Author: geekino

2014 Year in Review

Sometimes I’m a resilient, flexible hospital mom who is great at making hospital stays homey and fun. Other times, I struggle more, thinking of what we’re missing and feeling stretched beyond my limits making up the difference. Unfortunately, I’ve let myself fall into that the past couple of days. When Patrick didn’t nap on New Years’ Eve and I knew there was no way any of us was making it till midnight, I let it get to me. The limited staff, limited entertainment, limited food choices hospital environment just fed that feeling. And so sorry, I didn’t blog.

But today, I’m resolving to do better. And so I thought I’d pick up a previous New Year’s tradition. The 2014 year in review. (Counting blessings is a good way to fend off bad feelings.) So let’s look back at what 2014 meant for our family.

January – Patrick was in preschool. We were diving in trying to make a plan to solve the struggles he was having there. We started seeing a psychologist and had a meeting with the school staff to come up with a behavior plan.  I started to volunteer almost weekly in the classroom, which I really enjoyed as it was a chance for me to use all of my talents and training in the same place and get to share in and understand Patrick’s days. I also made some very good friends with the school staff that year.

February – Patrick caught a cold and ran a high fever that landed him in the hospital for several days. But after that he managed to stay healthy. Sometime between January and February one side of Patrick’s central line clotted and the transplant team opted not to replace it. We celebrated the 5th anniversary of day we were sealed as a forever family in the temple by going out to dinner at Brick Oven Pizza buffet, an odd choice for a kid who can’t eat cheese on his pizza, but Patrick was going through a breadstick phase and so we all enjoyed the meal. The we snuck over to walk the Jordan River temple grounds, the first time health and schedules allowed us to do so on our family forever day.

March – We started working with Palliative Care at Primary Children’s somewhere early in this year. It’s a team that specialized in keeping patients with chronic or terminal conditions comfortable and helping caregivers to plan ahead and then be able to make difficult choices as medical care gets more complex. One of their top priorities: get Patrick a wish. So, in March we started working with Make-a-Wish. We visited the Utah Headquarters and Patrick got to use his special key to enter the wishing room and send his key to the wishing wizard. Patrick wished to go to DisneyWorld. We made wishes, too. Several grandparents wished he’d receive his transplant. In the back of my mind I thought, “Yeah, but that may not happen in time.” My wish was that he get all he hoped out of life.

April – This spring, my baby sister decided to get married. And she asked if she could hold the wedding in our back yard. So most of April was spent whipping the yard into shape. We have never planted so many flowers, laid down so much mulch, fertilized so often. Brian had a busy month of work. Their development team from the Ukraine came to visit for a week. And then, not much later, he left to attend a conference in San Diego. I got a flyer about mommy and me classes at the YMCA and Patrick and I started attending. We were often the only family there, besides the teacher, but we really enjoyed the time together and made some very dear friends. We also decided that wedding was the perfect excuse to remodel our cramped, outdated, and slightly rotting kitchen. On Easter weekend, the kitchen was gutted.

May –   We turned the basement wet bar into a makeshift kitchen. I learned tricks with a rice maker and a crock pot and a microwave and a grill that I’d never learned before. Between the yard and the kitchen, we made so many trips to Home Depot that Google’s cell phone tracking on my phone decided I must work there. Patrick had to spend some time out of school sick and so we also spent a lot of time snuggling on the beanbag chair in the basement. At the end of May, Brian went to New York to attend a “hack day.” In other words, a programming competition of sorts.

June – Patrick graduated from preschool. Our kitchen was finished. The wedding came out better than I’d dreamed and we welcomed Tedd into the family. Patrick immediately fell in love with him. I’d taken such good care of my garden that I harvested lettuce and spinach successfully for the first time. I started summer Mommy School, a weekly home school curriculum. We also started attending “lunch park” at the elementary school next door with some encouragement from our friends at the YMCA. Patrick was allergic to most of the food served there, but the chance to go sit on the lawn and eat with the other kids in the neighborhood, to let him make some friends. That was priceless.

