Category: Recovery

Transplant Day 82 and golden tickets

 

Daddy is back!! Brian got back into town Saturday evening. Patrick couldn’t have been happier. And we’ve stayed busy all weekend.

Mostly, we’ve been busy cooking. If December is the most charitable month that they see at the Ronald McDonald House, January is its leanest. This week only had a couple of dinner groups scheduled. But there are a lot of donated turkeys and hams left over from the Christmas season. So last week, after having pretty good success last week making a ham and having the rest of the house help make side dishes, they offered us a turkey.

Sunday, we Brian helped get a turkey in the oven, and let’s be honest, did more than me watching it to make sure it came out ok. And then yesterday, we went shopping and got ingredients for Brian to cook pasta for the whole house, too. I’m wondering if he’s frustrated with having cooked large meals for large groups of people his first two nights here.

But the food was really AMAZING. And right now, there are only a handful of families living in the house who don’t have kids at the hospital and so if someone is going to be cooking, it is going to be us. It feels good to know we’re helping other people with something that we knew makes such a big difference. And we like the company for dinner, too.

Grocery shopping was just one of our adventures yesterday, though. Because yesterday was a holiday, Brian suggested that we treat it like one. So we went to the zoo. It has been beautiful here the past few days. 50 degrees or better. And so the zoo, of course, was crowded on a day off of school. However, it also meant that there were a lot of animals outside which made for a fun and different zoo experience. We got to see bears and rhinos, which have been inside on our last few trips to the zoo. And since we have been going often, we didn’t feel like we were missing out on some of the more crowded indoor exhibits.

And then, since going to the zoo wore him out, Patrick came back and even willingly took a nap.

Today Brian had to work again. He goes to the computer room down the hall where he can video conference and code. We meet for lunch and then he’s off at dinner time.

Meanwhile, Patrick and I went to feeding therapy this morning. Today, we took some lunch meat ham and the goal was to get Patrick to swallow some of it. It actually worked and Patrick is really excited about wrapping cheese in ham now. He swallowed some ham sandwich, too.

Then, we went grocery shopping. Patrick’s been anxious to go back to the store with kid sized shopping carts. So we went today to pick up some of his staples and to let him spend his tooth fairy money.

That’s right, Patrick lost his second tooth this week. I have been worried. It was loose, but an adult tooth had grown in behind and it still wasn’t coming out. Well, he’s fallen in love with his electric toothbrush and brushing his teeth. And a couple of nights ago, he brushed that loose tooth right out. It took some hunting and sweeping to find the tooth, but we did find it. And it only took a little convincing to persuade him that brushing his teeth wouldn’t knock them all out.

The other new thing this past few days is that there is another kindergarten age girl in the house right now. Her mom has been trying her best to keep her caught up with school work. We decided to try to combine forces. So while we wait for dinner each night, I bring down some of our mommy school things and they study together. They both are staying and working longer this way.

In other news, Patrick’s ostomy incision finally healed enough to not need to pack it with gauze anymore. Just cleaning it and covering it with a bandaid. And that means he can shower. He’s not too excited, but I feel like he gets so much cleaner that way than sponge baths.

Tonight is the first we’ve tried going without a nap since Daddy got into town and I’m questioning my choice. Patrick has been very grumpy. But it’s a tricky tradeoff between sleeping at night and being nice during the day. And I haven’t found a balance that makes him feel good enough to ignore the side effects of his medications. He’s either too sleepy or not sleepy enough and either way he is usually either angry or bouncing off the walls.

I keep thinking that we are going to finally get a routine and get past this. Sometimes I think that we just need to hang on and get home and then things will get better.

But in church this week, they said something that really struck a chord and I’m trying to put it into practice. The speaker reminded me that always waiting for something next to be happy doesn’t usually result in being happy. It just means always waiting. As Dieter F. Uchtdorf taught:

So many people today are waiting for their own golden ticket—the ticket that they believe holds the key to the happiness they have always dreamed about. . .

There is nothing wrong with righteous yearnings—we hope and seek after things that are “virtuous, lovely, or of good report or praiseworthy.”4 The problem comes when we put our happiness on hold as we wait for some future event—our golden ticket—to appear. . .

