Tag Archives: anoxic brain injury

Lots of appointments and planning a new normal

School starts on August 19th. My goal in this month prior to school is to help Patrick work up to a school year normal.

Therapy

That means a few things. First, it means restarting outpatient therapy. I took Patrick back to his occupational therapist a month ago. She was so excited to have him back and eager to start working with him on writing and an learning to manage his sensory processing disorder with a new “sensory diet.” (Since transplant, Patrick’s not nearly as controlled by his sensory seeking behaviors. But that doesn’t mean they’ve gone away. However, he’s a lot more tired so the big physical play that used to help focus wears him out fast now.)

The bad news, though, is that Primary Children’s lost a couple of therapists this summer. They have hired a bunch of new ones. But that means that the veterans are very busy with the transition. Patrick’s beloved therapist just doesn’t have time in her schedule to do the weekly therapist that Patrick seems to need right now. However, she’s been shadowed by another therapist in the couple of visits we went to. And so we transferred care, at least temporarily, to a new occupational therapist.

We also agreed to move back to the Taylorsville Clinic. (I have had some bad experiences with the office staff at that clinic and had decided not to keep going there.) Because it shares space with an instacare, Patrick has to wear a mask on the way in and can’t wait in the waiting room. However, it’s closer to home, has a bigger, cleaner gym.  And we were able to basically pick our time on their lightest day.

Our first session went pretty well. His therapist picked up on all the tools we use to keep Patrick on track: a clear schedule, verbal cues, deep breathing, etc. and I think he was calmer for her than has been his usual. The other nice thing is that I think we can pull off going to therapy at 8 a.m. on Mondays to let him get ready for the week at school.

I’ve scheduled evaluations so he can restart speech and physical therapies, too. And he’ll have his last home health feeding therapy session this week.

Evaluation

Also, to get ready for school, we started a new neuropsychological evaluation. Patrick was SO young last time he was tested. And we know that having a healthy gut has changed a lot of things for him. His sensory processing, focus, and other quirkiness is actually a lot less since transplant, even though he’s having a hard time with sitting still, speaking quietly, and controlling his temper. It seemed like a good time to get a new look at his abilities.

So we did an intake interview and in the first few weeks of school, Patrick will be pulled out for 3 half days so I can take him for some testing. Hopefully it helps.

As I mentioned before, we’re working on a behavior plan, too, with his psychologist.. hoping to have him used to a specific set of consequences and rewards that they can use in class. He always does best in class away from me, anyway.

Transplant follow-up appointment & diet changes

We saw Patrick’s GI, Dr. J this week. It was a long appointment. For one thing, I needed Dr. J to sign all new orders for school again. It’s getting smaller each time, though. This time around was only 8 signatures and 6 pages. Compared to 20 the first year, that’s big improvement.

Patrick weighed in at 24 kilos. That’s just under 53 pounds, and up 3 pounds in the past 3 weeks. They had a new dietitian this time and she pointed out that since Patrick’s eating meats (even if they are just hot dogs, hamburgers and lunch meat) he might be eating enough protein to not need as much formula at night. Dr. J was really concerned about Patrick’s 96% BMI and rapid weight gain. He said we need to get Patrick on a regular meal and snack schedule. And he said we should consider doing less “feeding while he is unconscious.”

So, I ran this all past the dietitian in Nebraska. And she made another reduction in Patrick’s formula feeding. I’m supposed to be keeping a log of everything he eats for the next 3 days so she can evaluate what he’s getting and we can start talking about a plan for all oral eating.

I’m not sure if this means needing to add other foods to his diet. Patrick doesn’t really absorb vegetables well. (Dr. J. says they are “just wood” anyway if you don’t have a colon to break them down in.) He can’t eat fruits. So he’ll need vitamin supplements at least.

Allergies

We also saw Patrick’s allergist, Dr. G, today. For years, every time we went to the allergist, he’d say that we’d need to do a whole new workup after transplant when Patrick was ready to eat. Well, Patrick seems to be more than willing to eat. And so it’s important to figure out what exactly he is allergic to. This is kind of tricky with immune suppression because the same drugs that suppress Patrick’s immune system also suppress his allergic reactions. This is good news. But it means that we don’t really know what the potential for allergies is.