July – Brian bought a book of Utah hiking trails and we started spending as many weekends as possible hiking as a family. In the hard stretches, this meant Brian carrying Patrick on his shoulders while I huffed and puffed my overweight asthmatic self behind them. But it was wonderful to be out in the mountains together.  Patrick and I also frequented libraries and parks. I got free museum passes and we visited all the museums in Salt Lake City at least once.  We full-filled a lifelong wish for Patrick and bought him a ride on car that we spent the rest of the year following him around in. He also mastered riding a tricycle.

August – I talked to Patrick’s transplant team about scheduling his annual checkup since it would be a year since our last visit in September. Patrick’s clotted line had developed a hole and needed repaired so they decided it would be best to replace the line at this visit. Not wanting to interfere with school, I asked them to schedule us early and we headed out to Nebraska a couple of weeks later. They were able to replace Patrick’s line without problems. We opted to turn the trip into a family vacation and drove to Nauvoo, Illinois, a very important historic site for members of the Church of Jesus Christ of Latter-Day Saints. (The site of a very large early Mormon city.. the last they lived in before mobs forced them to move west to Utah.) I crossed an item off my bucket list. Patrick weathered well a nice long roadtrip across Iowa with the company of his imaginary friends, Daniel Tiger and Prince Wednesday.

The rest of August was a crazy busy. Brian spent a week in Georgia learning how to create android apps (and ziplining). Meanwhile, I made a mad scramble to get everything pulled together for Patrick to be ready to start school.

September – Patrick started kindergarten. Thanks to years of preschool and the extra cramming of summer mommy school, he started at level with his peers. He was blessed with amazing school staff who adapted their teaching to help him continue to progress. They also worked to teach his classmates to be accepting of him and, one step further, Patrick made several friends in his class. We started the month by taking Patrick camping for the first time, in a cabin. Unfortunately, a g-tube leak in the middle of the night led to an infection that landed him in the hospital and he had to miss the second week of school.  Patrick also had testing that confirmed all his same allergies. He started attending group therapy to work on social skills. And he became the proud owner of an adaptive stroller/wheelchair.

In mid-September, Make-a-Wish threw Patrick a surprise party to let him know his wish was finally being granted. They invited all of his friends and family and hired an ice cream truck. We left on our wish trip at the end of September.We stayed at Give Kids the World. They gave us tickets to Universal Studios and SeaWorld as well as DisneyWorld. We played from the moment we woke up till the moment we fell asleep. It was magical.

October – Because of district budget, Patrick got a new teacher at school. She was also amazing, too. To help the transition, and because it’s my dream job anyway, I got to start volunteering in the classroom at school. I was invited to attend a research planning conference in Washington DC in mid-october as a parent advocate to talk about how research could help solve the problem of lost central line access. It was the first I’ve left Patrick overnight (except when he was in the hospital.) It was strange but good to get out and be myself and a grown up for a few days. We attended some early halloween parties and I helped throw a halloween party in Patrick’s class.And then, on the 30th of October, we got a call that they had found a donor for Patrick. He received his transplant on his birthday, October 31st.

November – November was devoted to recovery. Patrick flew through the usual post-transplant obstacles. He made it out of the PICU and off of IV feeding in record time. However, right before Thanksgiving, that early progress backfired as his lymphatic system was leaky and he got a type of fat leaking around his lungs. He had to have an emergency chest tube as his lungs were collapsing. He was doing better until his stoma healed too tightly and had to be revised. But, with a change in formula and a quick revision surgery, he sailed through recovery again.

December – Brian had to go back to Utah to work and he spent the month trying to catch up work and to get Christmas ready. Meanwhile, Patrick was discharged from the hospital on December 8th. We moved into the Ronald McDonald House where we enjoyed a Christmas season full of gifts and cards from home and watching the generosity of others but without the bustle of other Christmas preparations. We learned a new medical care routine. We tried adjusting to the side effects of Patrick’s new medication. We made Christmas crafts with friends. Brian and I celebrated our 11th anniversary apart. But, a week later he came back and we celebrated together. We enjoyed a different but amazing Christmas where we were showered with love by friends and strangers.

