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A few months ago we discovered that the Smith’s Food and Drug between Patrick’s school and our house has child size shopping carts available between their customer service desk. Now, at every opportunity, that’s where we do our shopping.

He loves the independence and is getting better at not taking everything off of the shelf or running away.

I find it exhausting, but he is happy and very cute with his little shopping cart. And, hey, it means he will happily agree to a shopping trip.

So long as we go in off-peak hours and have a short shopping list.

It’s been a crazy busy week with a line infection and hospitalization, results from our month of neuropsychology testing, a fun like a trip to the aquarium and a brand new tricycle.

But – I’m holding it all in for a few more days because it’s that time of year again where we decide if COTA should renew this website and, well, it came along at the same time when I had an itch to change blog platforms.

So bear with me and keep an eye out. We’ve already set up a new domain name ofwww.patrickhoopes.com and right now, if you go to that page, it’ll redirect you here. BUT in a few days here, maybe a couple of weeks at most I hope, you’ll see a new and updated website and this one will go away.

I’m putting my hubby to work finding a way to get the new blog to still e-mail you updates when I post. We are planning to move our subscriber list. I’ll do some research into RSS feeds. And I’ll try to post it all here in the next couple of days so you don’t lose us.

But write it down now, just in case the unexpected happens.

I’m giving up on trying to catch up on the blog. The long and stort story of the past 2 months is that Patrick is out of school. He does not like playing home alone all by himself. And so, we are being Summer Explorers. Every day, we pick a theme. I have about 200 pinterest pages of different themed ideas to keep us busy. Some days it’s crafts. Some days it’s field trips. Sometimes books. And on and on.

Plus, we are seeing 3 therapists every other week, and doctors, and are going to weekly mommy and me exercise classes and story times at the library.. and I’ve signed up him for Kindermusik playdates. We are trying not to get bored.

We spent a week learning to explore, a week on things in the sky and another on things in the water. This week, we finally made it to earth and the topic yesterday was firemen.

So we baked cookies and made a thank you card to take to our local fire station. Then the TPN delivery was late and we ran out of time.

So we got up this morning to deliver them anyway. The firemen were so kind. (And their dog so little and fluffy and cute!) They gave Patrick hats and a pencil and a trick or treat bag just because. Then, because the fire truck was out, they gave him a tour of the ambulance. He thought it was big and scary, but very cool with LOTS of neat doors.

Thank you fire fighters.

Today, since yesterday spilled over, we are talking about jobs. We went to the grocery store and met a butcher and a baker.

And now naptime is over. So this post will be too.

It’s very strange to be treating an infection at home from the start. Besides the obvious life-saving stabilization that being admitted for the first few days of an infection brings, there is also some matters of business that get sorted out during the admission.

Instead, we are sorting them out at home. And Brian and I are playing the role of nurse and interns in this case.

See, a lot of the treatment of a line infection is in lab results. So you identify the bacteria and choose which antibiotic it is sensitive to. And then you monitor how Patrick’s body is metabolizing the antibiotic to make sure that it is within therapeutic levels. (Enough to kill the bugs, without causing harm to his body.) The rest of the hospital admission is sitting around trying to make sure that the nurses and doctors don’t mess up our good medical routine. And trying to keep Patrick from going completely crazy.

So, instead, we are home, without nurses and interns to watch out for. The 2nd day of treatment was eerily quiet and calm because Patrick was feeling so mellow from all the medicine. He just sat (or layed) on the stairs for most of the day. And I gave 3 doses of antibiotics.

But we do have to make sure that the correct labs are being drawn at the correct times. (Which is sometimes 6 a.m. and sometimes 11 p.m., and very rarely, right in the middle of the day.) And we have to make sure the medication stays exactly on schedule so the results will be acurate.

Amazingly, I’ve been able to convince all the nurses who have come to just let me draw the blood samples that they need. This is nice because I don’t have to worry about if they are treating his line gently enough, or if they’ll wake him, or if they made a mistake.. Because I’m the one doing all of it. But it’s a little bit strange to be doing all of it. (Please note, I don’t know what I’m doing and wouldn’t do this without nurse supervision. They tell me what I need to do, and exactly how. And then they put it in the proper tubes, get it to the lab, and follow up on the results.)

We have a lot of phone calls setting up nurse visits, going over lab results, adjusting medications, and scheduling deliveries of new medications.

