Category Archives: G-tube/Enteral Feeding

Transplant Day 1,214 and Tonsils

This is a bit of a catch up post and it may be long. I write today from Patrick’s bedroom. He is lying in bed watching Cars 3 running a Powerade drip into his g-tube on day 5 post tonsillectomy and adenoidectomy.

Patient Zero

How did we get here? Well let’s rewind to the day before Christmas break when I noticed that I had a fever and a horrible neck ache. It likely started with me, though it was Christmas break and I never did get diagnosed with anything more than a virus causing crazy swollen lymph nodes.

The Onset

Mid-January, Patrick got sick. We thought at first it was a cold. He had an ear ache and I took him in to urgent care to be checked with me for an ear infection where we were told it was just one of many viruses, no ear infection. But he got sicker and sicker and on the 3rd day when he refused to eat and I looked and saw the size of his tonsils all covered with white spots, I took him to the pediatrician. She ran a strep test, which came back negative. And we were told again to just go home and wait out the virus.

Sometimes I’m good with that answer. Especially with a kid who’s immune suppressed. But sometimes the mommy spidey sense goes a little crazy. (Ok, ok. It’s actually the extra guidance mothers sometimes get through the Holy Ghost when their children need help.. but we call it mother’s intuition.) Anyway, this time I didn’t feel settled with that answer. So I texted Patrick’s GI and told him what was going on and asked if he had any concerns from a transplant perspective. He called me back almost immediately and told me that he wanted to know what was making Patrick sick so we could stay ahead if it was one of the big viruses that are dangerous for transplant patients.


So the next morning at 7 a.m. Patrick and I headed up to the hospital’s outpatient clinics where Patrick’s doctor met us and arranged for labwork, an exam, and a viral panel. It was a long morning with a couple of hours of tests. And then we headed home. By evening, all of the preliminary viral tests had come back negative. Despite the brutal flu season, Patrick didn’t have Influenza, RSV, or any of the other circulating respiratory viruses. The doctor said good news. I felt even more at a loss.

Meanwhile, Patrick just kept getting sicker and sicker. We camped out in the basement and I had to start using his g-tube to keep him fed and hydrated. He was miserable. I was exhausted. And I just kept checking for lab results because as the day went on, I became more and more convinced that with everything else ruled out, that Patrick must have the Epstein Barr Virus (EBV), commonly known as Mono.

Sure enough around 4 p.m. the results for that test came back positive. I texted the doctor and said “what’s next?”

Some history

I’m going to take a break in the story here to make a confession. Part of the transplant workup is a very long afternoon where you sit in the room with a transplant nurse and they explain to you in detail all of the risks associated with transplant. You’re aware of a few of them. Of course the risks of surgery. And rejection. Susceptibility to illness. But there is so, so, so much more that comes with immune suppression and transplant. Activity restrictions. Diet restrictions. And perhaps the worst is something called Post-Transplant Lymphoproliferative Disorder (PTLD).

PTLD is caused when a patient who didn’t have EBV before transplant. When they catch this virus the first time while immune suppressed, it can cause the lymphatic system to go a bit crazy. It involves into a form of cancer called lymphoma. So, yeah, transplant can lead to cancer.

And the day that sat us down and talked to us about all of these restrictions and risks, especially this one, we were so overwhelmed by the understanding that the treatment called transplant was much more of a trading in of problems than the cure all the happy ending stories on TV had showed us.. we were so overwhelmed that we couldn’t even stand to talk to anyone that day.

3 years later in another evaluation, we knew this information was coming. But it was still hard to hear and even harder to talk about. So, well, we didn’t. We just warned you that transplant wasn’t a cure.

PTLD workup

Returning to the current story.. I talked to Dr. Jackson in the early evening and he reminded to me that more than my immediate concerns about having a kid with mono, we needed to be thinking about PTLD. I thought we’d set up testing within the next couple of days. But when he called back just after we put an exhausted, sick Patrick to bed to stay he wanted us to come in to be admitted the hospital right away, we were a little caught off guard.

And so we advocated for the value of rest and protection from other illnesses and Dr. Jackson consented to try to set something up outpatient.

But at 5 a.m. he texted and said that admission was the best way to make sure Patrick got in for a CT scan right away. They needed a CT scan of his entire body to check to see if there were signs of PTLD. And he said to prepare to stay for an emergency tonsillectomy.

So that’s what we did. Headed in prepared for the worst and hoping for the best.

Patrick did amazing in CT. We thought he might need to be sedated to hold still. But then decided that he is most cooperative when he’s helped to understand what is going on an given a chance to cooperate. When he feels in control. We got lucky in that we were able to get Patrick’s favorite child life specialist there right on time to go down for the scan with us. And though he was nervous, he was very brave and still.