And then, right at the end of December, Patrick’s stoma prolapsed and landed him back in the hospital. Offered the chance to take it down, we did. And therefore, we spent New Years’ Eve this year in the hospital. Patrick and I passed out in exhaustion right around 11 p.m. Brian waited up and rang in the new year.

 

Transplant Day 62 and recovery is hard

I didn’t update yesterday because hands were full and because there wasn’t too much to say. The first 2 or 3 days after any intestinal surgery are kind of miserable. Bellies hurt when you mess with them. So this time around, Patrick’s nurses have been pretty good about staying on top of pain medicine. His pain has been better with that help. The morphine makes him itchy and sleepy. The other medicine, called Roxy, seems to work very well and when it’s in his system he rests. But it’s not IV so you have to hope his belly can handle it when you give it. Mostly, he just slept yesterday.

In order to reduce infection, they didn’t entirely close Patrick’s incision from his stoma. The muscle wall is stitched closed, but the skin layer is “packed.” That means it’s stuffed with sterile saline soaked gauze and has a gauze over the top. The gauze has to be changed twice a day. Patrick pulls his shirt up over their head so he doesn’t see while they do this. The is definitely the more painful route. But it has proved better healing overall.

Brian held him most of the morning yesterday. Then he moved to the bed and I snuggled him all afternoon while Brian worked. I caught up a bit on my missed episodes in Hulu. And i started listening to an ebook with my new bluetooth headphones. (Love that my Christmas presents are making this hospital stay feel a little more comfortable. With my new backpack and winter clothes I feel much less like a vagrant wandering through the hospital.)

Patrick woke up feeling a bit better and played on the bed for most of the evening. It took till 11 for him to finally fall asleep again.

Today hasn’t been as comfortable. It takes days for the bowel to wake after surgery. Especially with pain medicines in the system. So, without anywhere else to go, his belly juices started to back up and he started throwing up this morning. They finally put his g-tube to suction this morning and he seems to be feeling much better now.

The good news is that his gut is gurgling from time to time and so far it seems like his body is on the road to healing well. It’s just hard for the first few days.

Hopefully we can keep the status quo today. Maybe even get Patrick back to sleep as being tired and being on steroids really does make him not feel like himself. I’m going to be an optimist and post this update now hoping that there won’t be any more big news today.

Tomorrow is a new day and a new year.

 

Transplant Day 60 and A Farewell to Louie

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Transplant Day 56 and Christmas Day

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Transplant Day 55 and Christmas Eve

Oh what a difference a good night’s sleep makes. Patrick slept 10 hours last night. Which means I got a good 8 hours with only my routine fill-the-feeding-bag interruptions. We all felt so much better.

We’d have slept longer, but today was lab day. That’s ok. We needed to get up and get moving to fit in all we hoped to do.

One of our favorite Christmas traditions since before we had kids is to visit the zoo on Christmas Eve. People don’t think of the zoo on this day. They have other things to do. Therefore, it’s quiet and uncrowded. You can take all the time you want. Animals behave differently when it’s a little cold, too.. so you get to see a different side of the exhibits in many cases.

And guess what? Omaha is home to one of the world’s best zoos: the Henry Doorly Zoo. And so of course, as soon as we finished the morning meds and formula mixing (complete with me forgetting to vent my bottle after shaking it so the baking soda made it explode all over the kitchen) we headed off the zoo.

Well, with a stop at Taco Bell for breakfast. Patrick willingly took bites of an entire hash brown this morning. That is a HUGE deal.

Anyway – we got to the zoo and discovered it was bitter cold. Thank goodness this zoo was also designed by people who live here in Nebraska where the humidity makes all weather feel extreme. Most of the exhibits are indoors. So we hurried into the Lied Jungle where we warmed up in a rainforest climate. Patrick had a great time running around here and elsewhere in the zoo.. but he would get tired and try to get us to carry him and then we were grateful for his stroller/wheelchair. He’s still got a ways to go recovering.