So that was today’s goal. Figure out what Patrick might be allergic to. Allergist appointments are always long. Like, crazy long. We were there three and a half hours today. For an hour, we updated Patrick’s medical chart and gave history to a resident. (Which, in summer especially, is a bit like training a new resident.) And then Patrick’s allergist came in and went over possible allergens. I went through a list of things we could test for an highlighted the things I think Patrick might be allergic to. Then the doctor highlighted the things he thought from past test results Patrick might be allergic to. Plus other foods that he thought it would be good for Patrick to try to eat. We tested for just under 40 possible allergens in all. That was all that would fit on his back.

Some of the results were predictable. Cashews and pistachios, off the chart. Eggs still in a big danger zone. Oats were much higher than expected. And I highlighted peaches, oranges, and strawberries because I’ve had my suspicions. They were very surprised when some of those rare things came up positive. We had other positives for foods that rarely to never cause reactions, like tomatoes and wheat. These could be just because they are a big part of Patrick’s diet and not that he can’t safely eat them. Really, all testing done so far, we don’t know almost as much as we did going it.

Nuts, both tree nuts and peanuts, are still a HUGE no for Patrick. We are still a nut-free house, for sure. So are eggs, peaches, corn, oats. However, he tested negative for cow’s milk, which was a very big surprise. (You can outgrow milk allergies but a year ago, Patrick wasn’t anywhere close to that.)

So the next step is to do a blood test. That will test for a different type of reaction. If the negatives in the scratch test match up with negatives in the blood test, we’ll do a food challenge. (For example, offer Patrick cheese.) If positives match up with positives, then we’ll talk about a strategy to keep Patrick safe but eating as much as possible. They will not be likely to stop him from eating foods that he is currently eating without reactions. He might have become desensitized and we wouldn’t want to reverse that by taking something back out of his diet. But time and testing and trial and error will decide. And if the results conflict, meaning if one is positive and one negative, we’ll probably test again.

This is sounding confusing as I’m writing it. It doesn’t change much of what we have been doing. Just helps us try to figure out how to help Patrick eat as much as possible and keep him safe. Meanwhile, we refilled his epi and got correct dosing on his antihistimines and requested a new letter for school. And we got things started.

Patrick was a champion. It was a long appointment and he was very scared. And yet, he was very patient and helpful. He crashed in exhaustion on the way home.

Choosing a school

Enough medical updates though. I have other news. We also have been planning for school by talking to the school district. I had a meeting yesterday with a couple of district representatives (I was being transitioned from one representative to another because of some restructuring). The goal of the meeting was to finally pick a school placement for Patrick. And I did finally make a decision.

Everyone who has spent time working with Patrick: his home hospital teacher, his summer school teacher, his psychologist and group therapy leader.. they all say that he needs to be in a higher functioning self-contained classroom this year. In a regular class, he’d walk all over the teacher and never get anything done. In a low functioning class, he’d gravitate to the classroom staff and not make friends or learn to work independently. And in either, he’d get bored and then get naughty.

But, as I’ve written before, I was uncomfortable with the classroom that he’d go to by default because of our address. Well, a little over a week ago I got brave enough to ask if there were any other classrooms like that one in other schools. Since, after all, I drive Patrick to school anyway.

It turns out, there are several. And the closest to my home happens to be in the town where I grew up. Across the street from my grandpa’s house. And 5 minutes away from Patrick’s therapy office.

All of a sudden, things seemed to fall into place. The class is indoors. It has fewer students. The teacher has a pretty good reputation. And, even though it’s far from home, that family connection will make it feel like Patrick isn’t going to school far away. It isn’t farther from the other school. And it’s in a place I know. I know the neighborhood. If he made friends and wanted to play after school, I could do that. Grandparents, aunts and uncles all live nearby to help respond when he’s sick. Patrick could even, in theory, choose to walk to his grandpa’s instead of me picking him up. Eventually. Once we’re sure he will actually go there when given a chance.

The district folks seemed to think they’d even be open and excited to have me volunteer in the school. (They have a high hispanic population. It sounds like I can use my talents to help.)

I’m a nervous wreck still. All of a sudden being away from Patrick from 9 to 3:45 every day after all this time together sounds terrifying. I wonder if he’ll make friends. I worry because I don’t know ANY of the staff here. Losing my district rep means that EVERYONE will be brand new to me. And I don’t know what writing an IEP and trying to request accommodations is going to be like. And I’m coming in with a very long wish list that I expect them to take care of.

Also, unlike some other places I’ve looked at… this is a very normal school. No big special needs programs. Just two small little special needs units.