The happiest people I know are not those who find their golden ticket; they are those who, while in pursuit of worthy goals, discover and treasure the beauty and sweetness of the everyday moments. They are the ones who, thread by daily thread, weave a tapestry of gratitude and wonder throughout their lives. These are they who are truly happy.

Read the full text of this amazing talk here.

So today, when I feel homesick, I’m checking myself and trying to be grateful and productive and happy in the moment I have been given.

Transplant Day 77 and Thursday

Tomorrow, we’ll have been outpatient again for a week. This time the transition has been a bit easier, though there is still PLENTY to adjust to. Especially since I’m still “packing” the wound from Patrick’s ostomy takedown. (It’s almost healed. Just not quite. And the job takes 15 minutes twice a day.)

We actually have some things on our calendar these days. Christmas break if over, so Patrick has school 3 times a week. His teacher comes Monday, Wednesday and Friday for an hour in the afternoon and they work on reading and writing and math. I am required to be there, but sometimes wish I wasn’t so I don’t slip and get in the way. However, it does give me some direction for the mommy school we do on any day without morning appointments.

Tuesdays and Thursdays will be feeding therapy days. We had our first session today and I found it was more productive than I expected. We blew fluff balls through straws to help build oral motor muscle strength. Then, I pulled out my assortment of foods and we had snack time together. Patrick was a bit shy at first, but guacamole won out. And before I knew it, he’d also experimented with soynut butter and crackers and even, at the end, took a lick of hummus. He didn’t think he’d like it, but then he ended up dipping his finger in for more and pouting when I didn’t let him.

I was actually quite relieved that Patrick ate well today. I was really quite afraid that he was getting sick or something was going wrong because I was changing diapers every 2 hour yesterday from afternoon till the middle of the night. It appears, however, that it maybe was just something he ate. Specifically, I tried some Avocado Ranch guacamole with him, which claimed to be non-dairy and vegan. But something in it didn’t sit quite right, I think.

In the end, though, no serious harm done. His labs looked ok today and his appetite was back and he essentially ate from 10 a.m. till almost 2 p.m., then also had a great dinner.

Monday and Thursday are lab draw days. This is the only day we have to get up on time. I kind of hate knowing that I let us sleep till 8 or later most days. However, Patrick’s evening care schedule keeps him up till about 9:30 most nights and since we decided that he doesn’t nap most days so he can sleep, he needs to sleep in the morning as long as he can stand.

This morning, the nurse was running late. That threw me a bit. Meds are due immediately after she leaves so that meant that I was late giving meds. It did give me a chance to get Patrick’s bed stripped down and laundry started. (I thought we’d be past that post-transplant, but he gets so much fluid at night that even 3 diapers isn’t enough to keep the bed dry. If he were potty trained, he’d never sleep.)

But I think that even with the shift in routine today, I got everything done that needed doing.

Thursdays are clinic days. The doctors on call rotate through clinic and so how clinic goes kind of varies by doctor. Today’s doctor was Dr. Vargas. He tends to be the conservative one on the team. So the plan this week is to stay the course. Increase Patrick’s feeds slightly so that he can have 2 more hours off of feeds each day and then increase them again in a few more days and he’ll be down to just 18 hours a day of tube feeding.

If Patrick hadn’t had a crazy upset belly scare last night, I might have been frustrated by a slow and steady approach, but right now with him simultaneously trying to learn to eat, this really does seem like the right plan. The good news is that everything, and I mean absolutely everything, else has stayed stable. That puts us closer to the criteria that will get us home. He needs to not need constant monitoring to keep his medication and diet steady and it’s really good news to prove that he could have an upset belly and not need to make big adjustments.

It was a beautiful day today. Well above freezing during the day. We barely even needed our coats. So after clinic, we went to the park to let Patrick play on the playground for a bit. There was still snow on the ground, though, and Patrick’s wet feet were slippery. He slipped and skinned his knee and needed a bandaid. And honestly, that made me happy. A normal childhood injury from doing a normal childhood thing.

It did, however, cut short Patrick’s play time. After that, he was done today. So, we ran to the store to pick up some things to take to dinner. (We were invited to eat with a friend from church).

