Tag: recovery

From November to February

It’s been 3 months since I last wrote. 3 months since Patrick’s one-year transplant anniversary. 3 very busy, full and blessed months. And I have kept meaning to write but it was all just going by so quickly, so busily, so trying-to-keep-us-moving-forwardly that I haven’t. Since I’m catching you up, this could be a long one.

This time last year, Patrick was finally showing improvements after a very terrifying battle with “the stomach flu,” also known as norovirus.. something I will never take for granted again. And I wasn’t telling any of you, but the doctors in their morning rounds were talking about how, if Patrick was able to start to tolerate feeds again, they didn’t have any transplant-related reasons for keeping him in Nebraska. We didn’t believe them. We didn’t even dare hope it. And yet, two weeks later on Valentine’s weekend, they sent us home.

In the three and a half months between Halloween and Valentine’s Day, Patrick made such amazing strides. He proved to us that miracles do happen.

And this year, he has done it again. He has come SO far in the past 3 and a half months.

November was challenging. We had a wonderful birthday trip to Disneyland that I have great intentions of sharing with you later. We started out sentimental about transplant. But honestly, after about half a day of the celebration we were ready to start celebrating not where we’d been but where we were going. And so, celebrating his birthday was extra sweet and the beginning of some amazing new things.

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One of Patrick’s favorite activities.. tracing letters. Best done hanging off of something.

When we left on the trip, Patrick was struggling with the transition to school and with potty training especially. I was spending my afternoons at the school trying to find a way to help him through his anxiety. That was a theme of November. Visiting the school and trying to help him to not be afraid and to mediate a peace between him and his aide as they were locked in a battle of wills over the issue.

And then, like that, he succeeded. And we threw a bit of a party for him. We literally danced right then and there. And then another day I was late and when I got there, he didn’t need me after all and I snuck away without him knowing I’d come. And slowly I was able to slip away.

However, with that battle of wills over, Patrick shifted his battle to be more directed at his aide. We started to have big behavioral problems with him at school. One morning, Patrick was avoiding getting ready for school and then he broke down and he cried. He crawled up in my lap and he told me how discourage he was there. And I didn’t know how to help him and I cried, too.

And after two miserable weeks, Patrick’s monthly bloodwork revealed that his Prograf levels were sky high. No wonder he wasn’t happy! He was always grumpy and angry and uncooperative when his levels were so high. So we adjusted the dose and the next day he was back to himself again.

And I did some research and some talking to doctors and some praying and realized that when we’d discontinued Patrick’s tube feeds at the beginning of November, he’d started to take his evening meds on an empty stomach.

It was a big ah-hah! So at an appointment with his GI, where we already were talking about how to push more calories because he was starting to lose weight, we decided to give Patrick a glass of Carnation Instant Breakfast, a.k.a. “chocolate milk” at bedtime. And his levels came back down and you could tell he was feeling better.

The idea at first was to give protein shakes by g-tube. Problems is, Patrick thinks it's super fun to drink from a syringe. So most "boluses" end up given like this.
The idea at first was to give protein shakes by g-tube. Problems is, Patrick thinks it’s super fun to drink from a syringe. So most “boluses” end up given like this.

Well, except that he had gotten into a habit of butting heads with his aide. I started having the teacher send home reports of Patrick’s behavior each day. With meds right, most days were better. But we still had some iffy days. And I started bribing Patrick with vanilla tootsie rolls to stay out of trouble at school.

I don’t know if that was why. She doesn’t say it was. But at Christmas break, Patrick’s aide quit and a new aide was hired. The new girl working with Patrick is young, but has a gentler touch and they seem to be getting along. Patrick has gotten a tootsie roll every day since she started. And since they have no potty training history, that problem is a distant memory.

In fact, we’ve shifted from regular accidents to waiting to let Patrick go to the bathroom. We were terrified that dairy was going to be bad for Patrick’s gut. It can be for other intestinal transplant patients. We were really told he’d never be allowed milk. But instead, since adding cheese (Patrick’s absolute favorite food to the exclusion of all other foods), Patrick’s gut has adapted better than we ever imagined.

