hospital stays – Page 2 – Patrick Hoopes

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.

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.

Transplant Day 30 and warranty maintenance

Patrick finally got some good sleep last night. In fact, he was well on his way to sleeping all day. At 10 a.m., he had succeeded in going back to sleep again no matter the interruption. Therefore, I was in my PJ’s with hair uncombed when the team came for rounds.

I hopped out of bed and found them reviewing the imaging from yesterday. And what they saw looked like good news. The images of the gut still looked healthy throughout. The only sign of trouble was right where the stoma came through the abdominal wall. Right before, there was some dilation that showed that there was a narrowing there.

I asked what that meant they could do.. the answer was pretty straightforward. The surgeon, Dr. Mercer, could take him to the OR and open up the stoma a little more. He said he had some time on his schedule and could take care of it today.

Then, he turned around and said, “Don’t be surprised. My OR nurses are very efficient today. They may come for him in 20 minutes.”

So I called Brian who was finishing up laundry and told him to come quick, which he did. I hurried and got dressed. He got Patrick cleaned up and dressed. And then, sure enough, they came to take Patrick to the OR. The nice thing about this plan was that there wasn’t much time to worry. But it certainly scared and frustrated Patrick. It was hard to send him off knowing how worried he was.

The procedure was quick and successful. Dr. Mercer said that as soon as he released the pressure, he felt like the bowel said “Ah! That’s better!” There was a little scar tissue causing a twist and then a little bit of a narrowing in the abdominal wall and he thinks that was all the problem that was there. So now things should work very well, even when Patrick is ready to eat solid foods.

They also did Patrick’s 3rd scope and biopsy while he was asleep and reported that the bowel looks pink and healthy.

Dr. Mercer said no worries about this. Just consider it some warranty maintenance.

According to the post-anesthesia nurse, Patrick woke up and immediately asked if everything was done. Then he went back to sleep. When she called me back, he was awake again and sad. He asked me to lay in the bed. Then he told me he didn’t want to talk. So we just layed there together. I even laid with him as we came back to the room.

Unfortnately, after we got back to the room, he started to feel worse and worse. His oxygen saturation was low so they had to turn his oxygen back on. That isn’t a huge surprise given the condition of his lungs. However, it was a surprise when he started running fevers.

It sounds like his full tummy might have made him aspirate (inhale) some bile as they were intubating. We’ve seen this a couple of times with him and it’s pretty consistent. Some fevers. Maybe some trouble with his lungs called “aspiration pneumonia.”

The good news is that they are already doing all of the possible prescribed treatments. Antibiotics. Chest x-rays. Respiratory therapy. They did an x-ray and it looks good. His lungs sound good. We were able to get him settled down enough to keep some tylenol down and that has brought the fever down a bit, too.

He got feeling good enough to sit up and play with some playdough and he is asleep now. They have even been able to turn down the oxygen some. He’s also been asking to drink water, something he hasn’t wanted for well over a week… that tells me that his tummy has felt too tight for a while now and how that it doesn’t (and his mouth is dry from the oxygen), water sounds good. Thank goodness his belly is to suction right now and he can drink all he wants.

The great news is that his stoma is working great now, too. The funny thing about raising a kid with intestinal problems is that there are so many occasions to be extremely excited about stool.

Transplant Day 29 and some gut rest

Well last night was frustrating. The nursing staff was spread thin because of the holiday and it took a lot longer than usual for them to respond to the non-critical things. From 10-11 p.m. one of Patrick’s antibiotics ended and the pump alarm rang and there was no one to shut it off. I silenced it for a while, but Patrick insisted that it was the nurse’s job and my job was just to cuddle and talk to him. How can you argue with that?

Unfortunately, the nurses were trying not to bother him while he slept, so every time Patrick woke, they’d try to come in and do vitals. Problem is, that mean they were in the room half an hour each of those times and we were awake at midnight and 5 and 5:30. (Not complaining about nursing… just stating trouble with sleep that comes with not doing well.) Then, at 6 Patrick’s nurse came to deliver the news that the resident didn’t want to come drain his gut again “unless he’s really uncomfortable.” Well – 10 minutes later, Patrick woke up crying. He said “bucket” and, before I could react, he threw up all over everything.

