Transplant day 92 and the importance of education

So I don’t have much of an update for today. Patrick’s gut is needing more time to recover so feeds are advancing only very slowly. He might make it back off of TPN tonight. We’ll be here till at least Sunday. We are stir crazy and sleepy, but getting by.

But, with all this extra time, I thought I’d take a minute to write one of those blog posts I’ve been meaning to write for a while. Today’s subject: education.

I have a friend who is a high school guidance counselor for at-risk kids. We had a long conversation the other day about how easy it is to give up when life gets hard and how she sees Patrick’s story as an example. Of not giving up. Of trying to stay positive.

I told her I hoped it also could be an example of the value of education. See, one could argue that I sit around in a hospital room or at home most of the day. I am a stay-at-home mom. What good did my expensive and time-consuming college degree in Spanish and Teaching English as a Second Language do me? Couldn’t it be said that bad luck or circumstance or whatever robbed me of opportunity? I’m not climbing any career ladders. In fact, my resume probably is pretty unimpressive right now.

Except, well, that that isn’t the case at all. The very best thing I could have done for my current situation was to get an education.

Today is my mom’s birthday. And I need to give credit to my mother. She taught me by example that an educated and involved stay-at-home mom was of great benefit to her children and to society in general.

I use my education every day. Small examples: yesterday I had the cramped crowded hospital room cleaned in extra detail because I have made friends with the woman who cleans it. We speak in Spanish. I have enough friends in similar circumstances to not take her for granted. And so when I told her I was feeling cramped and cluttered yesterday, she gave me some extra time.

But it’s more than that. Here are some reasons I am grateful for my education.

1. I learned how to learn. Can I tell you how important is to be able to study out a problem by myself? Patrick needs to start a PPI medication to help prevent future ulcers. (Think Pepcid.) When the prescription went to my pharmacy, they called and said the liquid medication wasn’t formulary. (That means in the list of covered prescriptions.) They also said that starting February 1st, no medications in that drug class would be formulary because they are available over the counter.

So, I went online and and I looked up my insurance company’s drug formulary. I found a list of all of the different types of medications that my insurance would cover. I read up on how each different variation might work differently. Then I called the insurance company and explained why the medicine was needed and why nothing in the approved drug formulary would work to treat the risk of ulcers for Patrick right now. I also explained how no over-the-counter options could work for him.

It worked. My case manager took the issue to the decision makers and by the end of the day they had approved coverage for him. Even in spite of the policy change.

The hospital pharmacist paid me a visit the next day, and also paid me a high compliment. She told her students, “She is really good at knowing her prescriptions and coverage. Don’t expect that from other patients.”

The thing is, I wrote a lot of research papers over the years. I learned how to study, understand a new subject, and then put what I learned into a useful argument. (I took a persuasive writing course that has been especially useful.)

2. I can communicate with doctors on their level. I know that doctors don’t mean to talk down to patients. But I can tell you that they do talk differently to patients and caregivers who have an education. If they don’t have to spend time building a really basic understanding, you will be given more opportunities.

Would you believe that they have patients who don’t know how to use measuring spoons? Have to be taught by a nurse. Or who can’t stick to a schedule enough to give certain frequent medications at home. If it seems that we “get away with” doing a lot of treatment at home, it isn’t by coincidence. I am starting with a more solid base.

3. I use my general education all the time. I was a language and humanities girl. I did well in math and science, but didn’t like them. Guess what? I use math and science all the time. I remember sitting in the PICU after Patrick’s cardiac arrest thinking, “Boy I wish I’d paid better attention in biology.” Now I am learning and paying attention to a lot of that. Can you tell me what dose in milligrams a medication is if you’re giving 2 mL of a 15 mg/mL solution? Yup. that’s algebra. Calculating a replacement fluid dose and rate? Multiplication tables in your head. Trying to figure out how much of which foods to give? Gotta understand osmolarity. This humanities major does a lot of math.

4. I know how to use language. Every industry has its jargon. If you talk the talk, you get more respect. You get less than 5 minutes with the doctors for rounds. In that time, they will read off a lot of medical information boiled down into language that makes it quick to communicate what is going on with a patient. Then, you can either spend your time having that translated to you… or, if you speak the language, you can use it to ask your questions and make requests.