And inbetween, things are a kind of quiet anarchy. Patrick is wiped out yet again by the benadryl pretreatment. He’s wired one minute, and crying in exhaustion the next. The medication schedule we’re on is good in that there are no middle of the night doses due. (I stay up till 11 p.m., then get up again at 6:30 a.m.). But every time he wakes up, I’m giving him another dose of Benadryl and turning on the antibiotic that makes his belly sick.

We still are very confused as to what we’re treating. For that one day, Patrick had me a little concerned and watchful. But he has never been really sick.

The blood cultures came back with one positive test for a strain of streptococcus A (not strep throat, just something in a similar family.) The first set of tests didn’t come up with a good antibiotic to treat it with. It was resistant to just about everything. And then, a few days later, the other side of his line grew a staph infection similar to the one we just finished treating.

Neither result was very conclusive, and a few days later, the cultures that were drawn again so far haven’t grown out any bacteria.

The lab is rerunning their tests to try to figure out how to treat the first bacteria that grew. And we’re debating whether or not the second one was an infection or a lab contaminant.

So maybe there’s no infection at all. Or maybe Patrick’s body and the use of ethanol locks killed off the initial infection. Or maybe he has a very serious, drug resistant infection. Or an infection that we aren’t able to kill without removing this line. We honestly don’t know at this point.

What we do know is that we can’t quite seem to get the levels of his antibiotic right, so we keep adjusting doses. Which means we keep waiting a day, and checking the levels again. Usually by sneaking into his room with a nurse in the middle of the night.

A strange nurse. Because through some freaky circumstance, the day Patrick got sick, his usual nurse got a call from her kids school saying they’d be diagnosed with whooping cough! They’re immunized! She’s a nurse! But she had to go into quarantine for 4 days with her family.

Thank goodness she still loves us to be consulting with me on the phone about all of this. And thank goodness for Patrick’s amazing GI who just includes us in the team.

He said to me the other day, “Sure, it’s possible that we just have false positive cultures. But your instinct said something was wrong. And we have to take that seriously.”

So yes, we’re sleep deprived. We’re a bit scattered trying to juggle logistics. And Patrick and I are both more than a little tired of the side effects of his treatment. And Brian’s been sick, to boot.

But we are incredibly grateful to be home and hoping that Monday morning (Or at least Tuesday) will bring answers and a clear treatment plan so we can move on to the funner things we have on the horizon.

Patrick and our family have been watched out for this week, and especially today. Patrick finished his course of antibiotics about a week and a half ago. But I just couldn’t shake the feeling that we needed to be watchful.

Last Friday, he a really bad night’s sleep. His g-tube got caught on the side of his bed. He had a horrible diaper rash again that woke him during the night. And then later, his pumps alarmed, making our day start out all too early. None of us slept well, but that morning I was especially exhausted. Thankfully, my mom offered to take him and let me have a nap.

But when I picked him up, brought him home, and got him ready for his nap, I just couldn’t shake the feeling that something was off. His belly wasn’t settled. He was a little warm. And I didn’t like the way he was stretching his legs as he fell asleep.

So, I tried to call for blood cultures, but Patrick’s GI was out of town. I texted his nurse, who urged me to call the on-call doctor. But I just couldn’t bring myself to do it. He was tired, but ok when he woke up. He had a playdate and was very happy for it, and then it was the weekend. And things seemed fine. And I talked myself out of it.

Saturday afternoon, I got a call from Patrick’s nurse. She’d just been asked if a member of the board of directors could shadow her at work that day, and she thought that our family was a good place to take him. Patrick wasn’t on her schedule, but she asked if she could come help with his dressing change.

That was enough excuse for me to decide we ought to do cultures anyway.. just for peace of mind.

So, Monday morning, I made a mad scramble to get those orders on time for his nurse to draw the sample while she was here. And everything went smoothly. He looked ok to her and made a very memorable impression on the man from the board.

And then, we went up to the hospital and visited another short gut family who was there, ate lunch, and saw Dr. Jackson who also said that Patrick looked good.

I figured it had all been in my head.

And then, this morning, as Patrick and I were out running errands, my phone rang. It was Dr. Jackson calling to say that Patrick’s blood cultures from had turned positive the day before. (And he was pretty furious that he’d only just heard about it this morning.)

The prescribed treatment for the bacteria they suspect he is growing is the same antibiotic he just finished. So, since we stopped treatment so recently, Dr. Jackson prescribed something a little different.

