Category: LDS Church

Transplant Day 48 and some Christmas Cheer

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Transplant Day 46 and Physical Therapy

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Transplant Day 45 and Gingerbread

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Well, it’s about 6 p.m. on a very quiet Sunday evening here in Omaha. Patrick is taking a little time in the playroom and I thought I’d throw out a quick update.

It’s been a simple day. We slept in a little bit because we were told no labs. I had Patrick in the bathtub when there was a knock at the door. It was his home nurse. She hadn’t gotten a change of orders. So while she called looking for those instructions, I got Patrick back out of the bath and dressed just in case. But she got it sorted out and went on her way.

That put us a little ahead of our expected schedule for the morning. We ate breakfast and got meds and then pulled out the Dora Candyland game they have here to play while waiting for our next plans.

I decided that maybe a Sunday morning outing would be a nice change of pace today. The Mormon Trail Center has a gingerbread house display every Christmas. I’d heard about it from more than one of the nurses. So I invited any of our friends at the house willing to be up and out earlier in the day to meet us at 10:30 to go over. (I am still hiding from crowds to protect Patrick from illness with his weakened immune system.)

We don’t have many early risers in the house right now, so only our friend Wendy joined us. Her son is 18 and had a transplant a year ago. So while he slept, she came with us.

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The gingerbread houses were fun and impressive. There were simple displays from scout troops and other kids groups. There were also very elaborate displays with sculpted candy and such. It inspired us to want to set up a gingerbread house making activity here at the house.

Then, we went upstairs in the visitors center and took a brief tour. I should maybe get tired of that, but I really don’t. I see so many parallels between the sacrifices that pioneers made crossing the plains to our life right now. Separated from husband and family. Small living quarters. Nebraska weather. And hard trials. I was really glad we got to go.

And they finished off the tour with this little video about the true and first gift of Christmas, Jesus Christ. I’ve been meaning to share it with you. Now seemed like the right time. I was talking to Brian last night. He’s doing all the grunt work of Christmas this year. Mailing cards, wrapping presents. Meanwhile, I’m here with my little nativity advent tree and only serving Patrick and the other people in the house as my jobs right now. It’s a different Christmas season and teaching me a lot.

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Anyway, we came back to the house and ate lunch, put in some laundry, visited with some of the other kids for a while. Patrick was sent a 12 days of Christmas gift countdown by our church youth group and today was the first day to open a present.

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Then the elders came with the sacrament. Our usual guy was busy this week and so this was a new father-son duo that came to visit. They got a bit lost on the way. It always seems so very brief when there are no meetings around the sacrament. I miss church horribly right now. I’m realizing that I had found a way to work scripture study and prayer into our hospital routine.. But this new Ronald McDonald House routine has been harder that way. Patrick can’t sleep in because of labs and that’s when I was reading before. And with his insomnia, he is up till almost 11. You think finding time to blog is hard? Try finding time for quiet study and meditation when you have a 6 year old who is desperately stir crazy with you in every waking moment.

But I can tell today that it needs to be a priority. Sundays are kind of a day to refill spiritually and I can tell that my lamp is running on empty and there are no meetings of any kind to refill me. That falls to me these days.

There’s no dinner in the house tonight so I probably had better go up and make us some dinner here sooner or later.  But I thought that while I had a quiet moment and an internet connection, it was worth checking in. Sorry about the typos in yesterday’s blog post. I wrote from my phone and I obviously didn’t do a good job proofreading.

Transplant Day 43 and Celebrating 11 years

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Transplant Day 38 and Look Mom!

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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 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.

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 31 and a Day of Rest

It seems like Patrick turned a corner last night. I wish I could say things are all better. Today, for him, things are still hard. His fevers are gone. He hurts and hurting is making him not want to take deep breaths. Because of that, even though his lungs seem a bit healthier, he’s still requiring oxygen support when he’s awake. (Not always while he’s asleep, which confirms the idea that he’s in pain.)