And – I still have to make plans for safe lunch AND breakfast in the classroom. Though with only a handful of students, that should be more doable.

To make things worse, I didn’t bother looking up a school calendar until last week. Our district starts the same week of the year every year and I made plans for that. Only THIS YEAR they decided to change things and start a week early. Which means that instead of having a full week to make plans with a new school like I thought, I’ll have just 2 days. 2 days! To give medical training. To make an allergy plan. To make a behavior plan. To orient a whole new team to our family.

I am overwhelmed and scared. A LOT.

We are going to register tomorrow regardless.

Kindergarten – untraditionally

It’s a quiet snowy afternoon and seems like time for an update. This is a busy week comparatively for us. With spring break over, Patrick’s back to a regular schedule with his home hospital school. In this district, they have assigned him a teacher for 2 hours a week. She comes one day a week on Tuesday afternoon and stays and works for 2 hours.

When I heard that schedule I was actually really upset. We had 3 hours a week scheduled as 3 one-hour sessions when we were in Nebraska. Patrick rarely stayed on task for the whole hour. We often didn’t get all 3 sessions in. And I really wondered if this schedule could possibly work.

I would never have expected how well this would work. Ms. Emily is a special education teacher in a “behavioral” classroom in another elementary school in the district. That means that it’s no longer just me with strategies to keep Patrick on task. His teacher is really good at finding a balance between pushing him to do hard things and finding ways to turn breaks into educational opportunities or “teaching play.” It’s teaching Patrick to ask for a break when he feels overwhelmed or frustrated and that is a skill that will go a long way for him.

I really worried about the long sessions, but she’s good at keeping a variety. Patrick earns the chance to play educational games on her iPad when when he completes more challenging work and that seems to make the time pass. (And gives us moments where she stops and teaches me ways to work on the same skills at home.)

I think the best thing, though, is that she is bringing me tools that actually are helping me to make good use of the time I spend teaching Patrick. Not that I wasn’t doing my best before. Thank goodness for the resources of the internet or Patrick would have been much further behind. But there is something to be said for materials prepared by a professional educator for your child’s needs.

For example, she brought me a stack of sight word flashcards. They are printed on goldenrod yellow paper which she says is the color our minds learn best reading from. Patrick was pretty resistant to these when she first used them to try to test his knowledge. But she started to plant the idea of sounding out words to him and pointed out a few sight words that he could use that skill on. Patrick and I sat down that week to run through the cards and before I knew it, Patrick was figuring out words by sounding them out, and asking me for more cards to work with.

He is practicing with about 20 sight words cards right now, most of which he’s mastered at a glance. As he gets good at these, we just add a few more in at a time and soon he’ll have that whole stack memorized. She added to that showing me how to use some touch prompts on his arm to help him sound out and blend words together and he’s really starting to be good at reading most any CVC word, new or not.

In the same session, she gave me a stack of worksheets that she’d cut out of a handwriting notebook. And two plastic page protectors. I really doubted this one… but as it turns out, Patrick is totally in love with this particular workbook. I looked online to just get a copy of it and it’s about $100 off the shelf. Basically, it’s pages where he practices tracing numbers. But it has just the right mix of activities that catches his interest. Trace a number 6 times and then practice drawing that many pictures of a totally simple object for a kid to draw, for example. Who knew Patrick would love drawing suns and balloons and candy canes? And on the other side? We practice counting and patterning. I really need to make it to a teaching supply store and get some tanagrams and counters to match the workbook.. But he doesn’t seem notice they’re missing so far.

This work has been reinforced by another little bonus this school district threw in. To honor Patrick’s IEP, they send an occupational therapist out to work with him for 20 minutes a week. 20 minute, again, sounds like nothing. I feel bad for the therapist who devotes 2 times as much driving as she spends teaching. But her support in handwriting and other fine motor activities has taught us a few helpful things like labeling the lines on Patrick’s page with sky, flowers and grass that help him fit his writing within the lines. And because the therapist comes from the school he used to attend, she brings along familiar things that he worked with before that really make him happy and willing to work.

The grand sum total of this is that instead of spending time hunting for curriculum for Patrick, I’m given tools to work with and all the time that I can fit in for school work is spent working and Patrick’s making good gains.