He suggested we just restart antibiotics and treat this infection without going into the hospital.

That made for a crazy morning. I knew it would take time for orders to get in, so since we were at the grocery store, we went shopping. (I’d promised Patrick he could push the kid sized shopping cart at this store, and had to make good on the promise.)

I got to my car and made a couple of calls to let the transplant team and insurance company know about the infection and plan for care. And then my phone started ringing. And it rang, and rang, and rang. I’d pick up one call, only to have another call on call waiting, then hang up the phone and discover another voicemail left because call waiting was busy.

It took a bunch of hurried coordination, but we got all of the plans made.

Patrick’s nurse was going to meet us at our house just after noon to draw a new set of cultures, then the pharmacy would deliver antibiotics. I’d start them then put Patrick down for a nap.

The timing was perfect, as our furnace quit working the day before, and the furnace repair man was due at noon. (Not quite past the last frost of the season yet.)

That gave just enough time to finish my errands. (With the help of my little sister, who messaged me just on time and was available to help keep Patrick distracted while I juggled shopping and phone calls.)

But the rest of the afternoon still didn’t go smoothly. As Patrick’s nurse was arriving at our house, she got a call saying both of her kids were sick, and that what they had was very contagious and she should not see patients.

So, we had to wait for another nurse to come. And then the antibiotics didn’t arrive at 2. I called and found they’d set them aside to be delivered with the TPN order that was due at 4. With a little nudging, we got them here by 3.

My amazing little sis went to work and then came back to my house, where she helped take care of that delivery while I got Patrick down for a late nap. Then, helped me mop the house. (Did I mention that our bird, Max, bit a hole in Patrick’s tubing last night. I didn’t catch it, even though Brian spotted it and pointed out hte TPN drips all over the floor… that is, I didn’t catch it till this morning when his floor and bed were soaked in TPN and his blood sugar was low. We started our day with laundry, mopping, and cleaning a mattress.)

So my sister helped me get the TPN spots mopped up and dinner made. And then, when I woke Patrick and he was feeling miserable from all the medication he’d gotten, helped him play dress ups and then conned him into resting on the beanbag chair with her.

And I just kept thinking that this day was crazy and hard and not to plan.. But it was leaps and bounds better than a hospital admission day.

We’re hoping to keep Patrick at home. We’re going back to me being sleep deprived and him being loopy from the Benadryl he’s on.

I’m sincerely hoping that they’ll find that this bacteria responds best to some other antibiotic so he won’t need the benadryl. But that is probably wishful thinking.

More than anything, I’m hoping that he keeps staying as healthy as he’s seemed and that we can still make it to the grand adventure we have planned in a week and a half.

Any way it goes, I’m feeling especially protected and watched out for today.

And now, rather than staying up all night proofreading or adding pictures to this post like I’m tempted to do, I’m headed to sleep. The AM dose of antibiotics will come early. And tomorrow is going to be one very crazy day. Staying at home means that Brian and I need to do the work of an entire hospital staff. While still keeping up with the essentials of life at home.

At least tomorrow is a school holiday.

I need to thank you. All of you.

Since we got approval to take Patrick to Omaha back in January, I have struggled to maintain a feeling of peace. There were little snippets of it here and there to show me we were on the right path, but overall I have been fighting the idea so much that I haven’t really had much peace.

Yesterday afternoon, we started an online fundraiser for Patrick. Between 5 p.m. when the event was published and when I went to bed, it had been shared nearly 2500 times (that I could count.) Brian and I agreed that it was almost addictive to watch the number climb. It was amazing.

But since today was a sunny spring day, we pried ourselves away from the computer to work in the yard. It was a wonderful morning! Brian added compost to and then turned over our vegetable garden by hand. I weeded all of the flower beds and gave some TLC to the garden surrounding our pond.

Patrick bounced back and forth between the two of us. I introduced him to the joy of worms. Brian gave him a shovel and let him play in the dirt. (Looking for worms of course.)

I like working in the garden because my hands are busy, but everything else is quiet and I can think. And I learn a lot from the work I am doing. I don’t think it’s a coincidence that Christ’s parables are so often about seeds and orchards and gardening. He created these things and they are governed by his laws, and so it should come as no surprise that he can teach us about how our Heavenly Father cares for his children as we care for his other creations.