Therefore, we have seized upon this Sunday as a day of rest.

Of course, it didn’t start out in a very restful note. The fire alarm went off here in the hospital this morning at 5. I wish I could say that’s a small thing, but it’s not. Strobe lights flash in all the halls. They shut all the doors. And this recorded voice repeats, “There is an emergency in the hospital” over and over again. I wish I could say this is a rare thing, but it does go off somewhat regularly. The difference today is that it didn’t stop. After about an hour, they did finally figure out how to shut the voice off. “Mostly.” But at 7 the strobes were still flashing and the doors were still closed and because that somehow affects the security doors in the pediatric units, security was there.

This was enough to get Patrick good and awake for a little bit last night. Not the end of the world.. right before the alarm he was awake needing pain medication anyway. I was really grateful for his nurse last night who, instead of offering sympathetic words, got silly and made Patrick laugh with silly antics and a pillow fight at 5:30 a.m. I learned a lot from that as I saw how much better Patrick felt laughing.

Once Patrick was feeling a bit better, I decided not to force the idea of sleep. I turned on a Blues Clues and told him I was still tired but he could watch or sleep so long as he was quiet. (Last night, because he was hurting, Patrick opted to sleep in his bed alone with me asleep in the recliner, which almost stays reclined, next to him holding his hand.) I went back to sleep and so did he.

Then, about 7 a.m. Brian appeared cuz I guess he’d been awake, too. We did an early morning shift change and I headed off to get ready for church. Since Brian flies home in a few days and it will be a while before I have the chance to attend in person again, we decided that today was a good day for it.

I had the chance to visit with some of the Ronald McDonald House staff while I was waiting for it to be time to go. One of them had been to the temple open house when they built the temple here and we had a good talk about temples and why they are important to us.

I only stayed for sacrament meeting. It was good to be able to sing hymns with a congregation. I met the bishop and the newly called compassionate service leader who went through her own big, long, scary illness and hospitalization a year ago and knew all the right questions to ask.

Then I came back to the hospital where I found that Brian had been trying to help Patrick get up and move around the room, but it hadn’t been going easy. Patrick hurt and getting up just made him need more oxygen. I found him sitting in the recliner and we played playdough together for a little bit.

Then, the men from the ward (congregation) came with the sacrament for Brian and Patrick. Today a 12-year-old deacon came along and Patrick was excited to make him play playdough, too.

After they left, Patrick was looking beyond tired.. so we decided it was time for a nap. Patrick tried to avoid it. First, he stood an extra long time leaning against my shoulder. We discovered that daddy blowing zerbets on his back made Patrick’s heart rate go down and his oxygenation go up. Then, he opted to walk to the mailbox on the playroom. But once we got there without oxygen on, he was tired and I carried him back and put him to bed.

He slept 4 hours. He is only awake now because he needed his diaper changed. But his monitors reveal that the sleep has helped him to feel better.

So it’s been a very quiet Sunday, and a much needed chance to rest. I keep reminding myself that, though much smaller than transplant, yesterday’s procedure was a surgery and it will take a few days for the pain to go away again.

People often comment or ask how it is that we stay hopeful and positive during these hard times. Patrick’s attitude helps a lot. So does the support of the staff here and all of our friends and family.

Today at church one of the hymns reminded me of another way, too, that we are getting through this. Here are the words I sang today that brought a tear to my eye and some comfort to my heart.

I believe in Christ; he stands supreme!
From him I’ll gain my fondest dream;
And while I strive through grief and pain,
His voice is heard: “Ye shall obtain.”
I believe in Christ; so come what may,
With him I’ll stand in that great day
When on this earth he comes again
To rule among the sons of men.

I’ve spent the evening trying to find a good Christmas Advent for Patrick. In years past, I’ve done an activity a day calendar with baking and outings. But many of my activities don’t fit right now and I don’t feel we can plan ahead enough. So I’m looking instead at a symbol of Christ/craft a day idea like The Truth in the Tinsel.  Just gotta figure out if I have the resources to pull it off here.