I meant to let Patrick come back and take a short rest, but a 5 year old girl moved into the house this week and she and Patrick have become fast friends. She was in the kitchen, so they needed to play together. And that was fine. We were a little hurried getting set up for bedtime.. but nothing to really make us late.

Dinner was fun. They have 2 little kids just under Patrick’s age and they enjoy playing together. Even if Patrick was a bit loopy from being tired. (He has asked for naps 3 days in a row now that I didn’t have time for.) They missionaries were also there, which was an especial treat. Patrick loves the missionaries. I do, too. The spirit that is there when they teach, and they always bring a spiritual message when they come for dinner.

Amazingly, Patrick went to sleep fairly quickly. And I’ll be honest, I’m fighting to keep my eyes open. But I also think that Thursdays probably need to come with blog entries because those are the days we hear one more week of care plans from the clinic.

I’m looking forward to a Friday, though. We only have school tomorrow. And cleaning up the house so daddy can come back again. (And then we’ll see how the routine holds up.)

Transplant Day 72 and Discharge Again

I just tucked Patrick into his bed at the Ronald McDonald House. Tonight, at least for part of the night, I will sleep in a bed by myself. The spot on my arm where Patrick likes to snuggle all night that is beginning to be deeply bruised is very grateful for this development.

It’s been a busy couple of days. Yesterday, I got up early and started begging often for them to find a volunteer to come sit with Patrick so I could fix the battery problem with my car. It took till afternoon, though, to find someone. So I was a nervous wreck all morning.

Finally, I explained to Patrick why I was acting frustrated and suggested maybe I should pray to calm down. Well, the next thing I knew, Patrick folded his arms, bowed his head, and said a little prayer that a “vodateer” (volunteer) would come so I could fix my battery. Not 10 minutes later, one walked in.

So then I made a mad rush to get it done. I called my insurance policy’s roadside assistance. (Thanks to my mom for pointing out that I might have that service on my policy.) They sent “Rescue Rangers” to come give me a jump start. Because I was in a parking garage, the guy showed up in just a regular sedan. (Tow trucks don’t fit in this garage.) And when he hopped out with a jump starter, I was pretty doubtful. But his was better than mine and the car started right away.

I drove to AutoZone and told them I thought my battery needed replacing. He grabbed his tester, but one look at the battery told him that it was gone. (I kind of knew that.) So he sold me a new one, then installed it, cleaned up all the corrosion, oiled my screws, and checked my other fluids. I expected the help putting in the battery, but not to that level.

With the car now happily starting despite frigid temperatures, I drove back to the Ronald McDonald House to get Patrick’s feeding pump so he’d be ready for discharge.

He had a pretty good night, as far as hospital nights go. And this morning, we slept in and laid around in bed being lazy. But eventually they came to clean his room and check his vitals and look him over.

Rounds were a little bit late. That actually helped a bit because it made the rest of the day seem to go faster. They confirmed our plan from yesterday that he could leave the hospital today.

A couple of hours later, they had a problem with Patrick’s feeding bag and I suggested that we just switch to his home pump. From that point forward, I couldn’t get him to stop running and running away. He was so happy to be free. (And feeling so much better.)

While they worked on getting orders, Patrick and I went for walks, ate soup, played in the playroom. It got late enough in the day that I called Patrick’s school teacher to tell him we wouldn’t make it back to the Ronald McDonald House and ask him to come to the hospital instead. And just as we were wrapping up with school, they came to say they were ready for discharge.

We left the hospital about 3:30 and stopped at Jimmy John’s so we’d have some food for dinner. (Patrick loves Jimmy John’s bread and with his new appetite, happily dipped and entire 2 foot long day old loaf in bread and sucked the broth out of it.)

Getting settled here again was more work than I wanted. It takes time to unpack, do laundry, put away a month of medical supplies, etc. But eventually, I got it all done and we wandered downstairs for a late dinner. Patrick is so happy to get to walk away from me a bit and to visit with his friends here. That felt really REALLY nice.

The new formula is easier to make, which I’m especially happy about. Doing meds again was much more second nature. And we even managed to change the dressing on Patrick’s incision with minimal fuss. I got him into bed by 10 and asleep before 10:30.