The more I see how things are being done right here, the more convinced I am that things were done very, very wrongly by Omaha Public Schools. Patrick’s teacher was a sweetheart who really meant well. But I’m certain that several of the rules governing special education were broken. I can tell you I certainly will do things differently if I ever have to work with that school district again.

The upside is that things are good here. It’s still a struggle. Patrick is a little bit TV addicted right now and he isn’t always happy when I pull him away to work. But only at first. He’s always happy once we get started.

And we especially struggle on the days that Patrick doesn’t feel as well. We finally finished the 2 week course of antibiotics. It is so nice to only have to get up to refill formula, not to wake up and stay awake to try to give antibiotics. It took a few days to get Patrick past the insomnia that giving him Benadryl every time he woke up was causing. But finally, the family is getting a little better sleep and that helps all of us do better.

Sadly, though, allergy season hit just as Patrick came off of the Benadryl. He had some hayfever symptoms those first couple of days. Or at least, that’s what we thought was going on. Two evenings ago, Patrick started to sound stuffy, too. By yesterday morning, he was sounding pretty congested. Of course, there was also this massive wind-storm that came through and I thought that was to blame. Then, overnight, it snowed. 6 inches. It has snowed all day today. And Patrick isn’t breathing better with the air cleared out.

We had an appointment with his GI and an intro appointment with the liver transplant clinic today, too. I took him, masked. And his doctor thinks this is likely a virus.. so far, he doesn’t think it’s anything overly concerning. (Though I guess we are watching in case his immune suppression causes a latent virus in his body to get worse. But they don’t think that’s it. It’s more likely he caught something over the weekend when we splurged a bit to spend time with family.) Anyway – so far, we are just supposed to keep a watchful eye. Patrick isn’t horribly sick or getting worse. He’s not running fevers. His oxygenation isn’t the best while he sleeps, but humidifiers seem to help with that. And he sounds pretty cute when his little voice gets croaky and cuts out.

Otherwise, it was a productive appointment. It is actually kind of comforting to know that Patrick’s been assigned a transplant nurse coordinator here in town who can get us a doctor quickly is Patrick needed things. They’ll also be watching Patrick’s weekly labs and making phone calls to doctors, the Nebraska transplant team, and us if anything looks off.

Dr. Jackson and I talked about getting orders in place for Patrick to be able to go back to school part-time. He needs to write a letter summarizing what Patrick’s medical and nursing needs will be as he goes back to school. So we talked about my goals and how what he wrote could help with those. He said would recommend for nursing support for Patrick because, as he put it, a multivisceral transplant makes him “one of the most complex patients in the valley.” I wonder how the district will interpret this. I’ve been trying to get an appointment to talk about and plan for Patrick to transition back to school and need this doctor’s letter first because the district trying to figure out what services he needs to attend school and where he’ll go that those can be offered.

Anyway – in brief summary, this is what the school year is looking at right now at our house.

With a lot of Bob the Builder in the background. Patrick rediscovered Bob the Builder this week. He is thrilled to find that he already owns Bob the Builder toys. He doesn’t remember this was his favorite show when he was 2.

I’m trying to figure out how to make Bob the Builder do math. Surely that would increase the incentive and willingness to work at it. Patrick hates math because counting is boring. (And hard in the midst of his ADHD and brain injury.)

Oh, P.S. As I cleaned off my car this morning, I was pretty sure that that much snow overnight would have shut down Nebraska school. Kudos to Utahns for being hard-core in all sorts of weather.

Baby steps

I mentioned a while back that we were taking Patrick to see a doctor who specialized in rehabilitation and development. It’s about time I write about it.

The appointment went a lot more positively than I’d expected. I went in half expecting for her to see the muscle tone in Patrick’s foot and decide it was time for dramatic action. Patrick’s physical therapist had suggested botox injections and casting, and I was afraid that that was the next step.

I was so nervous, in fact, that I had Brian come along with me. That wasn’t the sort of decision I wanted to make alone. And he was kind enough to take the whole day off, which was an extra special treat.

They make you feel out a history every time you go into this office, including a list of everything that’s changed in the last 6 months since you were seen. This can be quite the task to list everything and I often just write blanket statements like “typical to short gut” so I don’t have to fill in all the hospitalizations, diet changes, etc.

The good thing about this form, though, is that it gives the doctor an idea of where to start, so she came in and right away said, “So why do you think he’s having problems with his foot?” We stripped Patrick down so she could see his muscles as he walked and then we had him walk back and forth between us. We also talked about the developmental lag I’ve seen on his right side versus his left. She watched the way he hold his hands when relaxed. She stretched his muscles to see how they move.