It’s been a little bit of a difficult transition for Patrick. To go from chronic diarrhea to not. To have his belly feel full in the mornings. He wasn’t much of a breakfast eater before. But now some days it takes a lot of coaxing and imagination and bribery to get him to eat and allow his belly to wake up in the morning. He still does not love going to the potty. And we are often late in the morning as a result.

The biggest problem with this new problem is that it isn’t good for Patrick to refuse to eat. He has lost weight constantly since tube feeds were stopped. At first, it was a lot. He lost very quickly. We’ve been adding calories everywhere we can. Extra butter. Lots of cheese. (Lots, and lots…like 10-servings-a-day-lots). Switching to whole milk which is offered with every meal and also at bedtime. Allowing him to snack from the moment he comes home until an hour before dinner and then to snack again till bedtime, when I offer a “second dinner” if he wants it. I’ve tried “bolusing” extra calories when he refuses to eat. That means, using a syringe and gravity to give milk through the g-tube. But some days his belly is so full that it literally won’t flow in.

Some of the problem is oral aversion. With so many hours a day at school, I can’t really afford using dinners too much to teach Patrick to eat new foods and his repertoire of safe, familiar foods is very limited.

But some of the problem is just anatomy. I’m not sure we can afford to fit many more calories into his waking hours. If he doesn’t at least maintain his weight this month, we may have to go back to some tube feeding.

But that is the medical news. It’s what is turning my hairs grey and giving me wrinkles. But it’s only part of the story.

We had a wonderful Christmas. I feel so blessed to have had a quiet Christmas at home. We bought Patrick his first two-wheeler bike. He took to it immediately and, even with snow on the ground EVERY DAY since the week before Christmas, he has been riding it regularly. We took him out once or twice a day during Christmas break. Because he’s big enough for a 20 inch wheel, you have to jog to keep up with him. (Once we lose the ice, I’ll start riding along-side instead.)

But after a couple of weeks, he fell. It took a couple of times that he was terrified and refusing to ride before we realized that one training wheel was slightly loose and he didn’t feel as steady. So daddy tightened up the training wheel and we told him that he just needed his helmet and he’d feel brave again. That helmet is working like Dumbo’s feather. With it, though he’s not quite as fearless as he was at first, he’s back to flying around the neighborhood everytime the sidewalks are clear enough.

Another big thing that happened in December is that we got Patrick into a psychiatrist. Patrick’s been seeing a psychologist for a few years now. But a psychologist can’t write prescriptions. So, after much discussion and after seeing that Patrick was becoming medically stable enough, we decided it was time to try medication for his ADHD again. Stimulants like ritalin still aren’t an option. Not with their major side effect being appetite suppression. But his doctor suggested a drug called “Clonidine” for impulse control. It’s also used to treat high blood pressure, drug withdrawal, and anxiety. And the transplant team felt that it was an absolutely safe choice to start with. So Patrick’s therapist called a colleague and told him exactly what she wanted him to prescribe.

In December we started giving Patrick a “crumb” of clonidine before and after school. The change was profound. He started to be able to sit through some of church. He started to be able to stay focused on a game or toy that interested him. He calmed down at school. He didn’t have to be reminded to pay attention to his homework. The difference was night and day.

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Of course, it also decreased his blood pressure which made him so tired that he started to fall asleep by 6 p.m. So we had to adjust dosing times a little bit. Now he takes one quarter pill in the morning when he’s well-rested and it carries him through the school day. When I pick him up, he’s starting to get a bit “bouncy” and we let him stay that way. Afternoons are free play time in our house now so that he doesn’t get in trouble for the extra trouble with impulse control as easily. And then at dinner, he takes his second pill. It makes it so he can get through his homework in half an hour instead of 1 or 2 hours or more. And then he starts to get sleepy just on time for bed. And as long as he takes a nap to catch up on sleep on Saturday, this mostly work ok.