I am asked all the time what my medical background is. Guess what? Just Patrick. But I have a good background in latin and greek roots so it doesn’t take long for me to learn words about anatomy or to learn from their roots what different medications do or are made of. I learned this jargon quickly and that means I know how to use it. I never feel like they are talking over my head. And that means I can be a part of the conversation.

What’s more, I’ve had to do a lot of learning how to reword my language to help Patrick’s behavior. Communicating with a child who has cognitive delays, language delays, and behavioral problems is challenging. It takes completely relearning how to use language to get your message across. It took a lot of time having therapists work with me to learn how, but it makes a HUGE difference for all of us.

5. I can teach my son. This last is probably the biggest for me right now. The version of “Free Appropriate Public Education” being offered through homebound education right now is laughable. Earlier this week, for whatever reason, Patrick’s teacher appeared, decided Patrick was unfocused and would like to be doing something else, and he left. If I didn’t know how to teach, Patrick would be completely behind. We spend time every day working on writing and reading and counting. It not only helps pass the time, but is filling in the huge gap left by our current situation. It means I can grab the moments when he is ready to learn and teach, even if that happens at some random hour in the middle of the night.

6. I can help others. Speaking spanish. Knowing how to cook and to sew. Playing the piano. Understanding doctors and short gut. Being able to research and know how an illness is spread and protect others. Knowing how children learn. Understanding computers. Having a strong scriptural foundation for my faith. All of these skills put me in a position to not just survive myself, but to help the people around me, too. No matter where I am.

I don’t mean to sound arrogant in any of this. What I’m trying to say is this… Education is never wasted. Whatever you learn, makes your life better. I am not working in the workforce.. but I use my education every day.

“If a person gains more knowledge and intelligence in this life through his diligence and obedience … , he will have so much the advantage in the world to come” (D&C 130:19).

So if you’re thinking that right now you’ve been dealt a rotten hand and you can’t do anything to make the situation better. If you’re wondering if it is worth trying to excel in the mandatory subjects at school that you just can’t imagine a real life application for. If you’re thinking it would be better to just give up and focus on surviving right now…

It is worth getting an education. I promise. It is.

Now back to the current application of my education… trying to understand how reaching 90 days post transplant and the end of our insurance company’s umbrella transplant pricing contract is going to change how services will be billed.

Transplant Day 91 and feeling cooped up

Patrick woke up while I was taking Brian to the airport and so the nurse let him come to the door of his room to play so he wouldn't feel alone

Patrick woke up while I was taking Brian to the airport and so the nurse let him come to the door of his room to play so he wouldn’t feel alone

I’ve written before about how crazed Patrick gets when he’s stir crazy and feeling healthy in the hospital. Stir crazy and tired and steroids make this even harder. It’s cold and flu season and the hospital is quite full and we ended up being admitted in the last room they had the day we arrived and most of my past couple of days have been spent trying to help a feeling-better Patrick not explode from being cooped up.

This takes many forms. Sometimes is TV marathons. For the first time in Patrick’s life, I know the PBS and Disney Channel TV schedules. Just because that gives us some variety from the DVD’s that we have all memorized by now.

A couple of days ago, it was a trip to Walmart’s clearance shelves. I stumbled into a school supplies clearance sale that got me glitter glue and stamps and dry erase markers and a bingo dauber and a clipboard with storage. All of that adds up to some of Patrick’s favorite ways to play.

Yesterday morning, it looked like an exercise and dance party in the room. I turned on some mp3’s of songs that Patrick and I used in mommy and me exercise class and made him work his little body until he was really tired and insisted on sitting down. Favorite quote from the music therapist, “I’ve never seen anyone learning to samba in their room.” Yup, I even was teaching Patrick Brazilian street samba that I learned from the portuguese foriegn language immersion house college.

Thank goodness this hasn’t relied just on me. We’ve had lots of volunteers who have pushed through when Patrick was too tired to think or play. We have visits from music therapy and feeding and occupational therapy. We have nurses who give him extra time when they can. And up till yesterday, we had daddy.

I was very grateful for the volunteers in that regard. It is hard to have had my husband and best friend here but barely spend any time with him because we were stuck in a hospital room. Volunteers appeared at just the right time for me to a carry out dinner hosted by the Hilton at the RMH. (Which is always fancy and amazing). It was almost like a date. And yesterday, another gave us the chance to go have lunch together. It was 60 degrees and we snuck out to he patio.