In the end, the CT scan came back negative for PTLD. (Though it did describe in pretty amazing detail the way that Patrick’s vascular anatomy has changed as a result of his lost central venous access.) So they treated him with an IV antibiotic for a raging ear infection they discovered when he came in. And we got to go home.

Getting better

Patrick actually did get better pretty amazingly from the EBV. His immune suppression is pretty low right now because he’s had no issues with rejection. And so the virus mostly ran its course in a couple of weeks. The blood tests went from virus counts in the tens of thousands to “unquantifable” low levels.  Patrick’s appetite and energy came back. And the doctors agreed that Patrick had had just an acute case of EBV and had fought it off.

However, his tonsils stayed big. Not just a little enlarged. So big that they were touching each other big. So large I couldn’t understand how he could swallow big.

And, well, EBV is a tricky little virus. I’ve learned a lot about it over the past month. And one of the things I’ve learned that there’s a family of viruses that stays forever in our DNA. Chicken Pox, herpes, and EBV. That’s why you only catch them once. That’s why they are sometimes reactivated when we are stressed. (Shingles, cold sores, “mono makes you tired for months!).

And because EBV lives mostly in the tonsils, their not getting smaller was a problem both clinically and because it meant a long-term greater risk of PTLD.

Meeting with ENT

So we scheduled an appointment with an Ear, Nose & Throat doctor who took one look and said there was no doubt. Patrick’s tonsils were huge and even without transplant concerns, they needed to come out.

We didn’t spend the visit discussing the need for tonsillectomy. We spent it talking about the problem of pain control when ibuprofen wasn’t allowed. Because that’s one of those lifetime commitments you make with transplant.

Tonsillectomy and adenoidectomy

So Patrick had his surgery on Thursday. We were told 30-45 minutes for the procedure. That’s what I expected, too. I’ve sat in lots of surgery waiting rooms watching ENT doctors go in and out every 30 minutes as they reported about placing ear tubes and taking out tonsils. I often wished I could be one of those parents whose concerns were as brief and uncomplicated as those parents. I felt a bit arrogant at times that I was the one who knew the waiting room attendant by name. Who came to stay there.

So it was strange to be in that “simple procedure” role. Except that, of course, we weren’t.

The doctor came out after a little more than an hour to finally tell us that the procedure was done. That the tonsils really were huge enough to need to come out and that the adenoids were even bigger. That Patrick was doing well, but there had been some “oozing” that had made the procedure a little more complicated. And that he’d be awake soon.

And then an hour later, when they still didn’t call me back to the PACU, despite our insistence that Patrick needed us there when he woke up of he’d be combative and inconsolable, the phone finally rang for us. It was an OR nurse who explained that Patrick had continued with “oozy” bleeding and they’d spent all that time trying to get it stopped.

So we waited some more and the doctor finally came back out to say that things were finally settled. And he thankfully hadn’t needed a transfusion. In all, the procedure took 2 and a half hours. We were at Patrick’s side to help wake him, and then moved to post-op.


Patrick was what they call a status A-11. Meaning he wasn’t admitted but he wasn’t discharged. He had 23 hours that he could stay for observation without having to involve the insurance companies for authorization. So we spent the night in Post-Op Recovery.

Patrick was really inconsolable as he first woke up. He just cried and whimpered and wouldn’t talk. Would barely open his eyes. Finally, I left the room to go to the bathroom and as I listened, I realized he wasn’t as much in pain as he was just angry. So I tried a crazy approach where I came in and told him to stop pouting. Then tried to distract him. I made him start taking sips of water despite protest then pointed out that it helped more than it hurt.

It amazingly worked. His anesthesia wore off. His pain meds kicked in. And he woke up sore but pretty happy. We ordered dinner and he wanted some. And soon he’d eaten 3 yogurt cups and drunk some Kids Boost. But the anesthesia made him nauseous and he couldn’t keep much down.

The night was rough. We turned on the movie channel and let it play all night and would doze off and wake again. Eventually as the anesthesia wore off his pain overwhelmed his hunger and he stopped eating. He’d fall asleep but the swelling in his airway made it so his oxygen levels would fall and the monitors would alarm and wake him again. Or he’d start coughing. And his temperature started to creep up very slowly.

But we made it through the night. Post-Op was so very quiet. Our nurse was great. And by morning, I thought we were in pretty good shape. I even though we might beat the odds and go home at 23 hours after all.

And more observation

When ENT came to check in, they decided they’d like to take a little more time to observe. So they moved us to a big comfy room in the surgical unit. And we watched. And what we saw wasn’t exactly comforting.

Not having ibuprofen was proving to be problematic. See, ibuprofen is an anti-inflammatory and inflammation is a big issue with tonsillectomy. It can cause fevers. It can cause airway narrowing. And of course, there’s the problem of finding a balance with pain control when you have to use an opiod.

It took the whole day and night to get a handle on using the g-tube to keep him hydrated and his gut moving, to figure out how to help his cough and keep his saturation up. And to make sure the fever wasn’t getting worse.