Feeling calmer, Patrick’s finally able to get back into more of the kid things that he has loved to do but couldn’t stick with before.

Our church schedule changed from 11 a.m. – 2 p.m. to 9 a.m. to noon. Since this is his very best time of day, and because he’s not distracted by being hungry, he’s able to go to his primary (children’s sunday school) class with an adult helper. (Who is amazing for him.) And then instead of hanging out at the back of the room oblivious to what is going on, he’s sitting with his class and much more engaged in learning.

They gave a challenge to the kids to memorize a verse of scripture last month. So I put a key portion of it on a piece of paper and he read it every day until he could recite it by memory. Then last week, he stood up and recited it in front of the other kids. He was SO proud of himself!

His reading is coming along. So is math. They’ve been teaching him how to use touch math for addition and he’s catching on and starting to believe me when I tell him, “You can be really good at math.” His writing is improving enough that he is handwriting most of his assignments. This can still be frustrating for him sometimes. And he still has a ways to go. But it’s getting better.

With his focus so much better, though, I can see how much memory still gets in his way. He really truly just forgets things. Especially names. PLEASE BE KIND if he asks you your name, even though he’s known you for his entire life and should be able to remember it. I’m beginning to believe that this is a trait of his brain injury. He still misses numbers when he’s counting. He still gets stumped on words I know he knows when he’s reading. And I think it’s a problem with recall that he can’t help.

That makes it all the more amazing that he’s succeeding at memorizing scripture. We’ve picked two more to work on this month. There are some very amazing and specific promises related to scripture study. Especially study of the Book of Mormon. And I have seen that EVERY time that we have used scripture to help Patrick work on a goal that we believe might be impossible because of his injury, I have seen him meet and exceed those goals. Those promises from the Lord are real and can work miracles.

Anyway – I have a lot more to catch you up on. And we have a lot of new milestones ahead of us this month. And so I’m going to end this lengthy post here for now with the hope that I’ll be able to fill in more later.

We are grateful to those of you who have helped us through these last few months. It is not easy to learn to eat, potty, read, write, add, attend school, attend church, make friends, control your temper, and pay attention all at once. I know I couldn’t teach it all myself. So thanks to those who’ve been there to help. And to listen and offer counsel when I’ve been discouraged.

Thanks to transplant, we have a lot of living and learning ahead of us. More than we hoped could be possible. And this has been a big growing season for us as we’ve come to realize that there is a path that lies ahead, and we have begun to try to learn to navigate it.

This parenthood thing.. it’s a lot harder than I ever imagined. It’s forcing me to become a better person than I knew I needed to become.

Transplant Day 180 and School

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This picture was taken 6 months ago at Pumpkin and Mustache Day in Patrick’s kindergarten class. I didn’t know it then, but the Halloween parade and party the next day would also be his last day of school.

6 months ago, I tucked him into bed and then I went and wrapped up his birthday presents and I went to bed, but before I fell asleep my phone rang and our lives changed forever.

I dare say, at least as far as I can judge right now, for the better.

Today, I had an IEP meeting with Patrick’s school. Can I tell you what an amazing school he is in? They were completely behind me asking for a slow transition back into regular school. In fact, they were good with just about everything I asked them to consider. This meeting was amazing!

Here’s the gist of things. There is a month left of school and Patrick’s immune suppression goals have been adjusted down because it’s been long enough since transplant to try. And the transplant team said that about this time we ought to consider starting to ease him back into the normal life that they did the transplant to hopefully give to him.

So, after a very thorough discussion today, the decision was made to start letting Patrick attend school for an hour each school day. He’ll attend the last hour of every day. He’ll spend the first half of that time working with a special education teacher to help him to make up as much ground as possible. And then he’ll spend the last half of the day with his kindergarten class so that he can work on relearning the classroom routine and social skills. Also, once a week, I’ll bring him in a little early so that he can spend time in occupational therapy as well rebuilding his strength, working on writing and other fine motor skills, practicing eating, and so forth.