Take my ivy for example. Around my pond, there is ivy. A lot of ivy. It used to be cute and small and climb up this little trellis thing. But every year, it grows bigger. Ivy, if left unchecked, can even grow through the walls of your house. It’s a strong plant and very resistant to hard things. But, it will take over the garden, making it so nothing else can grow there, unless I come in every spring with my garden shears and start cutting. Not just a little. My goal is to reduce my ivy by 1/3 to 1/2 every spring to give it room to grow again.

Now to the ivy, this could be seen as a big offense. It is strong and growing. How dare I cut it back? But it grows in the wrong places unless a gardener helps to guide it.

See where I’m going? I’ve been a lot like that ivy lately. Strong and determined and trying to grow. And then, when the Master Gardener comes in and says I need some pruning, I fight against it. I mean, let’s face it, when I was a little girl and my parents pruned my willow tree, I cried for the rest of the day. I couldn’t see how it could ever be ok again after being so badly cut. But it was strong, and it did, and when it grew back, it was better.

Another lesson of the day – my pansies. We bought two flats of pansies at Home Depot last night to put in the yard. But, as is often the case with flowers from home depot, they were quite root-bound. I learned when working in a greenhouse that people want to see a developed, blossoming plant when they shop for flowers, and so you have to let the plants overgrow their container a bit to make a sale.

The pansies really clung to their planters. I lost a few, even, trying to free them when their roots just didn’t want to let go. Not knowing that left as they were, they’d eventually wither away because there was no more room to grow in a container meant just for starting. Not that transplantation isn’t hard for the flower. Extra care is required while the flower becomes strong again and puts down new roots.

But I saw that I have been a bit like the pansies, too. Clinging to an old container that no longer meets our needs, instead of trusting in the Master Gardener to take care of me and my family.

Consider the lilies of the field, how they grow; they toil not, neither do they spin:

And yet I say unto you, That even Solomon in all his glory was not arrayed like one of these.

Wherefore, if God so clothe the grass of the field, which to day is, and to morrow is cast into the oven, shall he not much more clothe you, O ye of little faith? – Matthew 6:28-30

As I finished my work today, I realized that instead of turmoil, this morning and most of the afternoon, I had felt peace. I had, in fact, been open to receive some of the answers I’ve been seeking.

And then I remembered 2500+ shares of Patrick’s story. And many, many messages sent saying that we were in your thoughts and prayers today.

And so, I need to say thank you. Thank you for your prayers.

Being Patrick’s caregiver is perhaps one of the loneliest things I have ever done. But today, I didn’t feel so very alone.

The snow in Utah started to melt about 2 weeks ago. As soon as the snow between the house and the swingset was gone, I started to take Patrick out to play. Then, on an especially warm day, when we disconnected his tubes at 4:30 p.m. after his nap, I left him in the backyard when he didn’t want to come in.

Since then, as soon as his tubes come off in the afternoon, Patrick shouts “Outside” and runs for the door.

Most of the time, I can make dinner during this time. I open the kitchen window so I can hear and see him, and I cook while he plays. He’s finally tall enough and strong enough and steady enough to open the door so he can go in and out.

If it is cold, he asks for a hat and gloves, and he still goes.

Yesterday, he noticed an old car seat in the garage. He asked if he could play with it, and since I needed to work in the garden and knew it would keep him contained (it was morning and so he had his tubes on and his pumps in his backpack in a wagon.) So I brought it out.

Now, the plea is “outside” and then “car seat.”

He is undeterred by the fact that he’s had a cold and has been running a fever and nauseated for the past 2 days.

I don’t think the car seat can stay all summer. But the swingset that Patrick can finally climb up into himself can. And so can his bike that he’s tall enough to climb onto. And his wagon that he can get in and out of.

I can tell this is going to be a good spring and summer.

 

(p.s. Thanks to my awesome, talented sister of Picture It with Marcy for this picture.)

I got a call early in this week from the insurance company with some very good news. First of all, they received everything they need to proceed with Patrick’s transplant listing at UNMC. It’s a matter of insurance contracts to make the switch at this point.

Secondly, they have decided that a charter flight to Omaha at the time of transplant is medically necessary.

I should be over the moon excited about this news. There’s some fine print, though, that has been keeping me awake at night. The only way that they feel that they can cover a flight is in a hospital to hospital transfer.

This means that Patrick will have to be admitted to Primary Children’s when a donor is found, take an ambulance to the airport, and then LifeFlight (an air ambulance) to Nebraska, and then an ambulance from that airport and direct admission to the hospital.