Yesterday, we wore Patrick out thoroughly and then put him down for a nap. Then, I drove Brian back to the airport. At least I got to see him off this week. And he’s got a lot to do at home because still none of these setbacks have anything to do with complications of transplant and so the idea of coming back home looms closer and closer.

I’ve learned two things about that subject lately. I used to imagine that when they said recovery here for a year that it meant that there would be a set of goals that needed met. Well, it turns out Patrick is meeting those goals with flying colors. If he’d had some rejection or needed more hospital recovery time at first, that would have kept us here earlier. But really, it’s the little things that keep you here. A virus you catch. An unexplained swing in medication. A suspicion of rejection. Otherwise, you hit your diet goals and gain weight and you go.

But that doesn’t mean you stay home, either. There are 3 other transplant families living long term at the Ronald McDonald House. One is newly transplanted and has been being told since Christmas that they’d go home next week. But a little thing goes wrong and they add one more week. Week after week. Another has been home a few times, but their son will have problems crop up that bring them back and they have been back and forth for 2 years. And the last went home quickly with no problems and lived wonderfully with their graft for years, only needing an annual checkup.. But a year ago, she fell and it damaged her graft. She eventually lost it and just lost her 3rd transplant.

So, see, anything can happen. We could be home soon and stay, or think we’re coming home but not make it for a while, or we could be back and forth. What I do know is that we will be back here.

Anyway – medical update. Still no one has told me formal biopsy results. But when we asked about them yesterday, the response was “You haven’t heard? I’m pretty sure it was no rejection.” So I guess that is that. His belly seems back to normal and yesterday we pushed for them to advance feeds faster. They are going up 10 cc’s every 8 hours and so far, it seems he is doing great with it. Plus, he’s back to eating again. And amazing me by chewing and swallowing more and more foods. We hope that he’ll reach full feeds and be able to go to the Ronald McDonald house by the weekend. He’ll do another week of ulcer medication. (They tried to let me off the hook on this and I pushed to say that I really don’t mind giving it.) And we’re switching from ranitidine to a PPI (prevacid) which took some negotiation to get covered by insurance, but I think we finally got it.

They say Patrick isn’t contagious anymore, but hospital policy still requires he stay on precautions till he goes.

This gives us more confidence taking him back to the Ronald McDonald House. This go-around of being sick there has been awkward. To say the least. One of the other transplant patients also caught the virus, then his mom did.. and so there was panic about an outbreak in the house. I hear that others were sick, but only those of us with immune suppressed kids spoke out about it. (Because we know that hiding you’re sick just gets more people sick.) Unfortunately, that means that there were a few families who are newer at this who really panicked about the risk of catching it and, because norovirus isn’t airborne so handwashing was the only precaution the team advised, decided that we weren’t being careful and were the reason others had caught the illness. It meant some very awkward conversations and angry stares and other really uncomfortable treatment that made us feel like we were lepers living in society when, in fact, we were being so much MORE careful than circumstances required.

It is going to be hard to go back. I have some wounded pride I need to work through. I’d better work on it, too, because this isn’t going to be the last time we have some conflicts about illness and immune suppression. Hopefully, I’ve learned a little bit of empathy. Or at least, I hope this has taught me a little more tact. I am going to be on the protective side more often and know I’ve accidentally been offensive myself.

And really, there is some comfort for us in having made it through an illness here before going home. To know what illness and immune suppression is like, at least to some degree.

Oh – meanwhile.. Patrick seems to have gone through a growth spurt. His diapers don’t fit him the same way anymore. (problem is they don’t stock pull-ups for the inbetween between pediatric and adult diapers.) And when I hold him on my lap, he feels HUGE.

Transplant Day 87 and a quick update

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The hospital internet is iffy today and things have been quiet. So a brief update. No biopsy results.. But that means no bad news yet. Patrick’s bleeding has stopped on the new meds and they started letting him eat as well as some small feeds today. His belly is still a bit unsettled. Brian and I are better.

Tonight, Patrick’s progress levels are high and he is acting like a child possessed, but only when we sit with him. On his own he is fine. He has one of his favorite nurses which should balance out the night.