Because he’ll only be in school part time, he’ll also still qualify to work with his in-home teacher.

And, when the school year is done, he’ll take a short break, and then get to participate in the extended school year (or summer school) program this year at another medical school that is actually even a bit closer to our home.

The mood in this meeting was so positive. I genuinely believe that this team is happy that Patrick gets to come back to school and eager to help him succeed in every way that they can. How many people come out of an IEP meeting saying that?

That doesn’t mean that his IEP meetings aren’t still intense. There is a lot to coordinate and I am constantly amazed at the efficiency with which they run these meetings. (Also, with their stamina to do so many back to back to back at this time of year. They had already done several that morning with several more to go.) We made plans for how to drop Patrick off and what to do if classmates are sick and an aide to be with him in the classroom and what physical activities he can participate in and what to do when he needs to stay home and how to make sure that he gets the absolute most bang for the buck out of his hour a day at school.

For the rest of this school year, they’ll be reimplementing the amazing IEP that they wrote for him the week of his transplant. Then we will reconvene in a month to figure out where he is on his goals and what the best plan for school next fall will be.

The most amazing part? I thought we’d be waiting a week or two more for medication changes but the team in Nebraska says that because he kept swinging too high, they brought his dose down and he’s already there. That doesn’t mean he’s not immunocompromised. But this is about the best it’s gonna get for a while and so we might as well let him live.

We are taking the next few days as a family to celebrate Patrick’s 6 month transplantiversary and half-birthday (because, face it, transplant is an awesome birthday gift but a sucky birthday party.)

And then on Monday, Patrick starts school.

I’m trying to wrap my mind around gathering all of the supplies, emergency plans, paperwork and other little details I need to have ready by Monday at 10:45 a.m. I’m hoping this is as good of an idea as it sounds. That he has the strength. That he can stay healthy.

It’s strange to think that a month ago, I answered a phone call and our lives stopped and reset.

And now, 6 months later..to the day.. we’re trying to kickstart life again.

Patrick is bouncing off the walls excited.

Transplant day 5

First of all, let me say that this was a much better day. Last night, right after I finished posting, the team came in and said that they felt it was time to mix up the pain medicine routine. Immediately, he became more himself. Also, right afterwards, respiratory therapy stopped by to start doing a treatment they call CPT. Unlike the mask that terrified Patrick, CPT is just like a great big massage. It put Patrick right to sleep.

It also told us that it was time for mommy to sleep in Patrick’s room. So, with Patrick asleep from his breathing treatment, I snuggled right up next to him and crashed. With pain under control, his oxygen saturation popped up to almost normal (though with oxygen running). Patrick and I slept snuggled all night. Since he is too sore to roll over and attach, he slept holding onto my ear. (That is sweeter than it sounds.)  And by morning, he’d found his voice again. We gave him a bath and put on a new hospital gown.

Physical therapy came by early in the morning and we decided that with him feeling better, it was time to try walking again. They fitted him with a child sized walker and away we went. Patrick was scared at first and just kept crying for mommy to save him. I just got down on my knees and cheered him on and pointed to the next landmark until we got him to where Daddy was waiting to hold him in the chair.

The rest of the morning was quiet. They tried a nebulizer. He hated it. They discontinued those orders (hooray.) I did laundry and made a few more phone calls to Patrick’s doctors and therapists to cancel his appointments and let them know where he’d gone.

And before i knew it, it was almost noon. Time for Brian to leave to catch his flight home. So we walked Patrick back to bed with still some tears, but a stronger body and more courage. Then kissed daddy goodbye and settled in for a nap.

Patrick was in a great mood after nap. I’d decided we needed to do something sitting up in bed to help his lungs clear this afternoon.. So I reached into the big box of trick-or-treat prizes and found a set of paints. Patrick was SO excited! We gathered up a too-large hospital gown and pulled up his table and away he went to work.