In the end, we didn’t decide anything new… but she confirmed a lot of things I’ve suspected. Basically, it looks as though there was some degree of brain damage caused by Patrick’s cardiac arrest. This isn’t a surprise. They did CPR for 15 minutes, which means that for 15 minutes, he didn’t have a good supply of oxygen to his brain. In fact, everyone’s always amazed at just how well he IS doing in spite of that.

This doctor, even telling me that there seems to have been damage, still calls him a miracle and says that he is far, far healthier than his medical history would predict.

The official diagnosis she gave is “dystonia”… which basically means “irregular muscle tone.” In layman’s terms, it means that his brain sends the message to move the muscle, but the message gets garbled somewhere along the way. The message the foot get tells the muscles to flex harder than they should or in the wrong direction. The faster he tries to go, the more the signal gets confused and the more unpredictable the movements.

She said to just keep working with him. She said that these muscle tone issues could vary in how much they affect him as he grows and the muscles relax or get tighter. In the future, they might still recommend injections of botox into the muscles to weaken them so he can have better control of them. But that’s not for now.

For now, we’ll continue to do what we’ve been doing. We’ll keep a brace on his foot and we’ll do stretches every morning and night. We’ll keep encouraging him to walk wherever he goes and we’ll hope that, like the rest of his right side movements, he’ll get better with practice so that you don’t even notice a difference unless you know what you’re watching for.

It’s a relief to have my suspicions confirmed and plan of action approved. For the past year I’ve been telling therapists that I suspected something was wrong. It’s only been since we started working on walking with his newest PT that it’s been clear that something actually was wrong.

It’s discouraging, though, too to know that he’s going to have this battle ahead of him. He’s young enough that his brain is very “plastic”, very adaptable and it is possible for him to overcome most of the effects of this… But it’s going to require a lot more effort from him and from me to learn to do those basic things.

Still, he’s making amazing progress with his “boot”. He spent 15 minutes yesterday walking 6 feet between his therapist and myself. Then, he spent most of the evening walking across my mother’s living room. He lets go when he’s playing next to furniture. He refuses to have two hands held while he walks. He is getting faster and steadier and braver. He’ll be walking in no time.

How everything changed in a moment

WARNING: THIS POST INCLUDES DETAILS OF PATRICK’S CARDIAC ARREST AND SUBSEQUENT PROBLEMS IN THE ICU, INCLUDING PICTURES.

I’ve been asked to explain several times the events of this week. I’ve decided it’s probably easiest if I just take some time to sit down and write this in a blog. It will save frequent emotional repetitions for me… preserve some of the last week while it’s still fresh in my mind… and hopefully give some answers for those who are wondering how things got to where they are. These are things that are still hard for me to remember and talk about so please don’t be hurt if I don’t want to talk more about what I’m posting in this entry.

In my last post, I wrote about a yeast infection called candida that Patrick had in his central line and in his blood. He was hospitalized for 11 days in June for that infection and then went home on antifungal medications. On July 5th his fever returned and we came back to the hospital to learn that the infection had grown back again.

In order to treat the persistent infection, they decided to return to giving him a very dangerous medication called amphotericin (a.k.a. “ampho-terrible”). He was on a very high dose but seemed to be doing ok. He always got chills while it was being given and wanted to be held and held very still, but all other signs pointed towards it doing it’s job without too much problem.

On the 15th, we were making plans to go home. We would give 3 more weeks of treatment at home to make sure the infection didn’t come back. However, before we went home, we decided to try giving the medication the same way he’d get it there. This meant shutting off his TPN (IV nutrition) for a few hours while the medicine was being administered.

He’d been doing so well that I ran home to shower and take care of a few things right before they were supposed to start the ampho. I got back an hour into it and he just didn’t seem to be tolerating it well. His hands were as cold as ice, despite several blankets and heatpacks. He was pretty restless. We tried to feed him to comfort him, but that just make him sicker.

About 3:30 p.m. he got really agitated and started to squirm and pull at his ears and cry. Then he just went limp. I called his nurse in and she called in one of the charge nurses. They took him from me and started administering CPR.

They also hit a button on the wall that pages for a “Code Blue” on the PA system. In under a minute the room was filled with people. A PCT who had cared for Patrick before came immediately to my side, as did a social worker and they stayed with me until we were delivered into the hands of another social worker in the PICU.