Because today I was reminded that it is Christ’s atonement that carries us through this. He took upon Him all our pains, both physical and emotional.. not just the pain of sin, but our grief and other sorrows, too. His resurrection means Patrick will one day have a perfect body, free of all this illness and pain. Better than a transplant. Much better. He is the Prince of Peace.

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
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.

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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.

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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.

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Transplant Day 26 and Atelectasis

Atelectasis: the collapse of part or (much less commonly) all of the lung.

Last night was one of the hardest we’ve had here. Patrick’s fever reached 104. And he was really struggling to breathe. Anytime he’d lay down, his oxygen saturation dropped. Anytime he sat up, he coughed violently. Finally, at 1 a.m. his nurse put him on oxygen and as long as we slept with the bed up and me helping to support him sitting up as he slept, he was able to rest.

At 5:45 a.m. radiology came to take a chest x-ray. It showed that Patrick’s pleural effusion had about doubled in size. It also showed that both lungs had “atelectasis.” In other words, his lungs were partially collapsed because of pressure.

When the team came around, they said that he needed them to help get the fluid out. If the fluid was from a pneumonia or infection, they could culture it and give the right antibiotics. If not, then they could from there start looking for other explanations for his fevers. The effusion itself can cause fever.

But he’d need sedation and that meant he’d need to have his feeds shut off for 6 hours. And that meant the earliest time would be evening.

Getting him up was rough, but once he was up, he seemed to do better. To help with the lung collapse, we played games that made him take deep breaths. We used birthday blowers to knock down towers of cups. We blew bubbles. We played with whistles. This kept him doing as good as possible, but as the day wore on, he needed more and more oxygen. I just tried to keep him happy sitting up, playing games, coloring.

His new homebound school teacher Mr. Chambers. came this afternoon. Patrick was dead tired and had figured out that sign language was easier than talking. So, this isn’t exactly how I figured Patrick’s first day of school in Omaha would look. But – it was the first step and that’s what matters. We’ll have an IEP written by the end of the week and dive in with 3 one-hour school sessions a week. Mr Chambers is very nice and very compassionate, too.

Also, Home Health came to deliver Patrick’s enteral feeding pump, get signatures, and give us any training we needed. We’ve used this pump before, but it’s been a long time and we weren’t using it all the time before.. So I figured a refresher course was in order. This pump is tiny and lightweight and Patrick will have no trouble at all moving and playing while wearing it in a backpack. It’s purpose is to do a drip feed of formula into his stomach all day long until he is able to eat enough calories on his own.

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At this point in my blogging, from yesterday got interrupted. It is now Wednesday morning and I’m going to fill you in on the rest of what happened last night.

About 4 p.m. yesterday, we heard from Patrick’s nurse than Interventional Radiology’s schedule was full and they were putting Patrick onto his schedule for 10:30 a.m. today. Thank goodness for our awesome nurse Debb who was worried about Patrick’s continual decline. She made a lot of noise and I think is part of why things are better right now instead of just starting right now.

A little later in the afternoon, the nurse practitioner came to check in on Patrick before going home and tell us the plan to wait till morning. We said, “What if things keep getting worse overnight?” She answered that if there were an acute emergency, they’d take him down sooner. So Brian asked what constituted an acute emergency. The answer: Needing 2-3 liters of oxygen. So we pointed out that he was already on 2 liters of oxygen and desatting when he tried to sleep. She countered, “but at least he’s resting comfortably.” And I said, “No.. he’s so uncomfortable he’s been lying there trying to sleep and is resting because he’s exhausted from the effort.” She left the room rather quickly at that point. Half an hour she came back to say that they were working on setting up the procedure as soon as possible.

That was at 6 p.m. They took him down at 8 p.m. Because things were happening quickly, we got to give the same general history a few times to a few different residents. But eventually, the anesthesiologist came over to explain that, with his lungs already stressed, they thought it safest to intubate him for the procedure.