They did a chest x-ray to rule out pneumonia. But did advise us that with that long of a procedure, Patrick’s lungs would need help to refill the air sacs.

Home again

But after a second night, we finally reached a stable baseline and headed home. The first day home Patrick was just exhausted. He fell asleep anytime he held still. Wherever he was. They warned us day 3 is the most painful and, well, it was.

Yesterday, he started to perk up a little after a good night sleep. I finally was able to convince him to start sipping some water. And he even ate a little bit of macaroni and cheese. Which wore him out.

But he started to play and tease a little bit. It was good to see his smile back. And our bird, Max, followed him everywhere he went.

He fell asleep by 5 p.m. But that’s good as his cough has gotten worse again overnight. But his pain is a little less, he’s more awake. And before I finished this post, he happily though tentatively ate some KFC mac and cheese for lunch.

This recovery is a slow process. And unfortunately, Patrick’s having to do it the hard way. As caregiver, I am very tired. Sleep, food, and personal care have been hard to come by.

But we’re getting there. And it’s only supposed to last 7-10 days.

And on the other side, my son is acting completely loving and smitten with us, instead of his usual independence seeking self. I’m going to soak up every minute of a cuddly loving boy who just wants to be with me. Because soon he’s going to really be too big to hold on my lap for half an hour.

I hope to post more updates. But remember, as always with this blog. Usually the times I’m quietest are the times that are calm. If I’m not writing, it probably means that we’re busy and happy.

Feeding Tube Awareness Week


Once each February, a week is dedicated to helping raise awareness about tube feeding. I feel like the past 7 years of our lives have been a walking tube feeding awareness ad. If you haven’t picked up on the fact that you can lead a full and happy life while being tube fed, then you haven’t been paying attention. And so I try not to get too vocal during this week.

However, this week, just on time for tube feeding awareness week, Patrick has started to require supplemental feeding. And so I’m going to take a minute anyway to explain what a frustrating blessing a feeding tube can be.

Since last October, we’ve been trialing having Patrick eat 100% of his calories. And he has lost weight ever since. At first it was really rapid. That wasn’t a surprise. He wasn’t used to eating that much and we dropped a lot of calories and hydration very suddenly. We’d fattened him up and he had room to learn.

He really did a marvelous job picking it up. In a couple of weeks he figured out how to drink enough to stay hydrated. And he picked up meal and snack times pretty well. But he just kept losing. We’ve added more snacks. We’ve added more butter and fats to every meal. We started giving him milk at every meal. We added protein shakes.

But months later, he is still losing, even after “doing everything” that his dietitians could think of to recommend.

There just don’t seem to be enough hours in the day for Patrick’s belly to take in enough food. He gets full and uncomfortable and doesn’t want to push more food.

Eating is such an emotional thing. It’s social. It’s bonding. It combines smells and tastes with memories. But what if your memories of food weren’t positive? What if for years eating made you sick? Was always high stress? What if you were expected to dive in suddenly at a level of eating skill than other kids took 7 years to master? And what if the stakes were so high that everyone was watching to see if you did it? And when you felt completely stuffed, you were always being told “just one more bite”?

Patrick was losing weight. And I found that I was pushing too hard. Worrying too much about making sure Patrick got enough calories and then getting really upset when he didn’t eat what was put in front of him. And that pressure was actually causing us to lose ground. Making Patrick not like foods he’d once loved.

So we’ve turned again to the feeding tube. Just a little. A week ago Brian suggested that maybe we should start giving some carnation instant breakfast first thing in the morning when he wakes and last thing before bed. We know it helps his belly wake up. And it would give him extra calories.

The first day that we did it and he wasn’t hungry for breakfast after. I had a good cry about losing breakfast. Losing progress. Not fully achieving the miracle. But Howie convinced me to give it time. And now I see that, this way he’s getting the same morning calories. Plus he’s hungry for a snack and to eat his lunch at school.. something we’d struggled with. In other words, Patrick seems to be better off this way. And maybe I was looking the wrong way at miracles.

I’m finding myself humbled and grateful for medical technology that can help him yet again. I am remembering that just because all struggles aren’t gone, it doesn’t mean a miracle hasn’t happened. Not all healing means perfect health.

Do you know that tube feeding is so new, even in the United States, that Patrick’s GI doctor was the first to place a g-tube (stomach instead of nasal feeding tube) at his our children’s hospital? That it’s so new that there are countries where the technology is only still just being taught?

We take it for granted. This ability to feed patients who otherwise couldn’t eat enough. I’ve even heard people say it’s weird, gross, unnatural. But really, it’s amazing! Minimally invasive. In fact, I often wish every child could have a button. That I could have one myself. I know hundreds of families with feeding tubes. I can count on one hand those who weren’t immensely grateful for them. Who didn’t feel that they exponentially improved their child’s quality of life.

