas caroling. We went with the music therapist and pharmacy students and some other kids and families to sing to the other patients around us. It was fun to see it actually bringing smiles to people’s faces. Patrick didn’t much care for it, but enjoyed the wagon ride. And it meant he got to play with the Child Life specialists a little bit.

When we first arrived, we were the only family to show up. And there were news crews there to cover the event, so that meant they asked us for an interview. Mind you, I was unshowered, no makeup, wearing a bright purple t-shirt and a bright orange Santa hat Patrick had decorated for me. But hey, it’s a little way to give back. So we shared that side of me with Omaha to day.

Amazingly, I was able to get Patrick down for a nap on time. This was good as Wednesday is a school day. Thanks to a sweet hospital mom friend, I even had a yummy lunch to sneak in eating during this time. Patrick’s teacher comes a little after 2:30. He certainly could have used a longer nap. In fact, he cried big fat tears when I woke him. But once his teacher was here, he was happy to play and learn with him. And it gave me a good excuse to clean up the room so that the little table in his room was ready as a place for them to work.

We wrapped up our day with some time doing puzzles in the playroom, making our daily Christmas ornament, and video chatting with some friends back home. He’s still clumsy and weak, but didn’t need pain medicine all day. He is walking mostly on his own and since it’s been over 4 weeks, is even ok with getting up and down by himself.

When it was time to eat, Patrick told me what to make for dinner and asked to have some. That’s the first time he’s chosen to put food in his mouth in a couple of weeks, so I was thrilled.

And now, if we’re going to stick to a regular schedule, it’s time for me to get him to bed. Especially since I need to make a trip back to the Ronald McDonald House first thing in the morning.

Gotta say, though that our first day alone didn’t go off too badly. Of course, child life had activities planned for us or sent volunteers for most of the day. But I’ve learned that even when we are outpatient, we are invited to come over for all of these events. So movie night and craft times and all of the fun stuff is still available to help us pass the time.

Transplant Day 33 and back to being a kid

You’re going to love this update.

Today has been a very good day. I got back to the hospital to find Patrick just waking up. One of Patrick’s primary nurses who loves him and really advocates well for him was back on today, so I knew things were headed in a good direction. We did our usual morning routine, including a bath that he didn’t want to do because he hates getting up and coughing till it makes him sick. But we got through it and then Daddy said it was time to go to the playroom.

At first, Patrick was just as fearful of walking. But we got into the playroom and he saw a toy he wanted and he couldn’t describe.. So he got himself up off the floor and walked over to his dad to get it. Yup.. We are 4 weeks post-transplant and his abdominal strength should be coming back. Apparently, the pain from Saturday’s surgery is getting better, too.

We stayed in the playroom for 2 hours. Part of that time, Brian went back to the room to pack. When finally I could tell he was getting bored by the number of toys strewn on the floor (where they aren’t supposed to be) I grabbed his wagon and suggested we go for a walk. From time to time Patrick gets a card with cash in it. This week, there was a book fair downstairs so I suggested we go pick out a book. He was really excited about this! When he saw the giant dry erase book, he was sold. Letting him pay with his own money for the first time was priceless.

Then, we came back up to the room and it was time to leave to get Brian to the airport. Patrick got to take his new book and go sit at the nurses’ station. They told me they were also taking him downstairs for craft time.

So, after saying goodbye for a few weeks to my husband and best friend (hard, no matter what) I decided I had time to do a little something for me. I’d heard that the casserole from last night’s dinner at the Ronald McDonald House was amazing and decided to go get some. (Yup. It lived up to the description.) Then, I went upstairs to our room and put a bedrail and mattress protectors on Patrick’s bed so it will be ready when he gets to go there. And I headed back to the hospital.

Well, I got there at 3:05 and found that Patrick was back upstairs in the playroom. And they had already gotten him a volunteer and promised him painting. I asked if he would like for me to stay and he said that, no, he’d like his friend to himself. So I came back to the room and did some things on my computer while he played for a couple more hours.

All told, Patrick got to decorate a Santa hat, make a bracelet, make a jingle bell shaker, paint some pictures, and just generally play with toys. Then he came back to the room and was ready for some myself time and spent another hour playing with playdough.

The ward (church) called a new compassionate service leader on Sunday. She called tonight to see if she could bring me pot pie. After having stuffed myself on chicken cheese stuffing casserole at lunch (thinking dinner would be light) I am going to bed with a super full tummy. Also, she is crazy super nice. She has only been in the ward a little over a year and got leukemia and had to have a bone marrow transplant right after.. so she knows this hospital and life being sick and being new in the area and the whole shebang. She made pot pie so I could have comfort food. Patrick loved her visit, too.

After dinner, I got him up and we went for another walk, and then climbed up into bed. We called grandma to video chat until I could see his eyelids dipping. Then the nurse came in, gave him his meds, and he went off to sleep.

Today Patrick is off oxygen and doing well enough we dared to take the cannula off of his nose. He is sleeping lying flat in his bed with both oxygen saturation and heart rate perfectly normal. This is a huge comfort for me as I consider trying to decide when it is safe for him to go outpatient. Breathing while I’m sleeping, check.

The other great news is that after needing to go back on TPN for a few days because of the problems with his stoma, they put him on full feeds and turned off the TPN tonight.

So, all-in-all not a bad day.

Or to uncover his face for pictures of this hat.