This will save us the $15,000 we expected to pay for a flight. The Life Flight alone will cost them over $50,000.

Shouldn’t I be happy?

But I can’t help but worry about this change in logistics. Omaha is still 4 hours away, and the fastest Life Flight plane can’t make it there in under 3. We have 6 hours total to get there. So add in 45 minutes to the hospital, plus admission, plus travel in ambulances.. And, well, when we get the call, we pretty much have to grab a suitcase (there will only be room for one carry on) and run to the hospital.

There won’t be time to gather family and say goodbye. There won’t be time for me to pack another bag. There won’t be room for Brian on the plane. Just a phone call, and we all drop our lives and go.

Brian will have to follow behind, probably booking whatever the earliest flight with a seat to Omaha is, after he’s packed all our bags for us and paid to check all the extra luggage.

I just keep thinking of things about this plan that scare me. Like, what if I haven’t had time to finish the laundry and we’re out of clothes. What if Patrick is at school and Brian is in a meeting? What if it’s RSV season or there’s a school bus accident or it’s new residents week or Patrick’s GI is in South America and the hospital is too busy to admit us on time? What if LifeFlight doesn’t have planes available? (I had 6 charter companies lined up, but there is only 1 Life Flight) What if I went to bed without doing the dishes and the leftovers in the fridge are old and on the brink of molding when I leave? Who will have to come in and clean up my mess and what will they think of me?

I mean, ok, these worries pale in comparison to the reality of a transplant that removes and/or replaces between 3 and 5 major organs of my son’s body. But still…

Thankfully, I came across this amazing sermon this week. (Warning the link will take you to a video broadcast of the sermon.) It was given by Elder Bednar, an apostle, and it talks about having faith to submit to God’s will.

So I’ve been trying to internalize the concepts of “Faith not to be healed” and “It is better not to shrink than to survive.” But I think this quote says it best:

“Strong faith the in Savior is submissively accepting His will and timing in our lives, even if the outcome is not what we hoped for or wanted.”

I know that we were led to take Patrick to UNMC for a new transplant evaluation. And even if there is a LOT about this new plan that worries me, ok, I’ll be honest, that terrifies me.. I am trying to learn to be more humble and submissive and to trust in a loving Heavenly Father.

Patrick finally got to go back to school today. His throat is still red and a little swollen and you can see marks where the white spots were, but his doctor ran every test we could think of and everything came back negative. With no fever and no spots, he’s not contagious. So he was free to go back.

He was bouncing with excitement. Literally.

At last it was time to go. I dropped him off, and then went to chase down a classified ad that Brian had seen for a very inexpensive tent trailer. We’re talking pretty dirt cheap, or we wouldn’t have even been considering. But I wanted desperately to take Patrick camping last summer and ended up with just one half-night backyard campout instead. This raised a glimmer of hope, and then when it turned out to be an offer that really was too good to be true, it kind of bummed me out.

(Brian tried to help tonight by pointing out that we can’t really go camping anyway because there is little cell service in the mountains, and then if we got the transplant call, we couldn’t drop camp and make a plane to Omaha in time anyway. That didn’t help. Just made me sad at one more joy that I can’t share.) But, back to the story…

I thought I’d console myself by sneaking in a haircut. I’ve been feeling shaggy and wanted some pampering. Only when I got to my new favorite stylist, her shop was closed. I was determined and headed to Great Clips instead. I explained that because I of our habit of sleeping over in hospitals, I needed just to trim off split ends. Keep it low-maintenance. But thought I’d mix it up a bit by asking her to round the back a little. 5 inches later, I have shoulder length hair. And there wasn’t even time for a blow dry before getting Patrick from school.

At least when I picked Patrick up, I found he’d had a great day! He couldn’t stop talking about school. It took an hour for him to settle down enough for a nap.

I thought I’d make up for not cleaning while he slept, but after doing the dishes discovered the garbage disposal wasn’t working. I tried all I could think of, then turned to Google. Turns out there’s a reset button, some kind of failsafe, and thank goodness that is all that was wrong. But that was the end of naptime.

Patrick had an appointment with his occupational therapist today. She’s been crazy hard to book with and, thanks to the transplant eval making us have to cancel our last appointment, we haven’t seen her in over a month. He was very excited. Honestly, so was I. He’s doing really well in OT lately, but after this rough month, needed the positive push.