Hopefully, we’ll only need this little bit of help for a while longer. Just enough to take the “Please eat so you won’t die” sort of pressure off of learning to eat. Please note, “Please eat so you don’t need a feeding tube” doesn’t work. Patrick knows from experience that being fed through a tube is exceptionally convenient and comfortable. Fed is fed. And it’s so stress-free he sees no reason to avoid it. I mean, seriously, if you could just keep doing the things you love without having to stop to eat or drink, wouldn’t you choose that too sometimes?

However, we are finding it’s possible to take a bit of the hunger/starvation edge off of learning to eat this way. Just enough feeding to help his belly move. Just enough calories to help him grow but let him be hungry. And hopefully soon, Patrick’s love of food will help him overcome some of his fears. And he’ll need less and less of the help.

But in the meantime, isn’t is wonderful that we don’t have to do it without help?

Tubies of the world unite. Or some other catchy social media phrase meaning tube feeding is awesome.


Transplant day 349 and the one-year follow-up

We just got back from Omaha again. It was a short trip. Barely more than 48 hours. In some ways very routine and unexciting. In others, very eventful.

About a month ago, I remembered to ask Patrick’s transplant team if he was supposed to have a one-year follow-up appointment. They said yes.. and then I asked if it really had to happen right on the transplant anniversary. After all, remember, Patrick’s transplant happened both on his birthday and on Halloween. We didn’t really want to spent October 31st at a doctor’s appointment.

They said it didn’t matter, and so we decided to take advantage of Patrick’s fall break. We checked him out of school on Wednesday at lunch and hopped on a plane to Nebraska.

He was crazy excited this time. Or may anxious. I can’t decide. He was happy about the idea of seeing his nurses and couldn’t seem to let it go. We tried to explain that this was just a checkup. But he didn’t settle down until after the appointment. I think because then he knew it was all ok.

Wednesday night, because Patrick was bouncing off the walls, we checked into our hotel but then headed down to the riverwalk to try to burn off some of his nervous energy with a stroll along the Missouri. It was really dark. And it took a really long time for Patrick to settle down. But eventually, he did. And it made him tired enough to sleep pretty well that night.

The next morning, it was cold. Especially for us, coming from Utah’s record-breakingly warm fall. We tried to go to a playground but got too cold. So then we went for a drive just because. We decided we were hungry and Patrick asked for chicken nuggets. So we drove to McDonalds and Patrick discovered McNuggets. I discovered that Sweet and Sour Sauce is made with peaches and so there really are no Patrick allergy-friendly dips available and we settled for ketchup.


Finally, it was time for the appointment. Patrick hadn’t finished lunch so we brought it along and as the team came in, Patrick was munching on french fries. He then decided he was still hungry, and we added on a lunchable.

The appointment was mostly routine. They recorded his vital signs and growth, went over his medications, asked if anything big had changed. Then the surgoen joined us and looked Patrick over. He said Patrick looked great. He said to go ahead and discontinue one of his antibiotics. And we talked about when and how to decrease his immunosuppression one more level. Then I asked some questions I had. Patrick played with the doctor and his cell phone. And then they went on their way.

Posing with some statues at the zoo

Posing with some statues at the zoo

The dietitian came in to talk to us next and we decided to go ahead and stop Patrick’s tube feeds and see if he can keep up with his nutrition orally. That doesn’t mean that for sure this will work. It means a really focused effort to make sure he’s eating and drinking enough. But it also means some new comfort and freedom for him.

Not doing tube feeds means having to figure out some other things. Like teaching him to take a chewable multivitamin instead of giving a liquid. It also means that we have to figure out a way to give him 1 teaspoon of baking soda in divided doses throughout the day. Right now, that can go along with his meds in his g-tube. But one day, they’d like a goal of him not needing anything by g-tube. They’d even like to remove his g-tube. And so eventually we’ll need to find a way to get him to take baking soda in food.

A few weeks ago, the hospital’s PR department called and asked if we would be willing to let a news crew come to Patrick’s appointment. So there was a cameraman there filming the whole time. (Well, except when the dietitian came in. She is camera shy.) And then we went and did interviews afterwards. It’s so hard to capture this big story in just a few words. I hope we did it justice. We tried taking them upstairs for Patrick to visit with some nurses. That just ended up being really awkward. Oh well. One day, the story will air and I’ll share it here. We hope it gets people talking about organ donation. And maybe express our thanks to Patrick’s donor’s family and also the amazing medical team who got him this far.


Couldn’t resist this photo op.. given that these two missed wearing their matching minion costumes last Halloween.

We stopped tube feeds that same night. Patrick was really restless in his sleep, too. I don’t know if that was because of the missing tubes. Or if it was because I snore. Or because he discovered how truly heavenly comfy sleeping in down pillows is and spent the whole night trying to figure out if he wanted to sleep in the down pillow more or sleep snuggling with me more. I finally told him I didn’t mind him sleeping on the pillow. He said, “You won’t get mad?” And I said, “No. It’s a soft, soft pillow” and he snuggled down and went to sleep. He’s asked for a down pillow for his bed at home.