I’ll admit, it was kind of sad to come back here. When we were here last, we were still in that post-Christmas happy state. Brian was here. It was lonely coming back and knowing we need to put away Christmas is kind of hard. I’d leave it up, but really this room is tiny and with all the new toys, I need to get the Christmas decorations out of here.

Here are some pictures from this hospital stay. I wasn’t really great about uploading them so they cover a few days.

Transplant Day 70 and real-life angels

God does notice us, and he watches over us. But it is usually through another person that he meets our needs. – Spencer W. Kimball

Brian flew home Monday. I was kind of worried how this would play out as the last time he left while Patrick was still inpatient, I found myself feeling in well over my head trying to juggle caring for Patrick and trying to piece together little things for myself like food and clothing and bathing.

However, instead, I’ve found the last couple of days almost relaxing. An important lesson I’m learning here is to let people help me with little things so I can be free for the bigger things. For example, Monday morning a hospital volunteer knocked on the door just as I finished dressing Patrick to ask if I needed a break.  So, she came in and played with Patrick while I took a shower, did my makeup (a rare luxury), made the bed, and cleaned up the room.

This week has been full of volunteer angels. From church, I find women I barely know (have met a few times or not at all) providing meals or coming and sitting with Patrick so that I can go back to the Ronald McDonald House to eat or shower or do other things. There is an after-holiday lull in charitable donations and so fewer meals are offered at the beginning of January than throughout the rest of the year. So, one evening while a lady from the Relief Society (church women’s organization) was introducing Patrick to the joys of a fart machine, I hurried back and made up a week’s worth of taco meat so I’d be ready for days I either couldn’t get away or nights where dinner wouldn’t be waiting.

This has been a blessing I can’t put into words. I am not unhappy that in our first month here, we ate such carefully portioned meals, a-la Hormel no refrigeration required microwave dinners, that I lost several pounds. But sometimes it was hard to be patient with Patrick and happy with this 24/7 mom/caregiver role I’m living because I was hungry. But right now, I am anything but hungry. I have to think to not end up being fed dinner twice. I haven’t even touched the supply of meals I bought right before Brian left because there has always been another one there someone has made for me.

But beyond food, this has given me the chance to keep up on laundry (with a little bit of help from a friend willing to fold and slip into my room my clothes if I can just get them to the dryer) and to stay showered and in fresh clothes (which I find goes a VERY long way to my general sense of well-being), and sane. I get an hour or two here and there and in it I try to be as productive as possible. I probably look like a mad-woman flying through the Ronald McDonald House when I go there.

Patrick is happier with this help, too. Someone appears offering help and he shoos me away to “the House’ so he can play. Patrick needs people. He loves when someone comes and he has someone new to play with.  He really loves the volunteers who come help Child Life with activities. We had an awesome time the other day flying airplanes with the ROTC. Right now, Patrick is one of just a handful of kids old enough to play with, so they are especially excited to see him, too.

It helps so much to have people. Tonight, I got a call from a woman from church who is quickly growing on me, saying that she had some time and could she come play with Patrick so I can get out. I almost felt like I was taking advantage because I’ve been so well taken care of, but I’ve sworn to myself to accept help when offered. So she came and I almost didn’t even leave because it’s -3 with a wind chill of some other horrid number and everything is closed here as a result. But I remembered that Patrick’s been running a touch low on diaper cream and I had one more jar of his preferred kind at the house, so I went to go.

But, when I got to my car, it just wouldn’t start. I’d turn the key and it sounded almost like it was sighing. I had a jump starter in the trunk, but even that didn’t help. It just showed me my battery’s power dropping from 60% to 40% to unreadable.

So I came back in and I bought diaper cream at the outpatient pharmacy instead. Then I called Brian and I called my dad to assess the symptoms. And then i came back to the room feeling a bit beyond alone and helpless. Only I wasn’t alone. There was this sweet angel from the ward making playdough P’s with Patrick on the floor. And she listened to me talk through my problem and she offered all the help she could think of. And then she just talked for a while which is something I am REALLY missing here… talking to grownups and especially friends of my own faith.

And things felt lighter going to bed. In fact, Patrick and I stayed awake and giggled and talked for a while. Sometimes, he and I get playing a little more like it’s a sleepover. And last night he told me that when he grows up he wants to be a firefighter and put water on things. And that when I grow up I want to be a doctor… not like the ones in the hospital, but like the toy one in his Duplo block set that he got yesterday.