We had a lot of fun this morning. There are lots of babies at the zoo right now and we got to get up close views of several of them. Patrick and Brian had a great time playing with one of the gorillas. We saw an extremely rare white lion cub. And then, we were tired. So we headed out… but not before acting on the idea to turn one of the very generous cash gifts we received this week into a membership to the zoo so Patrick can come back as often as he wants while we are here. The zoo in off-peak hours is an approved immune-suppressed activity.

Anyway – after the zoo we came back for lunch and some quiet time in the room. Then Brian and Patrick started some laundry while I went to the store for a few last-minute things.  (Including stocking stuffers. I opted not to get stockings after some filled ones showed up in a package from DDM. But then Patrick got another stocking from a friend that he was allowed to have early. He told me yesterday Santa was going to fill it back up again… On a sidenote, I’m glad Patrick knows now what stockings are for as the first few times he saw them, he asked if he could wear them.) Then, Brian took Patrick off for a walk to let me wrap the last couple of presents in the room.

Dinner tonight was catered pasta. An amazing family took the time off this evening to arrange that on a night that Ronald McDonald House doesn’t always see people willing to give up the time to provide us a meal.

We spent the evening working on crafts with the rest of the house. Wendy and Kate went all-out with clay ornaments and ice-cream-cone Christmas trees tonight. It was a lot of fun to see everyone’s families arriving tonight to spend the holiday with them. The mood of the house was pretty light and happy today.

Patrick, for the first time I can remember, is genuinely excited for Santa to come. He just kept showing me that only the white ring was left on his advent chain. And then he’d skip and run down the halls.

We followed some other traditions tonight: opened Christmas presents. He was so excited by the minion pajamas Grandma sent that he decided to go into the bathroom and dress himself. (We asked him why in the bathroom. He said “A dunno” (a common phrase right now) and away he went. Then he stayed and drew on the mirror with the dry erase markers I use to chart fluids there for another 15 minutes.

We opened another traditional package – a Christmas book that we share with his birth parents. This year I picked “How the Grinch Stole Christmas” which seemed a bit over his head, but I thought appropriate for the year.

Except the no presents thing. Patrick had a little trouble setting down to sleep at first, but when he was sleep he was out cold. So Brian got out the presents that were hidden under the bed. This room is overflowing with presents from the hospital, from family, from friends, from co-workers. And I know there are more outside of this room, too.

And so, that was our Christmas eve. Different. Simpler. Uncluttered. Very few last-minute preparations. No hours spent on a fancy meal. A later bedtime than I’d usually allow. And lots of new friends.

Thanks to the kindness and generosity of others – this year is different, but not nearly as hard as I thought it would be as I laid awake in the hospital worrying about it a month ago.

Right now, my biggest worries are where we are going to put all these gifts once they are opened.. and how to convince Patrick to take a bath and put on clean pajamas (yes, that’s a short gut Christmas tradition) before diving into the pile of presents that are in the room he’s waking up in.

Transplant days 53-54, insomnia, and Christmas carols

Photo Brian took while we were singing Christmas carols. Notice that when Patrick is tired he can't stop moving, hence all the pictures are motion blurred from this day.
Photo Brian took while we were singing Christmas carols. Notice that when Patrick is tired he can’t stop moving, hence all the pictures are motion blurred from this day.

Last night was a tough mix for us. Patrick slept the best he has in a week. Brian and I did not. As I put Patrick down, I noticed that there was some blood in his ostomy bag. An intestinal bleed could mean scary things for him.. But we also knew that it was Sunday night and not the most efficient time in the hospital. So we decided to wait and watch. And within an hour and a half the bleeding had stopped.

But for me, that meant setting the alarm clock every 2 hours during the night to make sure it didn’t come back. If that weren’t enough of a loss of sleep, at 4 a.m. Brian got up to go to the bathroom. Patrick woke up and insisted someone needed to lay with him. As much as I love the sweet little boy cuddles, Patrick hogs the bed.