One doctor took charge of calling out orders while another kept track of everything that had been done. There were at least 10 people bedside helping with CPR, medications, watching vitals and I don’t know what else.

After about 15 minutes (a.k.a. an eternity) they finally revived him and they took Patrick straight to the Pediatric ICU. I followed with the social workers and his nurses in another elevator.

On the way up I finally got a hold of Brian and told him to come up and where to find us.

Normally parents are taken to a waiting room, but they knew us and how involved we are with Patrick’s care so they let us stay and watch as they placed an arterial line to monitor his blood pressure and worked to find out what happened.

The best guess is that his weakened little body was hit with a few things at once. Being off his TPN caused his blood sugar to drop. At the same time, his weakened kidneys weren’t processing potassium in the right way. When those two things hit at the same time, it created a sort of perfect storm that caused him to seize and caused his heart to stop.The next day they worked madly to stabilize him. His organs had been starved for oxygen for long enough that they’d forgotten how to work. His blood sugar was all over the charts. His potassium levels were out of control. He was anemic and his platelet count just kept dropping. His nurse that day didn’t sit down for the entire 12 hour shift.

Over the next few days things started to stabilize but there were a lot of things out of whack still. His spleen, which had already been in bad shape because of his cholestasis (liver damage) and prolonged infection, decided to protect itself by sequestering all the platelets that went through it. As a result, although they were giving multiple transfusions, his platelet count was still low and he was bleeding easily from anywhere that could bleed. His kidneys also had kind of shut down and so all of the extra fluids being poured in to give transfusions and electolytes and medicines weren’t being cleared by his body. Instead they were soaking through the veins and collecting in the other tissues of his body.

To top it all off, he had some bacteria “leak” from his gut and get into his bloodstream causing a bacterial blood infection.

Saturday they tried to extubate him, but by Sunday morning it was pretty obvious that he was having trouble breathing. X-rays showed that the fluid in his tissues had made it’s way into his lungs. And so they had to put him back on the ventilator and started to give him medicines to make his body shed the extra fluid.

We watched and prayed and waited and tried to get ready to say goodbye until Wednesday when something amazing happened. Patrick peeked at me through heavy eyelids and seemed to know that I was there… He started reaching with his hands and so I gave him a rattle… and he shook it! The next day I was actually able to get him to laugh!

As the day went on, he woke up little by little and started to play peek-a-boo and smile and hold toys. His X-rays and labwork improved. As he woke up, they started to wean him slowly off the ventilator and off the sedatives.

His throat was very swollen and we weren’t sure if the airway would stay open without the tube in. But Friday evening they decided the only way to know would be to try. So they took him off the ventilator and put him on high flow oxygen. And he was the happiest kid you could imagine.

Without the breathing tube to bother him, they were able to turn off his sedatives and we became aware of what might be another problem. We noticed as Patrick started waking up that he wasn’t focusing his eyes well… staring off into space and not always following what’s going on in the room. He’s also been holding his head and arms very still. When these issues didn’t go away when the sedatives started wearing off, we became more concerned.

Neuro came to see him and said that they think there is reason to evaluate him. He will have an MRI on Monday as well as a neurodevelopmental workup. There is a possibility, especially considering how long he was down, that Patrick’s brain was damaged. Neuro will be able to help us see if that is true… and if it is, they’ll help us do all we can to help him do the best that he can.

Regardless of how weak his body is, though… the spirit inside of it is still Patrick’s. His eyes still sparkles and he loves to play and laugh with us. It has been a gift to be able to hold him and play with him again… to know he knows us and loves us still. It breaks our hearts to see that magnificent spirit confined by such a weak little body and we hope that those limitations will be brief.

As far as long term planning- Patrick will need to stay in the ICU until he is better able to breathe on his own. He is doing it right now, but he is working very hard at it. He’s on hold for transplant until he can go back to Seattle for another evaluation. At the very least, he will probably now need a liver transplant along with the small bowel transplant. We won’t know if he’s still healthy enough for transplant, though, until he is evaluated again. We’ll continue working with the doctors and therapists and nurses here to help Patrick regain as much as he can. And the rest we’ll leave in the Lord’s hands.

We’ve always known that there was a plan for Patrick’s life. We’re just humbled to get to be the parents in that plan. We trust Heavenly Father to take care of the rest.