Which reminds me of another super nice thing that strangers did for us. Right before Brian left town, he discovered a couple of Christmas presents hidden under the bed that we’d overlooked on Christmas morning. Well, they couldn’t have been more perfectly planned if we’d done it on purpose.

When we got married in December, I was really sad that the wedding and honeymoon took up most of the Christmas season for us. So we decided to extend our family’s Christmas holiday like they do in Europe. There, the 12 days of Christmas actually start on Christmas day and are counted forward until January 6th, also known as Epiphany. Or, in Italy where Brian was a missionary, it’s called Befana.

So, we have celebrated Befana. We leave out our shoes and a good witch fills them with little gifts. After Patrick went to sleep Monday night, I snuck down to the C store and picked up some treats for my shoes, then I put the newly found presents and some chips and a book into Patrick’s. And when he woke in the morning, we had our own little holiday. And he got a couple of fleece sweaters that have been perfect for these bitter cold days. And he got some duplo blocks that have proven to be great entertainment, too.

General Patrick update.. Tonight, they turned off his TPN again, hanging some IV fluids to keep him hydrated. He will reach full enteral (through the belly) feeds on Elecare Jr. tomorrow late afternoon. They will check some labwork in the morning and we’ll start talking about discharge again. (Which means that I will also be making some phone calls in the morning to see if my insurance’s emergency roadside service can help me fix the battery issue so we have a way to leave here.)

Patrick feels great. I’ve learned to change the dressing on his surgical incision and will need to still do that for a few weeks. He is not a big fan of the job, but has gotten so he doesn’t cry the whole time.

We spend our days mostly playing. Today, they got the playroom ready for patients to play in. It is still missing locks on the toy cabinets, so you have to have help and permission to play there and have to keep the door closed while there. But that just meant that Patrick had to have 3 hours straight playing there instead today. And the room all to himself.

While he played, I downloaded more of his homeschool materials and the hospital teacher helped me print some readers. A “cold day” made it so Patrick missed his post-holiday return to school this week.. again. He’s only had 4 actual “school days” since we got here. I just learned a couple of the ladies from church homeschool and I am getting ready to pounce and pick their brains to figure out how to make my mommy school efforts even better.

We’ve been working on just one more goal here. A few days ago, Patrick was complaining that his left leg and ankle hurt. This isn’t the first he’s complained of it, so I asked for a physical therapy consult. She came seeming ready to assure me my concerns were over something normal that would pass. She watched him walk and stand on tiptoes and squat. And as we worked, she shifted from telling me that his hip looked weak but would get better to a genuine concern about what she was seeing. This is somehow maybe related to his cerebral palsy and we don’t know if it’s really a new problem or just one made worse by recovery.

She gave me some exercises to try to get Patrick to do.. lifting his legs to the side and walking on his heels. Because of his dyspraxia (motor planning troubles), this seems really, really hard for him as he’s never tried to move that way before. At first, he just wouldn’t. But I’ve figured out that I can turn it into a game of silly walking mother-may-I or a “can you do this?” challenge and he’ll play along.

Nevertheless, my plan of doing occupational and feeding therapy only with my limited visits while he’s outpatient is kind of disintegrating. If this problem doesn’t go away before we leave here, we’ll need to do some follow-up therapy. And I really need to find the number and call and get that scheduled.

I think Patrick feels more in control of himself here at the hospital. Maybe because the rules and routine are more predictable. Maybe because he’s spent more time here. Maybe just because his medication levels have been steady while he is here. Maybe because it’s not Christmas anymore. Maybe it’s because he can order ham and chicken broth for every meal. Or because my attention is less divided and all of the ways he acts out are him trying to have my undivided attention. I don’t know for sure, but I’ve also been using the extra time I have with helpers here trying to pull together some picture schedule and behavior reminder resources so going back to the Ronald McDonald House can maybe feel less chaotic.

Regardless, I can see that our time here is special and important. And I am beyond grateful for the helpers who have let me use this time well instead of just trying to survive each day.

 

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 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.

The week in pictures

So while I’ve got an internet connection, I thought I should probably share some of the pictures that have been taken since we left the hospital.