The nurse gave him a cup of water to rinse his brush in and he immediately tried to drink it. Patrick is desperate for a drink of water.  He was furious when I told him no. (Thanks to steroids and not feeling well, little tantrums are big explosions right now.).. But eventually accepted the little pink mouth moistener that his medical team had approved and his mouth looks and feels so much better.

Patrick’s transplant doctors stopped by to check on him this afternoon. Their jaws about hit the floor as they saw him today compared to yesterday, up in bed and playing. And that’s what he did for most of the rest of the day. We painted. We blew bubbles. We played with a harmonica. Child life sent a medical student to come make putty out of borax and glue. After changing his ostomy bag and taking a short nap, we got Patrick up one more time and walked him to the chair. This time he was pretty quick and made it with no tears. We sat in the chair and called grandma, then watched the new episode of Daniel Tiger, then walked him back to bed where he’s been playing with the cars he got for his birthday happily ever since.

We still had our hard moments. Beginning to understand having his ostomy has Patrick worried. It broke my heart when he apologized to the nurse that she’d had to clean him up when the bag leaked. And the tears over wanting a drink of water are heartbreaking. But these are big, big things that would upset anyone, big or small. And they won’t last forever.

Again, the kindness of family, friends and strangers has astounded us. Gifts and cards arrived at just the right times today.  It seemed that in all of the hard moments, something else would show up. Thank you, thank you for your generosity.

Transplant day 4

IMG_20141103_114027 IMG_20141103_164934Today was a hard day for Patrick. It seemed to start out ok. His nurse overnight did a great job keeping him comfortable. At 6 he was well rested and talkative, though a little sad. His nose was itchy and when he rubbed it, the cannula in his nose rubbed just enough to make it bleed.  His oxygen saturation was low, so we had to suction his nose, too, which is pretty awful for him. But, with Daddy cuddling, all was good for a few hours. Until they wanted him up to walk. That hurt.

When he got to the chair (about 2 feet away), he was sore and tired, but in good enough spirits that he dared work himself down into his favorite snuggly sleep position. That’s when the trouble started. Snuggling down made his oxygen saturation dip even lower. Soon, his nurse came back to suction his nose, really thoroughly this time. He was hysterical.  And, it didn’t help.

So they decided to call for a chest x-ray and his nurse had him walk back to his bed for it. He was already sore from fighting the suction and walking was agony.  But when he was done walking, he still had to sit up straight on the bed and have an x-ray taken. And I had to step out of the room while they did it.

Unfortunately, that x-ray showed that Patrick has gunk in his lungs and fluid buildup around his lungs. (They run a ton of extra fluid in the first couple of days after a transplant to make sure the veins stay open and happy so the graft will take… All that fluid has been just sitting in Patrick’s tissues and he was rather plump and sore this morning.)

They’d already started him on a medication to help him get rid of the fluid. They decided to order some medicine to help him cough. Patrick is refusing to cough. So they gave something IV and then brought a mask to administer a breathing treatment with.

That was the end. Patrick didn’t want a mask on his face. (I’m sure he’s seen enough of them in the OR.) He toughed it out the first few 10 second tries I did for him… But then he decided to fight… And when I tried to help hold him because he was fighting… Well, he lost it. Kicking, screaming, squirming, fighting with all his strength. This is amazing considering how little strength he has. But it surely left him worn out.

The breathing treatment didn’t work. They had to increase his oxygen several times to get things stable. Patrick was spent. He just sat there, not moving, not talking. I finally told the doctor that this wasn’t like him. We were going backward if he’d lost his words again.

They listened. They let him rest. They added some pain medications. They ordered a different kind of breathing treatment that just gently massages his sides to break up the junk in his lungs. And he has done better. He’s seeming calm. He’s slept a bit. His vital signs look a little bit better. And I’ve learned my lesson about letting them push him. Patrick is not one to be pushed.  Challenged, yes.. But not compelled. I won’t let tomorrow go this way.