So we were both disappointed when we were greeted with the “business” of having to be read the clinic’s new attendance policy for the first half of our session. Blah! It’s a shame that people have to actually be told these rules like cancel when you can’t come, come on time or call, don’t play with your cell phone during sessions, and please do your homework.

Anyway, his therapist did make up with a very fun last half of the session. Patrick played bowling where he got to roll his ball down a nice steep ramp. And he got to climb up a ladder of stretchy swings and then we bounced him around singing “Wheels on the Bus” and made him laugh that perfect laugh that makes the whole world seem better.

In the evening we stopped at the grocery store. Then we played on the swingset for the first time since fall.

And then, tonight’s dinner became a great triumph. We had leftovers. For family Sunday dinner, we’d had ham and funeral potatoes. And, because it was the weekend of Dr. Seuss’s birthday, I’d made some green jell-o eggs. On Sunday, Patrick was just waking from a nap and didn’t feel well and, with family there watching, didn’t touch them at all. (Despite the fact that he currently loves the book Green Eggs and Ham and had been very happy helping me make green eggs.)

When the eggs made a reappearance at dinner tonight, he was very excited. Excited enough to forget his tofu cheese (current favorite food) to ask to eat them. He couldn’t figure out how to eat them with a spoon. And he didn’t like the feel of them in his hand. But he finally got brave enough to take a bite when I held it for him. Then he thought up the idea all on his own to wrap one in a napkin so he could eat it and took several more bites.

New foods and flavors and textures are a really hard thing for Patrick and so this was a HUGE accomplishment.

“I do so like green eggs and ham.
Thank you! Thank you, Sam I am!”

I had kind of a hum drum day today. And it had a lot of reminders of all that I am giving up as Patrick’s mommy. Sometimes I feel like I don’t recognize my old self in the new me. (Especially with my new low-maintenance haircut.)

But I do love that the new me has the chance to see bright and brilliant things in the small moments that the old me would have missed out on.

I think I need to be a little more like Sam-I-am. Willing to eat some green ham in a box with a fox on a train in the rain. Willing to see if there are some things I like in some places I might not think I want to be in.

Especially as I’m learning I can’t always control where I am or what I am going to be served.

Tonight, Patrick was bouncing off the walls so much that I grabbed Brian’s church keys, walked with him to the church in the dark, and let him run in the gym until he was so tired he was begging to go back home.

We are going a little nuts being at home. Yesterday we went to the zoo. I knew something was up when, as we were unloading the car, a steady flow of mommies pushing strollers was passing us. Turns out it was free day at the zoo. I’m not a big fan of free day. It means that there are a lot more people there. And most of them don’t make it to the zoo very often and so they tend to be more lost. And, they are so caught up in the magic of the moment that they tend to stop when they see something interesting.. Just stop right wherever they are.

Massive crowds of easily distracted people can be scary when you have a toddler with tubes. No one expects IV lines on a 4 year old. And so it’s an extra workout to stay close enough to him to make sure they never get stretched in front of someone.

Yesterday was a madhouse of strollers. They jammed up all the entrances and pathways. And yet, because we were so stir crazy, we stayed. We pushed our way through the crowds and Patrick ate up the company of masses of toddlers all around us.

And he spent the rest of the day talking about the “go-la-las” (gorillas) and  “ollers” (otters). We rode the carousel, twice. And he ran. And we laughed. And things felt normal for a while.

And then, we took Daddy lunch at work where Brian’s co-workers proved definitively how spoiled Patrick is.

And I think that’s how today ended up so stir crazy. We finally got to move and so trying to be still again today was just too much.

I took Patrick to see his pediatrician today. The team at UNMC is concerned that Patrick has been sick so long and asked us to have some viral panels done to try to identify the bug.

The good news it that the spots finally disappeared from Patrick’s throat this morning. And so his doctor says that he can go to church and then back to school on Monday. And the assortment of test we did today will hopefully tell us exactly what we’re up against and if it will cause problems that might mean we need to leave his transplant listing on hold. Hopefully by Saturday at the latest.

But it is sad that I can say that the highlight of my day was collecting a stool sample from Patrick before leaving the doctor’s office today. Well, that and the doctor allowing me to draw the blood sample off of Patrick’s line myself to save us a trip up to the hospital or a needle stick.

Still, it’s a little nice for things to be slow for a while. And nicer still to know that we have been granted our freedom.