After the appointment, we had 24 hours before our flight home. So we did our best to find some family fun. We went to the zoo both days. The first, Patrick wanted to just play outside. We got jumbo pretzels that we ended up sharing with some very demanding peacocks.


And we let Patrick play on the zoo’s playgrounds that we’ve mostly shied away from in the past year. Then, we went to find dinner in Omaha’s shopping district called Old Market. We ended up at a family italian restaurant called Spaghetti Works where Patrick got to experience his first salad bar. He ordered grilled cheese, which turned out to be a very disappointing sandwich made of two pieces of cheesy garlic bread stuck together. So instead, he ate my spaghetti.


The next morning, we packed up, ate breakfast, did laundry. Finally, we had to check out and so we went back to the zoo. Brian splurged a bit and bought all-day ride passes and instead of looking for animals, we spent the day riding stuff. We rode their steam-powered train. (Makes all other zoo trains seems like a huge disappointment.) We rode the carousel. We rode the “ski-fari”, in other words, one of those ski-lifts made amusement park ride.

The ride passes included admission to the stingray encounter which actually turned out to be awesome! They have trained their stingrays to take a piece of fish from the back of your hand with a certain command. And therefore, because they know this command, if you put your hand in the water they right way, they’ll swim over and put their mouth over your hand and suck. They call it a kiss. Also, because guests feed them, the stingrays will come to guests looking for foods. So instead of gathering hoping to snag a quick touch, you have stingrays coming up and reaching out with their fins to get your attention. It was really cool.

It took us all day to figure out how the zoo tram worked and we happened to go exactly opposite the most efficient way. However, that did earn us nice walks through the aviary and lemur island exhibit, which we didn’t do much of in the winter. And then we had a nice long ride to end our day at the zoo.

IMG_20151016_112902 IMG_20151016_113147

We went back to Old Market for lunch. Brian remembered that I’d heard of and really wanted to try a restaurant/bakery called Wheatfields. They have a reputation for being really allergy conscious. We caught them 5 minutes before close so we made a hurried lunch decision. But it was delicious, nonetheless. I ordered Patrick his first cream soup. (New option without a dairy allergy.) He had the creamy chicken and rice. Ok. We both did. I ate about half of it because it was huge. But he did great with it, which gives me courage to try more. If you have a great cream soup recipe, sent it my way.

And then, we caught the flight home.

I am super, duper proud of Patrick who made it the entire trip in underwear and without any accidents.

In fact, I’m just extremely proud of Patrick. He discovered this old video on his tablet taken a couple of years ago. It’s of him and me playing at the table. Nothing much. But I can see so many changes.

Patrick’s speech has come SO far in the past year. In the video, he is licking and spitting out fruit snacks and asking me what happens if he swallows. Now he is eating full meals. In the video I’m telling him not to drink too much water so he won’t make himself sick. Now the only concern is if he’s drinking enough. He’s still himself. Dramatic. Adventurous. But without the limitations.

He has come SO far.


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.


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.


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.


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.

Transplant Day 149 and how liver enzymes meant a weekend in the hospital

Hello from “The Hotel on the Hill.” If you are new to our blog, this is the nickname for Primary Children’s Hospital which is situated in the foothills of the Wasatch mountains on the edge of the Salt Lake Valley.

We have been here since yesterday afternoon. Here’s why.

A few weeks ago, Patrick’s nurse checked his temperature when he came to draw his morning labwork and it was a little high. Later that day, his labwork showed elevated liver enzymes and a slightly higher white count. These two signs together usually mean an illness and we thought that maybe Patrick had a bit of a stomach bug. The numbers stayed high for a couple of days, then went back down. We called Nebraska Medicine and they said they would check some viral studies to see if something was brewing. No one seemed too concerned.

For the past several weeks, this pattern has repeated itself. Once or twice a week, Patrick’s temperature has gone up. His liver enzymes go up. Sometimes his white count goes up. Sometimes it doesn’t. And Patrick never got sick. And no one ever seemed really worried.

Well, this Tuesday, when they checked Patrick’s labs, his liver enzymes were up by almost 100 points. His white count was normal this time. His temperature was 99.7. He was acting fine. But they also finally got around to those viral studies which showed no concern for the viruses they suspected might be to blame. Also, Patrick’s prograf level was a touch high and the transplant team decided to drop his dose by half.

I texted Patrick’s local doctor, Dr. Jackson, to let him know about the change and that night he called me.  He suggested that the one other thing we hadn’t checked for was infection in Patrick’s central line.. maybe some small amount of bacteria seeded there. So the next morning Patrick’s home nurse came by and drew cultures and repeated liver enzymes and prograf levels. The liver tests came back pretty early. The enzymes that had been high were the same, but another marker was now up, too.  And Saturday morning, as we were getting ready for the day, we got a call from the GI fellow on call who said that Patrick had tested positive for a line infection.