Yes – uncomfortable. Apparently, with nothing moving out of his gut and feeds still moving in, Patrick’s gut and belly had finally had enough.

So we got him up and changed the bed and gave him a bath and turned on some Blues Clues. And we waited for the doctors to come for rounds.

Rounds were actually kind of a relief today. They talked about different causes for this new problem and tests that could look for those problems. They aren’t thinking rejection at this point.. perhaps some inflammation or something called an ileus where the gut just temporarily stops moving or a mechanical issue with the muscle wall around Patrick’s stoma or a type of irritation called pneumatosis.

Then, Dr. Mercer came into the room to try out draining Patrick’s belly himself. When he saw how little a catheter needed to go in to immediately drain, he was actually really relieved. He said that ruled out a lot of possible problems. It also eliminated the perceived huge risk of draining. He showed Brian then and there and wrote orders that the nursing staff or parents could do that as often as needed.

They also stopped feeds, restarted TPN, put Patrick’s g-tube to suction so he wouldn’t have to throw up any more, switched as many medication as possible to their IV forms, and ordered some tests. The rest of the morning was very busy. Patrick had an x-ray of his abdomen and then later a CT scan to look specifically for pneumatosis or any other narrowings or problems. I guess we did a good job selling the idea of how fun a CT can be because Patrick had already been asking if he’d get to go in the “donut” again. We got comments from the radiology staff and nurse about how comfortable he was doing something that terrifies most other children.

Patrick and daddy in a wheelchair headed to CT

Later today, they’ll come do an ileoscopy (scope through the stoma) and biopsy again.

Hopefully, one of these tests will show us what is going on. It is possible that Patrick’s belly just needs to rest and reset after all of the trauma of last week.

Regardless, with symptoms alleviated, the rest of yesterday was a good day. Without pain, Patrick was feeling up to sitting up and playing more. (In fact, he was more than a little afraid of his bed after all the scary things that had happened there this past few days, so he was doing all he could to get me to let him be in other places.) This means that his lungs have opened up and he was able to wean off of oxygen. His lungs are still recovering and they are trying to get the fluid all the way out of them and the lungs totally reinflating. His oxygen saturation is a little bit low and he sets off alarms when he sleeps, but he quickly rebounds and no one comes running at this point.

Having family here definitely lifted his spirits, too. He and I were both worn out and frustrated and mad yesterday. It would have been a hard day had just the two of us been trying to be together. But Patrick’s family made him feel like a million bucks. Really, seeing the pride in his eyes when I came back from doing laundry (it was a big laundry day) at having his uncle all to himself was impressive. And seeing him happy and laughing as he played with his cousins was a big treat, too. This little boy needs people and fun.

Brian went with Mark’s family to the zoo in the afternoon and Patrick and I took a much needed nap and some quiet individual play time.. But then they came back and we played in the playroom and went out to a break room to eat dinner.. and then back into the room for another priesthood blessing. (Patrick asked if Mark could help daddy give him one.) Then they gave him some gifts, including a ball that was then used to play monkey in the middle. He laughed and laughed.

When they left, I let him stay up and watch some of his new Dora DVD while we finished up his care and I got ready for bed.

I’m finishing this blog post up in the morning. Patrick has slept soundly all night. X-ray snuck in at 5:30. (Patrick’s nurse is fairly mad they did because she guards to be sure they don’t wake patients who don’t need it.) Patrick was really upset about it, but then tucked up his arms under my side and went back to sleep. A little later they came to draw labs, saw his bed needed cleaned up, and the same happened.

After such a long and hard week, it is so good to see him comfortable and sleeping peacefully. Hoping that goes a long way towards a better day today.

