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.
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
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.
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 10 and the Sabbath Day

Overall, today was another peaceful day. I’ll admit that I think Brian and I are beginning to feel a bit slothful. But I think we are on the road to that changing (in a good way) soon.

Today’s milestones:
1) We asked the doctors if it was time to remove the IV in Patrick’s neck. The answer was an emphatic, “yes!” We didn’t find a good time till evening, but Patrick is much more comfortable.

2) After tolerating clamping and tastes of food yesterday, they started feeding formula into Patrick’s stomach through his g-tube. The rate is only 5 mL/hour. However, that is the most we had ever succeeded in feeding Patrick before and it’s the starting point now. It’s only been running for an hour, so we’ll see how it goes. But so far, so good.

3) This morning when Brian asked Patrick if he wanted to get up to walk, it made him cry. However, at 10, after some pain meds, he got up and walked to t

he scale to be weighed. We pointed out the playroom two doors down the hall and offered to bring a chair he could stop to rest in on the way to look inside.  Not only did he make it there, but he decided to stay to play. 2 hours later he was looking tired so I coaxed him back to the room.


Patrick got into the playroom, sat down in his chair and asked what he could play with.
Patrick got into the playroom, sat down in his chair and asked what he could play with.
He loves playing house, so the kitchen, complete with baby, kept him busy for an hour.
He loves playing house, so the kitchen, complete with baby, kept him busy for an hour.

4) Given the success in the playroom and his love of crafts, I cleared off and set up a craft table in his room. He’s been there drawing for an hour and a half.

Breathing treatment while sitting at his craft table.
Breathing treatment while sitting at his craft table.


5) Dad and I changed Patrick’s ostomy bag without help. The nurses were busy helping another kid having a much worse day when we discovered the leak. So we just dived in. It’s kind of like riding a bike. You don’t forget. Just have to learn how to work with new supplies and anatomy.

6) We got to take the sacrament. This is so important, to have a time each week to remember Christ and renew out commitment to Him.  In turn, He promises that His Spirit will be with us, something we especially need right now.

Last week, things were too crazy and we didn’t get in touch with the local congregation on time. But this week, they knew about us. Two men from the ward came for a visit and to administer the sacrament. One of them was the anesthesia resident on Patrick’s case the night of his transplant. Patrick was delighted to see him again.

We also had a visit from the Relief Society (women’s organization) and Primary (children’s sunday school) presidents. They scheduled in advance, but I fell asleep helping Patrick nap and they ended up visiting with Brian alone. That was kind of a bummer. I looked forward to meeting them. I hope they come back. But they did bring a sweet little card with the primary kid’s fingerprints and names and some curriculum materials.

This will help, too. I really need to get my game together and plan some home-sunday-school for us. Patrick’s not going to be allowed to go to church for a long time and that teaching is too important to miss.. For all of us.

Anyway – Sundays slow down even in the hospital, so I thought I’d blog early. We could use the rest. Mondays are not quiet. Therapists, social workers and a whole slew of other people will be back to work tomorrow.