The hardest thing about the day is how just plain sad Patrick was. Because it was Monday, we had a parade of people in and out all day introducing themselves: social work, ostomy team. nurse coordinators, child life, and on, and on. And all the while Patrick just sat there looking like he wanted to cry but with a firm determination he wasn’t going to cry in front of anyone. And anytime I tried to talk to him about it, either his oxygen saturation would drop or someone new would come in.

He’s figured out he has an ostomy. (Where the intestine is brought outside the abdomen in one spot and drains into a bag.) He needs this so they can monitor for rejection for a year. I’m sure he’s confused. But anytime I’d try to help explain, there was one more person. Always trying to cheer him up. Some days, you don’t want to be cheered up. Some days you need to cry.

I think the treatment plan is better now. I’ll spend the night in the room tonight to keep an eye on things and to help him feel comforted. Tomorrow is another day. (And hopefully a good one, as tomorrow Brian goes home to get what Patrick and I need to stay here for a while and I’m gonna be on my own.)

We did have some good things in the day. Brian made it to Walmart which means we have food and socks (only I packed socks in the hurry to leave) and slippers for Patrick and some other needs. We got a lot of answers to questions we’ve had from the people who came by and called.  I got time to get some of the e-mails and phone calls taken care of to tie up loose ends at home.

And in a very special bright spot, Patrick received 35 e-cards today. How amazing it was to read words of encouragement and support from friends and family and also from people we have never before met. I’ll admit, that is what got me through the moment today when my heart was breaking.

Thank you. Thank you!

Getting a line in and back on the transplant list

Sorry to have kept you waiting for updates. As you’ll see from this post, it’s been a crazy few days.

First of all, if you haven’t heard word any other way, the doctors in Nebraska were able to get a new central line into the Superior Vena Cava and Patrick is back on the transplant list. I mean to post updates but didn’t expect them to order bed rest and minimal activity for the next days after the procedure and, well, accomplishing that is kind of a full time job where Patrick is concerned.

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We checked in to pre-op at 5:30 a.m. which is 4:30 a.m. Mountain Time and we were all incredibly sleepy. Pre-op was the usual flurry of activity as we met anesthesiologists and got fluids ordered and labs drawn. (They had an amazing phlebotemist who managed to draw blood without Patrick even crying and on her first attempt.) We met the OR nurse whom Patrick loved so much he said she was “Kinda Jo”, in other words, put him at ease like his favorite child life specialist. He collected teddy bears and various and sundry medical equipment to use on the bears and charmed everyone in sight.

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Loving his warm blankets in pre-op

Then we got the meet the doctor and go over the plan.

The procedure it took to get us there absolutely terrifies me. I order to get around the blockages, they put a guidewire in through Patrick’s femoral vein and ran it up to his heart where they repositioned the veins in order to reach the right ones and get around the clotting and scarring. At least, that’s what I understood. He followed along with x-ray and ultrasound the entire way to make sure things went where they should.

What I really gathered from the description of the procedure is that it was insanely dangerous. As the interventional radiologist was going over the risks with us, I just kind of had to shut off the part of my brain that could process what those risks might mean and remind myself that without it, he had no long-term chance of survival. Instead, I honed in on the fact that he sounded confident in what he was doing and that, well, it just felt right. I couldn’t help but think that THIS was the reason we’d been impressed to transfer Patrick’s care to the University of Nebraska. Because they had doctors who had developed this technique to save access and save lives.

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Knowing how difficult Patrick’s access can be, we all kind of hunkered down expecting them to need hours. So, when we looked up at the status board after just a couple of hours and see that they were closing. Then, sure enough, there was the doctor telling us that everything had gone well and that he had a new line in place.

As we understand it, this is a rare direct superior vena cava line, entering the vein directly after going through soft tissue. (Patrick’s GI is questioning this, so I’m getting a copy of the procedure notes so I can go back over what was done and we can understand it.)

He went ahead and put in another double lumen line for us. Because they stock a different brand, the line they had was rather large, a 9 french, but that could kind of be a good thing. Should be less prone to clotting problems.