They brought Patrick an easel and he had painted and played and napped and his school teacher came and gowned and gloved up to work with him to he was to tired to be productive. Oh, and Biscuit came and brought Patrick a book.

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Transplant day 86 and Sick, sick, sick

Well, I think it would be safe to say that the past 48 hours have been among the hardest we have been through. Friday, Patrick seemed to be feeling better. Well, except that he still had very frequent, black diarrhea (sorry, remember, blogging about intestines here, remember.) The team explained that bleeding in the GI tract wasn’t unexpected in an immune suppressed patient wasn’t entirely unexpected for an immune suppressed patient with Norwalk, a.k.a. norovirus.

Otherwise, Patrick was happy and playing all day. However, as the day went on, I started to feel worse and worse. I made a bit mistake by eating a great big, yummy burrito for dinner. About half an hour later my body told me that, yup, that tender tummy feeling meant that I had caught what Patrick has. Not a big surprise, given just how often Patrick had gotten sick while I was holding him the day before.

Well, my sweet husband saw that I was looking worse and worse and, even though he was also starting to realize he was sick, sent me back to the Ronald McDonald house for the night. Good thing, too.. I am sure I wouldn’t have been able to take care of Patrick at all that night. I was SO sick! But, on the way home, I stopped at the store and picked up medicines and gatorade and I spent the night trying to pull myself together enough to be mommy again in the morning.

And, amazingly, by morning even though I felt very weak, I was doing well enough to go back.

It sounds like Brian and Patrick had a pretty rough night.. changing diapers every couple of hours. When I came in, Patrick was laying on the couch and looking quite pale, but happy. I sat down next to him and asked him how he felt. He said he was ok, but I’d check again every few minutes. Then his nurse gave him his morning medications. I asked how he felt, Patrick said, “sick!” and then started throwing up blood.

We put his g-tube to drain so he wouldn’t throw up anymore.. but that kind of seemed to be the kick off for a rough day. Not long afterwards, he started to act as though his belly hurt. That got worse and worse throughout the day. (We think it was stomach cramps and maybe gas.) But at its worst moment, Patrick was screaming in pain, curled up in a ball, and not willing to be touched.

Finally, they got some pain medicine to stay down and he fell asleep, which made a difference.

Because of the bleeding, they decided to give him a transfusion. Those run over several hours and we let him rest while it was running. His color started to come back. For most of the day, Brian and I took turns laying in bed with him holding his hand and helping place stethescopes and thermometers so he trusted they wouldn’t hurt him. (This was a good way for sick mommy and daddy to rest, too.)

Meanwhile, we sipped gatorade and slowly started to eat again.

Then, once the transfusion was done, we made him get out of bed to be weighed. I hate doing this: making him get up and move when he’s in pain. He just clings to my neck and begs me not to hurt him. But moving helped his body reset a bit and over the next couple of hours, his pain started to improve.

By evening, Brian told Patrick we needed him to get up and walk again. We got him out of bed and he sat on the couch playing with toys until almost 10.

And last night, he slept peacefully all night. That was amazing. We ALL needed the rest.

I am feeling 80% better this morning. Patrick’s pain seems to be gone, though he is really guarded.

The plan discussed with the team yesterday was to take him down for an endoscopy today if the bleeding hadn’t stopped. Patrick’s diarrhea has slowed. But his g-tube has been to downdrain and there is still blood there and in his occasional diaper, so I’m assuming that is still going to happen. I know he was put on the schedule yesterday because someone from anesthesiology already came to talk to us.

I am trying to find the right way to break this news to Patrick. I’m sure he’s terrified of anesthesia here because it has always ended in surgery. Not sure I can explain to convince him otherwise.

But I hope we can find some answers that will help him finish getting better. We knew taking down Patrick ostomy meant more endoscopies and so this is going to be a part of his new routine.

I hope that all of us being sick together in the hospital doesn’t become routine. Sure, it’s nice that we can pick up a phone and order food and the nurses really have been kind to all of us. And, since he’s in isolation, we at least aren’t putting anyone else at risk visiting here. (In fact, it’s probably better than hanging out at the Ronald McDonald House). BUT I don’t want this to be the precedent for the new normal in illness after immune suppression.

We know illness is going to hit him hard every time and be hard to shake. But hopefully the next one doesn’t take down the whole family. Right now, we really hate Norwalk.