Well, Patrick was still feeling fine. So we asked if we could still take him to the Make-a-Wish easter egg hunt we had gotten him up early for. Then I called Dr. Jackson to figure out how exactly to proceed. We talked about starting treatment at home, but Patrick needed some vancomycin.. a drug we have a love/hate relationship with because it clears infections, but Patrick’s pretty allergic to. It gives him a rash, so he has to have benadryl. It also makes his belly quite sick and we didn’t know how a new gut would take it.

So, we made a plan to bring Patrick inpatient for the weekend while we start antibiotics and figure out what comes next.

Because he is still so soon after transplant, we are making our first stay in the cancer/transplant unit, or immune compromised unit. (ICS). At first, I was worried they might kick us out after we went through all the work to make an infection-risk-minimal admission. They don’t accept transplant patients after the initial immune suppression and they didn’t know us and thought maybe someone was sneaking us in. But once they heard “5 months since transplant” it was ok.


They are experts with central lines here, which is nice. They don’t do g-tubes or ethanol locks often, though. Apparently only short gut and related GI diagnoses get the full gammut like we do. So there’s still some teaching to do.

The nice thing is that they keep the rooms super duper clean and, really, the nursing staff here is in general a little more experienced.  The techs are really on the ball making sure things are cleaned up, diapers charted, extra food collected, teeth brushes, baths given, etc. There are things in this unit that I would have killed for in Nebraska. Like washing machines down the hall. (Last night Patrick had a diaper leak and they just showed me to the washing machines so I could clean it up.) And bathtubs. Patrick was very excited to take a bath here this morning. And needleless hubs with scrub caps and a policy of scrubbing the hub for a full 15 seconds and then letting it dry.

The room is smaller, but these rooms feel like home. And the parent bed is comfy. And the view is spectacular. And the cafeteria is just downstairs and still serves most of our comfort foods, even though they’ve just remodeled.

So it’s different, but it’s home.

This has been a very long week. We are all very tired. Monday night, my cell phone rebooted and wouldn’t load its operating system afterwards. Brian plugged away at it every chance he got, but there was no fixing the problem. So I had a few panicked days where I could see abnormal labs but couldn’t text as I normally do to communicate with Patrick’s medical team. Thankfully, Google has amazing customer service and pulled off a warranty exchange before Friday.

Tuesday night, I started to get an ache at the back of my throat. I hoped it was allergies, but was pretty sure it was a cold. I woke up sure I was sick. So I masked and gloved up, stripped and washed all my bedding, did as much laundry as possible, clorox wiped everything in sight and just tried to muddle through with as little exposure to Patrick as possible. It took round the clock mask-wearing, lots of handwashing, lots of running outside or to another room to sneeze or cough of blow my nose, and lots of picnic lunches (so I could eat without breathing near him) to get through the week. Thank goodness family was in town visiting. Two nights in a row, Brian took Patrick to dinner with his family, leaving me home to rest, clean, eat, and breathe mask-free.


I was still sick and masked yesterday when we came up here. I was almost afraid they wouldnt’ let us into this unit with me sick… but I’m following the same precautions the rest of the staff here does so it turns out it was ok.

Thank goodness I am better today, though. My ears are so tender from wearing a mask all day and night that I can barely stand to wear my glasses and putting a mask on this morning to walk Patrick to the playroom almost made me cry.

It hasn’t been a better week for Brian, either. Coming home from work and taking Patrick away immediately is not easy for him. And he has some some busy weeks, preparing for some organizational changes heading his way.

So we were beyond grateful yesterday morning when Patrick’s doctor asked if we’d like to wait and come into the hospital at 1:00. We had promised and easter egg hunt and we had a great time. Make a Wish throws a great party and no one looks twice at you wearing masks and gloves and not eating any candy. Patrick was so very excited to meet the Easter Bunny. We got his face painted. We had a great time in line with the clown making balloon animals. (Have I mentioned Patrick loves clowns?)  The egg hunt was only mildly interesting to him. He gets tired walking still and so running around hunting eggs wasn’t the most exciting idea.


The eggs were filled with candy and Patrick was a bit disappointed. But we knew we were headed to the hospital and were feeling generous and Brian had a coupon. So, we offered to let Patrick trade his candy for a prize and we headed to the Disney store.

We talked briefly about heading home and doing our chores but opted for some family fun time instead. We started at the Disney store where Patrick picked out a Mickey Mouse train set. Then we went to a built-to-order pizza restaurant and let Patrick design a cheeseless pizza. He loved it and scarfed it down and packed up his leftovers to go.