And then we kissed him goodbye and they said it was a quick procedure and we’d see him soon.

The procedure actually was pretty quick. With general anesthesia, an hour and a half is really fast… and that’s about how long it took for the doctor who performed the procedure to come tell us that things had gone well. They removed about 250 cc’s (or a quarter of a liter) of milky white fluid from the sac around his lung. That doesn’t sound like a ton, until you imagine Patrick’s tiny body carrying around 8 ounces of liquid in his lung. Then it sounds like a lot. They let us see the x-rays last night. His right lung had been entirely collapsed.

She said they’d call us back soon. But then we just waited. And waited. And we finished our show. And I started a blog. And then a chaplain came looking for someone to visit. And it before we knew it an hour had passed.

(A side story about the chaplain. After visiting for a while, she asked if she could pray with us. She said the prayer and closed “In Jesus’ name.” Then after saying “Amen” she blushed and said, “I didn’t think to ask if you were Mormon.” We said that yes, we are. Then she tried to apologize for praying in Jesus’ name. So we had a minute to stop and explain that we do, in fact believe in Christ and pray in His name and that her prayer perfectly fit our method of praying… And then that’s when the doctor came.)

Back to the story – the interventional radiologist came back to tell us that they weren’t having success taking out Patrick’s breathing tube. His lungs were too weak and needed extra time to recover before they’d work properly. He was making significant progress and she was sure he’d be ok before long. But, to be safe and give him time to recover,  she told us they’d keep him intubated till morning.

We were joined by a nurse manager who explained that in the hurry to get Patrick into the ICU, they’d put him into an adult room but that they were moving him to a pediatric room in under an hour and that they’d like us to wait till then to come back. We started to say, “OK. That gives us time to go clean up and move his things,” when we looked up to see one of the techs from the pediatric floor coming with a cart of things from Patrick’s room.

This kind of the last straw.. The idea that they couldn’t even wait for us to have time to get an update from his doctors before they were packing up and moving out his things. While we cleaned up, there was someone from housekeeping waiting because he’d been called to come clean the room and hospital policy requires that they respond within 5 minutes of the page. We don’t mind so much that they tried to help clean up and move the things… as the fact that he wasn’t even settled in the PICU before they had done it.

On our way out the door with the mountain of things that Patrick has accumulated during our stay, the nurse manager from the PICU came to find us to tell us that they had extubated Patrick. Ok, THIS was the straw that broke the camel’s back. Patrick was awake and we were downstairs cleaning his room and unable to go be by his side. She might have said something about “this is just how things go.” And we might have given her an earful about compassion. We are a little less angry this morning. But it’s going to be hard to bring ourselves to try to make Patrick’s next room feel homey again because it caused such a problem when he needed to move.

Anyway – with the fluid off of his lungs Patrick has been doing much better. He his heart rate is down, meaning his pain is going away. He is weaning off of oxygen. He is catching up on his very much needed sleep.  His fevers are gone. His lungs are a little bit crackly, but that will probably get better once he wakes up and starts moving and breathing again.

They are still waiting for lab results about the fluid that was drained. However, right now the working theory is that he had developed a chylothorax. “A chylothorax is a type of pleural effusion. It results from lymphatic fluid (chyle) accumulating in the pleural cavity due to either disruption or obstruction of the thoracic duct.”

I asked the team to teach me this morning what it means. What it means is this… Patrick’s transplant required cutting his lymphatic system. While it heals, it might become “leaky.” When they switched him to Elecare instead of Vivonex formula, they changed the type of fatty acid he was getting. And those fatty acids go through the lymphatic system and if the system is leaking, the fats can get trapped in places like the lungs.

Most transplant kids go through this. Patrick just got it worse than others because they switched his formula over so early.

They’ll go back to Vivonex formula. They will restart feeds slowly. They’ll watch closely to see if the problem comes back. And we’ll go from there.

It means more time in the hospital for him. But, hopefully before long they’ll get him back out of the PICU and onto the pediatric floor.