Transplant Day 84 and norovirus

Let me preface this blog post with a warning. You are reading a blog about intestines. Intestines make poop. Also, when intestines get sick, all kinds of bad things happen. Patrick got sick today. And we have blog followers who have enough medical need-to-know that I will be writing about yucky poopy things. If you don’t want to read about yucky poopy things, then know that Patrick was admitted to the hospital today with norovirus, an intestinal virus, that has made him very sick and with his compromised immune system is dangerous. We don’t know what this means for him or how long we will be here, but he is feeling yucky and scared, but so far ok.

Now, disclaimer done. Here is how today went. Patrick went to bed happy last night. In fact, so happy that he laid in bed and tried to learn about rhyming words with me for an hour. He was still sleeping well at 2:30 when I refilled his formula. But at 5:30, when he woke up, he sounded pretty unhappy. This is a usual time for him to request me to come lay with him. So I went and laid down with him and he slept until 6:30 when he started doing all kind of things that he knows hurt me and wake me up.

I am a slow learner and forget that this behavior means that Patrick is trying to get attention because something is wrong. He was obviously was exhausted, as we all were, so I kept trying to get him to sleep and he would for a few minutes at a time before pulling my hair or pinching my fingers or banging his hand down on my face again.

At 7:15 I decided that we weren’t going to get enough sleep if I got him back to sleep, given it was lab day, so I got out of bed. Something about Patrick’s smell made me think he needed to be cleaned up. So I took him immediately to shower, much to his displeasure.

Well, he wouldn’t stand up straight. Just kept leaning on everything and was very whiny and then, as I took off his diaper, I noticed that he was acting queasy and that his belly looked kind of round. I poked. It was hard.

So I grabbed a diaper and I told him I thought he needed to poop. He did. And he went and he went and in seconds the diaper was full and his legs were wet and, given that Patrick’s stool has been solid or at least mushy for weeks, I knew something was wrong.

But now he really needed a shower. And a shower actually seemed to make him feel better. Brian and I talked and decided that maybe Patrick had eaten something he was allergic to the night before, as he’d been in the mood to try all kinds of new foods.

So we got him dressed and watching TV on his bed and we cleaned up the room and got dressed. And at 8:30 his nurse came and he seemed fine.. But then we made him sit up so she could listen to his heart. And he threw up all over both of us.

She managed to get labs drawn, but by the time she left, we could tell that Patrick was more than just a little bit sick. So, I called and left a message for the team and we stripped the bed and started some laundry and got permission to eat in our room.

Finally, around 10, the nurse coordinator called me back and asked me what our instinct was. I told her it seemed like a virus. But that I didn’t know what that meant we should do. She consulted with the nurse practitioner who calls the shots, and then called back to say that they wanted him to come in.

Checking in wasn’t easy. Even years after our zip code was changed, the computer system here seems to hate our new zip code.  It took over half an hour to get Patrick registered and meanwhile he had to go again, and made quite the puddle in both of our laps when his diaper leaked.. and he was trying his best not to throw up. And finally the woman at the desk called it good enough and brought us upstairs while Brian stayed to try to sort out the registration.

They did a full workup when we came in with cultures and viral panels and stool cultures. We just heard back that Patrick has norovirus. This is a pretty common and contagious stomach virus that, for many people, would cause an upset stomach for a day or two. It has a reputation for floating around the Ronald McDonald House.

For Patrick, on immune suppressants and with a brand new intestine, we don’t know what it will mean. For today, it means smelly liquid stool and nausea and a low-grade fever. He has spent the day laying in bed.. sleeping some. Whining a lot. Begging for water. And lying and saying that he is “all better” and “I feel great.” He’s on IV fluids and not allowed to eat or drink. Once he got an IV bolus of fluid, he started looking and feeling better. He is arguing over everything and saying “ow” or “stop that” over the slightest touches. (Not sure they hurt. He may just be defensive.) I think he’s finally past the initial anxiety of the hospital admission.

So the plan for now is to wait. There is no treatment for norovirus. Just need to make sure that he stays hydrated, that he absorbs his prograf properly, and that they watch for inflammation that might put his graft at risk. He’ll stay in the hospital, in isolation, until this virus passes.

The hospital is very full. We are in the last room, a tiny, outdated, smelly room with construction going on just the other side of the wall. This could be a long wait. But at least we have a room.