We did finally all get to sleep, but unfortunately, Patrick had labs due this morning so when the alarm went off, I could only snooze it a couple of times before having to wake us all up.

After labs, we left Brian in the room and Patrick and I went downstairs to get him his meds and make his formula. The formula especially is quite a production to make. This morning, though, more than usual. While I was still working on it, the front doorbell of the house rang. I was the only one downstairs, so when it rang a couple more times, I went to answer. Turns out the girl from the office had locked herself out with a couple of people bringing by donations.

Well, Patrick sometimes bebops over and lets people in if they wait long enough. So he went and let them in. It turned out to be a family from a montessori school coming by to drop off some donations. They were waiting for the rest of the class, though, so they came in to wait. Then the bell rang again and this time it was people coming to put that night’s dinner into crockpots.

So here I am, in the kitchen trying to mix up Patrick’s 2.5 gallons of crazy complicated formula with people buzzing all around me making dinner. (And me telling them where to find everything.) And I look up and notice that there’s a little boy Patrick’s age that came over with the Montessori group looking bored but trying to be good. So I grabbed Patrick and went over and introduced him and got them a game to play together.

Eventually, the rest of the Montessori class arrived and they took some pictures together (and with Patrick.) And then my phone rang and it was the transplant team returning my call. And when I came back, Patrick had somehow gotten them to give him one of the gift bags that they’d brought along. As it happens, it was filled with Sesame Street themed things that we now find invaluable.. an Elmo bread crust cutter-offer and a couple of dry erase number and shape writing workbooks. (These happen to be the two fine motor practice things that i didn’t have in dry erase form.)

P.S. the doctors said that the apparent blood in the output was likely an anomaly and not to worry about it unless it came back.

We came back to the room to find Brian on a work call so I made a hurried effort to get Patrick his mommy-school readers printed for the week so we could get out of the way. We went downstairs and spent an hour doing mommy school. I could tell Patrick was tired then. He was happiest just snuggled up doing educational games on my computer.

And as the day wore on, he got more and more tired.

At dinner, we got to eat the chili that had smelled so amazing in the house all day. Then we tried going for a drive to look at Christmas lights. But I got us lost. And Patrick fell asleep. It was kind of a bust.

— picking up this post a couple of days later—

Patrick falling asleep wasn’t the greatest of things for him. He was still exhausted enough to be totally irrational. When he’s tired, the steroids kind of take over and all rational thought shuts off. We were all already tired, but nothing we could do would convince him to sleep. Brian and I went the rounds with him until 2 a.m. when Brian had him downstairs in time out for screaming in the middle of the night. I decided we needed to just find a way for the grown-ups to sleep so I drew up morning meds so we wouldn’t have to go out of the room for them. And then suggested we just turn on the TV for him.

Well, when Patrick saw the room, he decided he was ready to lay down again and went to sleep without much more fight. We slept till a little after 9 when giving morning meds was enough to wake Patrick.

It was kind of a rough morning. I don’t do well when I’m tired. I cry a lot.

But once we got past the morning, we were able to lay down and rest a little and that helped us reset. (Not sleep… just rest. We received several dozen.. maybe even 100.. homemade Christmas cards this week from a middle school, a primary, and Brian’s work so we sat down and read all of those.)

I called the team back one more time because Patrick’s output had been black looking during the night. They came back again and said his labs looked good and he didn’t seem to be feeling bad and that maybe it was the food he was eating. As in, the dyes in the food he was eating.. (That night instead of letting him have a cup of soup at dinner, I served him ham instead of soup. Sure enough, no funny colors.)

After dinner, though, we had something I’ve been looking forward to ever since I started playing the piano here. Our Christmas sing-along.  I spent the quiet moments in the day typing up and printing lyrics to several Christmas songs. We gathered up those of us in the house who’ll get together to do things like this. Plus, the sister missionaries came over. They had offered to come visit and that happened to be the only day that they could come.. and the best day for us to do the sing-along. I figured more voices could only help.