He really warmed up. (Don’t you love this supermodel pose he came up with by himself? )

P.S. He is sleeping in this hat tonight.

Why do we fundraise through COTA?

Online fundraising is pretty common these days. It is very easy to set up a campaign. And we, as you know, are very tech minded and internet savvy. So why, in the era of FirstGiving and GoFundMe, Kickstarter and more did we decide to have our fundraising go through the Children’s Organ Transplant Association?

The answer is that this non-profit offers more than just an online place to collect donations. Here are a few reasons why we love COTA.

1. They are a non-profit. COTA is a 501(3)(c) charity. That means that donations are tax-deductible for the giver.

2. Donations can be matched. They can work with many company’s donation matching programs. If you give, it’s possible your employer will also give. COTA also matched donations themselves.

3. They help fundraise. They act as mentors in fundraising efforts. So our local volunteers have had help in planning and executing events. They have helped publish press releases. They provided the means to do cell phone and printer cartridge recycling. (Yes, we still accept those.) And miracle makers we don’t even know have put together events benefiting our family.

4. They provide other support, too. I can’t tell you how many phone calls I have had with COTA staff. They listen when we need someone to talk to. And since transplant? I can’t call the without them trying to find one more way that they can offer help.

5. They keep donations safe. One of the drawbacks of fundraising is that large sums of money suddenly hitting your bank account can count against you in terms of taxes and other benefits. Fundraising through COTA makes it so we only deposit the money into our own accounts as we need it. Also, there is some security in knowing that there isn’t a risk of a company going bankrupt and disappearing with the donations.

6. The money is earmarked for transplant. This helps us a lot in our budgeting. Anything related to transplant, be it pre-transplant medical expenses, current and future medical bills, lodging, food, transportation, etc. is all covered. 100% of the funds raised are used for transplant expenses. The dollar figure you see on Patrick’s fundraising page is how much has been raised on his behalf and how much he can claim.

7. The donations help other families, too. Now, make no mistake. Money raised in Patrick’s behalf isn’t going to be spent in other ways. This is something people ask a lot. “Wouldn’t it be better to just give you the cash so we know it went to you?” We can claim the full amount donated as we need it. However, we also like knowing that if, by some unexpected chance, Patrick didn’t need all of the money raised for his own transplant expenses, that they would go to another child. We consider these donations sacred funds and wouldn’t dream of using them in another way.

Today is Giving Tuesday. A chance to take a break from the commercialism of Black Friday and Cyber Monday and give back to the community. We know that a lot of people want to offer help and that we are far away and there isn’t a lot that can be done. But helping us raise funds for Patrick’s transplant-related expenses is something that you can do. We’ve raised a little more than 30% of our goal.

This venture is definitely not a cheap one. Prescription co-pays alone are about $200 a month. That’s not including the costs of living out of the hospital or flying Brian back and forth. And this is going to be a lifetime venture. So every little bit helps.

To make a donation, just go to http://cota.donorpages.com/PatientOnlineDonation/COTAforPatrickH/ and click on the “Donate Now” link. If you’re not tech savvy like us, donations can be mailed. Just go to http://cota.org/userfiles/CheckDonationForm.pdf to download a donation form and get instructions.

Transplant Day 32 and slow and steady

Well, today I have very little to report. It was a very quiet day. Patrick’s pain is a little better, and so his breathing is, too. He only needed oxygen for a little while after we got him really mad getting up in the morning. His nurse wanted to take the cannula (tube) off his nose tonight, but we told him to wait till after bath in the morning.

The doctors restarted feeds and started to decrease the TPN again. So far, so good. We’ll see what the chest x-ray shows in the morning. So far, though, things are moving in the right direction.

We know he’s still hurting some. It’s hard to find the balance, though, to know how much he needs medicine. He does NOT want to walk. I was trying to get him to walk around the room earlier today and he decided to just stand on one foot so I couldn’t make him take the next stop. Not sure if that’s because of pain or because of a fear of coughing or just fear in general. Brian pushed and pushed to get him up and once he forgot to be miserable, Patrick actually walked quite well to the nurse’s station. But then he tried to refuse to come back. This is one area where Daddy will be sorely missed when he goes home.

Patrick got to play with a couple of his favorite volunteers. His homebound teacher came for his “first day” of homeschool. Patrick was overtired by then because his sleep schedule is all off right now, but it went ok.

Meanwhile, I started working on trying to figure out how to do Christmas here. It feels like all of our Christmas traditions are packed away or will go on without us in Utah. We don’t really have space or time for too much here. I hesitate to decorate because I don’t know where Patrick will spend his time. But I didn’t want to do nothing all month. So today, I put together a makeshift, simplified Truth in the Tinsel countdown to Christmas. The idea is to introduce the Christmas story with a topic a day. Each day has a word, a scripture, and a craft to make an ornament. Eventually, you end up with 24 homemade ornaments. I thought this might be a fun way to work towards decorating our own little miniature Christmas tree.

Today’s word was light. We read Isaiah’s prophesy of Christ’s birth and talked about how Christ is the light of the world. Then we made a candle ornament.

It was kind of nice to have time for a little project today, even if it was accomplished because I planned it while volunteers were playing with Patrick and shopped while he and his dad were napping.

Tonight, I’m spending the night at the Ronald McDonald House. Brian wanted me to have a night away before he flies home tomorrow. Plus, it means a little extra time for the two of them together. Tomorrow, things are going to be different for all of us.