He also us that this line is to, under no circumstances, be taken out without his approval. If Patrick gets and infection, if the line breaks, if it clots, whatever… the team at the University of Nebraska needs to get involved. Maybe they will teach the team here how to keep the site open. Or, maybe they will fly us back out again. Whatever happens, they do not want to have to attempt to repeat this procedure. We were told that, next to transplant, this is one of the riskier and more specialized things that they do at their hospital.

Whew!

And by the end of the day, Patrick was back active on the transplant list.

The rest of the day was kind of crazy. Because of the risks of bleeding from that femoral access, Patrick was ordered to 3 hours of total bed rest with that leg completely immobilized. Knowing our child, we quickly agreed to request sedation for that.

At first, the sedation made things a little easier as we scrambled to attached fluids to the new line to keep it open. We also called to ask that his old line be removed while he was sedated (they’d left it in thinking it was still needed, but decided we didn’t need that to be done at home.)… and then scrambling to round up information about the new, different brand of line and repair kits, etc.

Patrick started to wake up just a little and was, well, cuddly. That’s normal for him, but normally I’m also allowed to hold him. This time, he had to stay in bed. So he settled for holding onto my head. For half an hour, he held my head as tightly as he possibly could. (Meanwhile, the doctor came back to pull the old line.)

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Patrick making his teddy bear play tablet while on forced, sedated bed rest

About an hour in, the nurse decided to stop giving him sedation and just let what was in his system and me distract him. So, we played games on the tablet and we checked the blood pressure of the teddy bear and tried out a Nintendo DS. Meanwhile, Brian went back to the Ronald McDonald House to bring back TPN and to try to meet our delivery of medical supplies.

2 hours in, the doctor said that Patrick could sit up in bed and make sure his leg was ok with the extra movement. The post-anesthesia nurse was kind of tired of him tying up the space in PACU I think (they could only keep giving him sedation there) and so she discharged us to their extended care unit.

The extended care nurse acted as though she hadn’t received report from the PACU nurse, though. When we got there, she tried to insist that Patrick needed to stay lying still in bed for another hour because that’s what the orders in the computer said. And so, well, yes, I went a little angry mama bear on her and told her that I would not have agreed to come to her unit had those been the instructions.

And then we spent the next half an hour trying to keep Patrick still sitting up in bed, doing crafts, sipping water, and not chewing on or removing the COMPLETELY inappropriate non-pediatric pulse oximeter on his finger.

And then, I don’t know who talked to her, but the nurse came back in and cheerfully told us we could get Patrick dressed and he could be discharged. Like the nurse who I’d gone crazy on didn’t even exist.

Anyway, we were grateful for the dismissal as we had managed to squeeze in an appointment with one of the transplant surgeons at 1 p.m. and 1 p.m. is when Patrick was supposed to be cleared after 3 hours’ bed rest.

So, we hurried over to the Intestinal Rehab Clinic and checked in for our visit and a little while later, Dr. Langnas joined us. We explained to him our concerns about whether or not waiting for a combined liver/intestine transplant might be increasing Patrick’s wait time. He listened to our concerns and then explained the benefits that he sees for Patrick in the liver listing. Then he promised us a future date where, if Patrick has not received a transplant, he will take our concerns back to the transplant review board for reconsideration.

The rest of the day we spent trying to help keep Patrick down. We went back to the Ronald McDonald house again for a little back and let Patrick play in the playroom. Then, in the interest of some forced holding still, took a drive instead. Patrick heard us mention the temple as a possible destination and voted for that. So, with our bruised and bandaged and druggy little boy, we went and visited the Mormon Trail Center and Winter Quarters Temple grounds. Then came back on time for a yummy lasagna dinner courtesy some generous Ronny House graduates, then went to bed early and exhausted.

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Playing pioneer at the Mormon Trail Center

After tucking Patrick into bed, it hit me just how serious what he’d been through that day and week really was. Another case of him surviving against the odds, an unquestionable miracle. And a VERY close call. I shed a few tears of fear and relief that night, said a prayer of gratitude, and went to bed.