It was a lot of fun to gather around the piano and sing. Everyone was a great sport. We sang everything on my list, and then when we needed to fill some time before our next activity, we took requests. I hope everyone got to sing or hear their favorite.

Then everyone visited for a while and then went upstairs to work on a craft that one of the House employees had put together for us. Patrick and I really kind of enjoyed that while Brian drew up meds.

And then, Patrick laid down in bed and was asleep in about 10 minutes. I think I wasn’t far behind. Looking like we are going to need to explore a new phase in Patrick’s life. Giving up naps.

It is amazing to see how much this has made him grow up. Have I mentioned he also weaned himself from pacifiers? After 6 years and not knowing how he’d ever quit them… the hospital experience was enough to just make him not like them. I offered them back a few days after we got to the Ronald McDonald House. He tried them but didn’t like them. So I sat down and explained that kids grow up and then they are big kids and grownups and don’t like paci’s anymore. He thought about it and then said, “Me too, mom.” He was done. I told him that as soon as I get a chance, I’ll remove the pacifiers from his wubbanub friends and he’s great with that idea.

And that has nothing to do with anything except that I hadn’t told you. So that’s a summary of the hardest 2 days of the week. Next post, Christmas Eve.

 

Transplant Day 52 and I’m So Glad When Daddy Comes Home

I apologize for the long lapse in posts. It’s all for very, very good reason. Friday, Brian came back into town. And we have kept ourselves busy all weekend with family time.

I can’t put into words how good it is to have our family all back together. Even if we are all in a pretty small room together. Getting in the car to drive to the airport to pick up my husband and best friend made me more than a little emotional. It’s only been 2 weeks, but it was a long 2 weeks for all of us.

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Friday night’s dinner group went all out with a full Christmas dinner, decorations, bingo and prizes. It was not a bad welcome home party. Patrick had a hard time sleeping with the excitement of Daddy with him in he Ronald McDonald House the first time. (He doesn’t know Brian was here while he was in the hospital, so he kept trying to give Daddy the tour.) And it was also the first day with a change in Patrick’s feed schedule so I botched the feeding pump programming and schedule so it alarmed a few times during the night and none of us got a great night’s sleep.

Yesterday, we got up and Brian dived right in helping with Patrick’s medications. We’re used to a lot of medications and a lot of care but there are a lot of little intricacies that it takes time to get used to. Still, we got through all of it so much faster with extra hands working on it.

That was great, as we wanted to go to the store and Patrick is safest if we shop in the mornings while stores are uncrowded. We went to Target and picked up a few things we needed. Then, we got in the car to go. Only, it wouldn’t start because we’d accidentally left the lights on and the battery was dead.

So, deciding that we needed nice backup plan for me when I’m alone anyway, Brian went into the store and bought a car battery jumpstarter. We got the car started and then went for a nice long drive to charge the battery.
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When we got back, we grabbed some lunch. Patrick has surprised us these last few days. He has gone from casually grazing on food to eating voraciously. Ok, well.. almost eating. He still spits out much more food than he swallows. Except soup. He’ll eat a cup of soup pretty easily. He is always asking if he can eat and asking for more at the end of a meal. I’m kind of excited to get him started in feeding therapy and see if we can get him the skills he needs to swallow his food. Because he sure does enjoy it right now.

Afternoon nap was much harder work than it should have been. Patrick is always tired but having a hard time sleeping here. When he did make it to sleep, though, he slept the next 2 hours.

We ended up waking him because we needed to get him ready for the evening’s plans.