We are bummed that another daddy visit is being spent in the hospital.

I’m a little bit worried, knowing how contagious this bug is and just how many changes of clothes we’ve been through, that I am going to catch this and then I wonder just who will take care of Patrick if I can’t.

But only time will tell. We appreciate your ongoing prayers. We know that miracles are wrought by prayer. We have seen it over and over again in the past few months. So please keep those prayers coming.

A very rare moment of calm. Patrick spotted a motor trend magazine in the therapy waiting room, sat down, and flipped through it.

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 75 and eating

If I had to pick a word to describe the current focus of our days it would be: food. Patrick has always enjoyed food, but also seemed to know that it didn’t sit right with him to eat much, and so he always reigned himself in pretty well. But now that he has his “new belly,” Patrick has a renewed and kind of voracious interest in food.

Yesterday, we started our outpatient time with morning appointments. We got up early to be ready for Patrick’s morning nurse visit and blood draw. (We do this twice a week to check his nutrition and medication levels.) This is a pretty big feat right now. Instead of being able to put Patrick in a tub while I get things ready, right now he needs a sponge bath and the dressing on his ostomy incision changed.

We had an 11 a.m. appointment with an occupational therapist who also does feeding therapy. I needed to call to confirm that the plan really was to see her, because of some confusion as we went out the door on Friday.. and when that call was done, our time was pretty short. Patrick likes to start his day by sitting down and chewing up a couple of slices of ham. He eats for about an hour. And we didn’t have an hour.

So I tried to sweeten the deal. I promised him we could eat out. I’d take him to McDonalds for pancakes. (Note: this was previously one of our favorite mommy/son dates.) Nope. Patrick threw what I think was the first all-out tantrum I’ve ever seen from him. He wanted his ham.

Once he calmed down, we went to McDonald’s anyway. I talked them into giving me some of the ham from the McMuffin sandwich in place of the sausage in the Big Breakfast. He had both ham and pancakes, plus some powerade (which was a splurge).. and he forgave me.

The appointment was interesting. He was all over the place which made it kind of hard to work with him. She did some testing of his fine motor and attention skills, then we talked about food. She explained that she uses a sensory program designed to help kids become brave enough to touch, taste, smell and otherwise explore food. I told her we might already be past that. But we decided to give it a try to see if it would help. And we set up bi-weekly appointments for the next month. (This is terrifying to me. It will burn through Patrick’s therapy visits in no time at all.)

Anyway – once the appoint was done, we came back to the Ronald McDonald House for lunch. This time, soup. Chicken broth is one of Patrick’s biggest go-to foods. He eats at least a cup a day. And he dips at least 4 rolls of slices of bread in it while he eats it. This also can take up to an hour.

Patrick happily came back to the room to play for a little bit in the afternoon, giving me time to get a few phone calls made. (Working on setting up some respite care that we have qualified for once we get home… I’m going to need to hire someone to do this and finding the right person seems like a very intimidating idea. But we’ll get there.)

Then, it was time for school. Patrick did great this time! Would you believe that his teacher can tell him specific letters to write and, although sloppy, Patrick is making the right shapes for them? They also worked on reading a book and some counting and sorting activities. I think it was our best school day here yet.

After school, we had snack time. Thinking that Patrick needs to go back a little bit in food demands and start where babies start learning to eat, I’ve been trying out different big-kid flavored purees. I introduced him to guacamole and he actually really loved it, so we have some for snack every day. And when we ran out and he still wanted to eat, I grabbed the next in the “new foods” category and pulled out a jar of SoyNut butter.

Patrick’s allergic to peanuts and therefore peanut butter, but insisted this week that all kids need peanut butter. So when we found a good allergy-safe department at a grocery store this week I picked up a jar of low-sugar soynut butter. That sounds pretty unappetizing, but I actually liked it better than the Sunbutter (sunflower seed butter) that we tried last week. The taste is pretty similar. And he really liked it.

In fact, after exploring dipping teddy grahams in it for a while, I mentioned that my family has always liked peanut butter filled celery. Well, Patrick wanted to try and I happened to have some celery. Not only did he enjoy licking the soynut butter out of the celery, but then decided to try out taking bites of the celery and chewing it up, too. This is kind of huge from an oral motor skills standpoint.