We left the mall and went for a walk around Temple Square. If you’ve never seen the gardens at Temple Square around the time of LDS conference you should, Especially in spring. They are amazing! Tulips and fountains and pansies and flowering trees raining white petals everywhere.

Patrick did what all little boys do… walked the borders of every fountain and ran away and climbed up into the bronze statues.

And then, it was time to come up to the hospital.

And it was strange being admitted to a new place that is different but familiar. We had an ok night. Patrick didn’t nap on schedule. Not a surprise. But after they gave him benadryl at 5, his eyelids got droopy.

I turned on a broadcast of the LDS Women’s Conference right after Brian left to go get things cleaned up and packed up at home. They started off with a video presentation of a song that Patrick knows from church, The Family is of God. View the video here. Knowing he loves these things, I pulled him up on my lap to watch. He snuggled right down and his eyelids started to droop. The song ended and I told him to stay cuddled and I’d get him a show on his tablet. Well, his tablet was slow and before I had a show loaded, he was asleep. He slept on my lap for 2 hours. I got to bask in a quiet evening of gospel and sisterhood and uplifting messages about the importance of motherhood and womanhood and family. The entire conference is available to watch, read, or listen to here. Largest women’s conference in the world. Totally worthwhile and inspiring if you have time.


And then, he woke up was very mellow the rest of the evening. We watched movies, played with syringes, cuddled on the bed. At 11, he seemed tired enough finally to sleep so I turned out the lights and he was out in 5 minutes. He slept all night except for diaper changes and woke up with the sun. (Much to my chagrin).

Rounds came early this morning. They said that he had immediately responded to antibiotics and his liver numbers were already trending down. No cultures have grown out, though, from the labs drawn right before antibiotics were started and we can’t quite explain it. The doctor suggested that another option for the off liver numbers being bacteria from Patrick’s gut gettiing into his liver through the gastric bypass created at transplant. I guess we’ll explore that more.

But the long story short is that Patrick seems to be responding well to treatment and shouldn’t be hospitalized long. And we’ll have more conversations about the cause of the problem and the fate of his line in the future.

It’s been a quiet Sunday. Patrick is so much calmer in the hospital now. I don’t know if that’s from practice being in the hospital and entertaining himself alone or because his sensory processing disorder is less of a problem since transplant or because his nurse last night started giving him all the used syringes and passed along in report to continue doing so and he has like 30 of them now, plus extensions to connect them to and that always keeps him happy. But he’s quiet and once we’d all had a nap we were all happier.

That was a lot of story to tell. I really should blog more often so you don’t have as much back story to read through. Oh well.

“Do you know deep in your heart that your Heavenly Father loves you and desires you and those you love to be with Him? Just as Heavenly Father and His Son, Jesus Christ are perfect, their hopes for us are perfect. Their plan for us is perfect, and Their promises are sure.” – Carole M Stephens, Relief Society General Presidency, LDS General Women’s Conference, October 2015


Transplant Day 132 and a follow-up visit in Nebraska

I am writing from the window seat of a room in the Omaha Ronald McDonald House. Today marked 1 month since they told us that he could go home to Utah. And so, today, he had a follow up visit to see how things are going.

It’s been an interesting few days. First of all, can I say how much it broke my poor little brain to try to pack for this trip? Travelling with TPN was hard. It took lots of big luggage and days of coordinating Fedex deliveries and special planning and packing for airport screening. In the past, I brought every suitcase we own packed to the 50 lb limit and also have at least 4 boxes shipped. This time, well, what I needed to bring was not iV supplies. It was formula. And food. I had to pack snacks.

i got everything gathered to put into suitcases and I looked around and I had too many suitcases. And the problem flustered me so much that I had to just go to bed and sleep on it. I had nightmares about not being properly packed. Then, I got up in the morning and I filled the extra space in one suitcase with pillows and blankets and I decided that we didn’t really need one bag as a diaper bag and another one to carry my electronics and medicines. And none of the bags weighed over 40 pounds. And it was all ok.

In fact, it was easier to get to the airport. Brian had flown in and out of this city enough times to know which flights would be fuller and have a busier airport and did a great time picking us a slow time in the airport. Patrick and I donned masked. (I wore one so Patrick wouldn’t feel so alone).. and i gave him a new pair of touch screen capable gloves. And we strode into the airport not struggling under the weight of overfilled bags.

Brian also had applied for TSA precheck status which meant screening for him and Patrick went much more easily. I still had to go through a regular line which felt, well… very strange. To leave them and go off on my own. But things were simpler. Patrick’s many medications had to be checked in the mass spectrometer.. but that is so much simpler than checking a cooler of IV fluids that they still were done by the time I got to them. They’d have beaten me had they not decided to let Patrick be screened in his wheelchair/stroller.