Patrick’s days are busy right now. He starts the day with labs at 5:30 and a chest x-ray at the latest moment that the nurses will allow to get him sleep but still get the results on time for rounds. He has meds at 7 and at 9, and because he doesn’t feel well, that means running zofram for nausea first. He has 2 antibiotics each given 3 times a day with a benadryl pretreatment before. He has respiratory therapy 3 times a day. He has vitals every 6 hours. And diapers. And stoma care. And a bath. And pain management. And getting up to walk. And trying not to go stir crazy.

It’s been 4 weeks since transplant. One thing we know from this journey.. So much can change in a day, or week, or month. We really appreciate all of the ongoing support and love that you offer Patrick, near or far.

Transplant Day 28 and Thanksgiving

I didn’t get to blogging last night. Patrick has had some really good moments, some really difficult moments, and a very busy treatment schedule for the past 2 days. This is the first quiet moment I’ve had. So let me catch you up.

Two nights ago, I emptied Patrick’s ostomy bag and put him to bed. (In case you don’t know, an ostomy or stoma is a place where a surgeon has made a small piece of intestine come out of the skin. It drains into a bag. Patrick needs to have one so they can easily and safely do scopes to watch for rejection for the next year. Eventually, they’ll take it back down and reconnect him.)

Anyway.. I put Patrick to bed a little before midnight. By morning, his ostomy bag was still empty. When his nurse gave him his morning meds, he couldn’t keep them down. And as the day wore on, it seemed his discomfort was growing more and more. But we told the team and the surgeon said get him up and maybe it will wake up. If not, then call and a resident could come use a small tube to help break up and drain out any small blockage.

Well, 2 p.m. rolled around and still nothing and Patrick’s belly really hurt. We called the resident. She was really hesitant and thought that it was dangerous to put a tube into Patrick’s stoma and new bowel. So she wasn’t going to do it without permission. The fellow (who is over the residents) had been in the hall pulling up chest x-rays during the conversation, so he hadn’t heard the instructions. It took another hour and a little bit of firm insistence before she finally consented to come do the procedure.

But, once she did. Patrick felt lots better. The nursing staff decided that they would insist that this be done once every 8 hours at least. Because of that, Patrick was much more comfortable for the rest of the afternoon.

All that pain made it so Patrick didn’t feel much like getting up and moving much. Thank goodness for family, though. When Brian’s brother Mark heard that we were going to be here for Thanksgiving, he and his wife immediately started to make plans to come celebrate Thanksgiving with us. They rented a house for the weekend so they’d have a kitchen to cook in. They drove here from Denver, arriving Wednesday night. Then, the night before Thanksgiving, they went and found a grocery store, bought all the food for the meal, and went to work.

So yesterday morning, while Heidi stayed behind and cooked, Mark and his kids came to play. They threw a ball, blew bubbles, put on a mini puppet show. They brought Patrick big smiles, even though he didn’t feel very well. Then, they went to help pack up the food and Patrick took a nap. He slept through dinner, and that was really ok, since he wouldn’t have been eating anyway.

For a Thanksgiving dinner in the hospital, this meal was amazing. As I’ve said before, this hospital is abandoned on weekends and holidays. So we set up dinner on one of the long tables in the cafeteria. We all ate until we were well stuffed. The kids played in the cafeteria and we rested and talked.

Then I came upstairs so Patrick wouldn’t wake up alone. Good thing, too, as he woke up crying in pain. His nurse got him a hot pack and some pain meds, though, and with his belly a little less full it helped.

Brian came up after his family had left for the evening and with pain medicine on board, Patrick was ready for a walk. We got the nurse to bring in a cart for some portable oxygen. His walking was stiff and clumsy and guarded… But getting up and moving seemed to have helped his lungs. His oxygen saturation was much better for the rest of the evening. That, after a day of restarting respiratory therapy, seemed to make a really big difference.

It was a busy evening, though. Nursing staff is short on a holiday so the nurses were running like crazy. But still, with several antibiotics on the IV pump in the evening, the pumps just beeped and beeped. Finally, we made it to sleep at midnight. Unfortunately, vitals woke up at 5 and then labs at 5:30 and so we were both exhausted by morning. Therefore, this late post. I’ll start writing about today next and hopefully post after adding a bit more right at bedtime.