We ended snack as the dinner group started to arrive to cook dinner. Patrick loves being the welcoming committee for the house and made friends quickly. But we didn’t stay in their way too long. One of the women from church who came and sat with Patrick last week came again last night to play with him. I was feeling caught up enough to stay and get to know her a bit while we played. She brought walkie talkies, which Patrick loved. (And it kind of helped because when he’d sneak away, I could ask him where he was or call him back. I kind of found myself wishing I still had them again today.) Patrick laughed for the whole hour she was here. He really needed that. So did I. And we were excited to find we share a love of hockey. And then she left and we went to dinner.

For dinner, we are a bit at the mercy of what the dinner groups choose to make for us. I’ll make Patrick alternatives but am trying to teach him to try different things that are served to him. Well, last night he just wanted the ham that I’d shorted him for breakfast. After much negotiation, we agreed that if he’d try the spaghetti they’d made, I’d let him have ham. He took two bites and then settled in with his ham.

But of course, just as we started clearing up plates, he asked for spaghetti again and sat down and licked the sauce off of a whole bowl.

We stayed up a little late last night talking to Daddy because it had been too many days and we really missed talking. We didn’t have committments this morning so I figured we could afford to sleep in.

I accidentally woke Patrick sneaking away to go to the potty this morning instead of snuggling with him. So we got up anyway. He really kind of needed a bath anyway, so I went and set up his sponge bath.

But, just as I got him naked, even taking the dressing off of his incision, the fire alarm rang. Talk about bad timing. There we were trying to get a dressing and diaper and clothes while they were banging doors telling everyone they really did need to get out.

By the time we got downstairs, I could see a group that was maybe from the house being led away somewhere far across the parking lot. But I was in PJ’s and Patrick was in an assortment of fleece I’d thrown on him and we were wrapped in blankets and if I was wrong about them, then I’d be crossing the parking lot carrying him (it was so loud he couldn’t settle down to walk) in the cold for nothing. I had grabbed my cell phone, but not my keys so we couldn’t get in the car. I looked up and saw a fire truck approaching and decided that was the better place to go wait.

We walked around front and the firemen came over and brought Patrick stickers and offered him the chance to look in their fire trucks. (He said thanks, but no thanks.) And then, once they had cleared the building, they let us go wait inside. It turned out that some water had leaked and set off the alarm somehow. I really hope they found and fixed it so we don’t have to evacuate every time that room showers. But if we do, I learned a little more about what to bring along and where to go.

The morning schedule was all thrown off. I gave the really time-sensitive medicines, but left some of the others for later. I properly changed Patrick’s surgical dressing and his central line dressing, too. I showered and we got dressed. And then today, because right now 80% of the families staying here have someone staying at the hospital and the house was quieter than usual, we did a laundry morning. We washed the dirty clothes plus most of the linens.

We came back to the room and used some index cards to make a letter and word wall. As Patrick is introduced to new sight words, we’ll add them to the wall under the corresponding first letter. He loves going over and reading me his wall.

Then, Patrick needed out of the house, so I decided we’d take an outing to the dollar store. He carefully considered all the things he could buy and chose a jumbo calculator. I picked up some new scissors for him and some bingo daubers to use in place of do-a-dot markers in some mommy school work.

Then, we decided to go check out the grocery store in the same parking lot. (We actually drove a ways to go to the dollar store.) The store was a big win. They had kid-sized shopping carts which is one of Patrick’s favorite activities. They also had all of his biggest needs.. ham and chicken broth and single serve guacamole and rolls.

The late night and early morning left Patrick in need of a nap. (Because otherwise, he was just being naughty… especially in that he kept sneaking away from me and going to visit people on other floors of the house.) He slept till 6, when I woke up for dinner where he ate his first choice, chicken broth, and then some guacamole (also known as mokily-mokily) because he “loves it so much”. And now we are staying up late watching Blues Clues because going to bed on time is pointless when he naps late.

Tomorrow, I hope that we will actually succeed in sleeping in. And then we’ll eat some more old favorites and new foods and have a little bit of school, too.

One day Patrick and I decided to go to the gift shop. He didn't want to take off his robe and because cold and flu season is in full swing, I made him wear a mask and gloves. We got a lot of caring smiles this outing.

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.