Last week, a little before our anniversary, I talked to a friend from church and asked her if she’d consider making arrangements for someone to babysit Patrick here at the house so Brian and I could go on a date. She volunteered. I asked her if she could suggest any restaurants. She ended up going above and beyond. Not only did she give me the names of a few places, she e-mailed the nicest steakhouse in town and asked them if they had any coupons that might make them affordable.
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Their reply was one of those humblingly generous things that we are having a hard time getting used to. Hearing our story, 801 Chophouse offered to give us a $100 gift card that would cover the cost of our entrees. I’ve eaten at a lot of very nice restaurants. This one definitely had the high-end feel down, though. I felt a bit young and naive as the waiter went through the menu options.
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The meal was delicious, though. New York Strip in a bone marrow butter bath, aged cheddar hash brown potatoes, lobster macaroni and cheese, and some of the yummiest green beans I’ve ever seen with bacon that was as impressive as the steak.
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They gave us extra special treatment because we were there celebrating an anniversary. The menus even had “Happy Anniversary” printed at the top.

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And the amazingly decadent chocolate souffle with chocolate, strawberry, and vanilla cream sauces on the side.. well they gave that to us as an anniversary gift.
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After dinner, Brian and I went for a walk around the area known as “Old Market.” There were Christmas lights lining a sort of park/waterway with bridges and pathways. A perfect atmosphere, if more than a little bit cold.

When we got back to the house, we found Patrick happily dining on ham and mashed potatoes. We said goodbye to my friend and her friend who’d come to help and then sat down to do crafts.

Today’s been a mostly quiet Sabbath. I got to go to church while Brian and Patrick stayed back at the house and played and did some work. Once I got back, we went back to the Mormon Trail Center to see the gingerbread houses together. Patrick was calmer this time. (Medication right? Previous experience visiting?) Anyway – this made it much easier to admire the gingerbread houses this time around. And when we got upstairs, he headed right for his favorite kid-friendly activities like dress ups.
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Patrick is eating up daddy time. I kind of feel bad because that’s about all Brian has had a chance to do. They cuddle together and watch TV or play on their cell phones. Meanwhile, I got to play the piano and make frosting for gingerbread houses.

Patrick didn’t last long at that activity tonight, but he had fun doing it and I’m glad that Wendy went to the trouble to get all the ingredients and put things together. I think everyone is enjoying it.

We’re just about to eat dinner. Last night’s dinner group saw me preparing leftovers from a turkey carcass to be turned into soup.. So they made homemade egg noodles and turned their leftovers into soup for us today instead. That’s what we’ll be eating. Then we’re hoping that not giving Patrick a nap has made him tired enough to go to bed on time.

Transplant Day 49 and Clinic again

I am trying a short post from my cell phone again. That will explain the crazy words in wrong places.

Patrick was angry with me today. I think he wanted more attention. And I think he wasn’t ready to skip his nap two days in a row. But we made it through.

One of our friends here for to go home yesterday. More of that will happen as families had home for Christmas. That made it so morning med prep wasn’t as quiet and lonely.  A few people were there to say goodbye.

We spent some time today trying to get ready for Brian to come back. He comes in tomorrow. So we cleaned and we shopped.

We had a follow up visit with the transplant team today. I bought Patrick a bag of BBQ potato chips at the store and he are these through the whole appointment.. Spitting them out in a bag while we talked and no one batted an eye.

Things still look really good this week. His output was a bit high yesterday which worried me, but they said it was still very good. The changes today were minor. They are adding a lipid to his formula in the morning to help make sure he doesn’t get a fatty avid deficiency. Also, he has been too dry, so they are adding some extra fluid. Mostly just a recipe change. Well, plus a volume change, but that is still easy so long at his gut is OK absorbing it.

The concern is still making sure his lungs stay clear so no elecare formula for a few more weeks.

After clinic, we dropped off some spare parts (a line repair kit and g tube button) to a family we meet inpatient. Their little girl just got a line and started TPN. So we wanted to give her the makings of a special doll.

The rest of the day included boys clues, a craft, soup for dinner that Patrick ate well, and playing the piano. This was made sweeter as I fit some audience tonight.. The grandparents of the boy who passed away. Turned out grandpa is a  baptist patriot. They came just to listen to the music.

I just crashed helping Patrick sleep
so this is a quick update.  More tomorrow. I have high hopes Brian can fix my internet

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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.