The flight was difficult. Patrick really has a hard time not playing with the window shade and keeping his feet off of the feet in front of him. Under normal circumstances, you can redirect this. But his steroids make it very hard to change Patrick’s mind once an idea enters them and we had a few stretches where I just had to hold onto him to keep him from hitting the seats around us until he settled down. It wasn’t all that way, though. He ordered himself a “diet water” from the flight attendant and had a happy snack time and we played with stickers and some mommy school games I’d laminated and brought along. Patrick’s desire to learn still overpowers most other things. And thankfully, the flight was only 2 hours anyway.

We rented a van and drove to the Ronald McDonald House. It was strange to be back and feel so at home here. Before out of state clinic visits were big adventures in new places. Now, well.. this is just a second home. Patrick, in fact, loves pointing out that we are coming home when we come back to the Ronald McDonald House each time we do. He is very mad at me that we are not restocking the fridge with his favorite foods and are eating out instead.

However, I like him eating out. He figured out he likes hamburgers last week and I love seeing him eat half of a hamburger plus some fries when we get him a kids meal.

We are aiming for a more vacation-like trip. Last night we went out and explored a shopping district called Old Market that we heard about but didn’t brave in the cold. It’s kind of a cool atmosphere. Like a toned down Pikes Market in Seattle, but with fewer people. And well patrolled by police. They allow street musicians, but not others begging on the corner.. so you could enjoy that ambiance of that little addition. It is warm here and nice to be out.

We did stop at the store for a few snacks and staples (and some sugar-free soynut butter that I haven’t been able to find in Salt Lake). And we stayed up snacking while waiting for meds time, even though Patrick was far too tired and overexcited about being here.

Today’s been a really nice day. In the 70’s, so we have been able to be out in short sleeves. We have never caught nice weather in Omaha before. We got up with the sun, as Patrick always does.. and made it out to go to the zoo early. We really love this zoo and find something new each time. This time it was the otters that caught his fancy. He didn’t like the sea lion training, though we did. And he was tired and wanted to go back to the room early, but we didn’t let him.

I’ve been tired today. At midnight last night, as I refilled Patrick’s formula feeds, I noticed that I’d left the charger for his feeding pump home. And I tossed and turned worrying about it all night. Trying to think who I could borrow from and what it would take to get homecare set up again in this city for just a few days. It was top priority this morning. It wasn’t hard to fix. I made a call to our homecare company who said that they often will lend chargers to people in a similar situation. So I called Children’s Home Health, the company we used while we were here, and explained the situation. They said no problem and to come pick up a pump. I signed a form saying we’d pay if it wasn’t returned and they gave me an envelope to return it in since they won’t have open offices the day we leave. And that was that. Easy peasy and why did I worry so much?

Oh well..

Patrick’s clinic appointment was this afternoon. That was also easy peasy. We checked in and there was some confusion about insurance now that we are more than 3 months after transplant.. but they voted in the end to leave that for the financial folks to sort out. We weighed Patrick in and he’s gained again.. and even 22 kilos, or almost 50 pounds.

The doctor we saw today was the surgeon who did Patrick’s transplant, Dr. Grant. This made me very happy. Not only does she, literally, know him inside out but we really seem to click as far as philosophy of care. She said that he was doing remarkably well and to keep on this same path. They were happy to hear he was eating and the dietitian adjusted his feeds again so that he’ll have 8 hours without tubes in a day… I had to promise to keep him drinking in that time so he stays hydrated.

Dr. Grant asked what we were doing about school. We confessed that we hadn’t dared send him back yet and were setting up home school instead. She actually seemed pleased with this answer.. she kept saying “It’s only been 4 months.” Pointing out that it’s easy to overlook how new this all is because he doesn’t have an ostomy or a feeding tube in his nose as most kids do this short time after. She started out recommending summer school or back to school in fall.. then conceded that maybe sending him back sometime after spring break so he can finish this year with his same friends and teacher would be a good idea.

After his physical exam, she pointed out some stitches we could have removed next time he’s sedated. And she said that she doesn’t think he still needs any physical restrictions. Monkey bars here he comes.

And then she said the words we’d dreaded. “So what do we do with this central line?” I decided to just speak my mind. I told her that we were ok with him not needing a line, but worried removing the one he has given how hard it was to put in and the chance of losing that access. I said this once before to another surgeon and was told I was being overly conservative. But Dr. Grant suggested just what I had imagined as the best solution in my mind: A port. This is a central line but one that stays under the skin except when it’s needed. There’s a small disk that can be accessed with a needle.

The nice thing about it is that it isn’t as prone to infection as a broviac line. It won’t need a dressing and he’ll be able to bathe and swim and get dirty.  Also, it means that Patrick’s labs will be easier to draw and less painful, since they can numb the site. The disadvantage is that it’s still a central line and runs a risk of infection and needs careful monitoring for fevers.

We made a plan to come back after the end of the school year and have them change Patrick’s broviac line for a port. We’ll leave that for a little while longer till we know it’s safe, and then remove it.

We won’t need to come back to Nebraska until then. Oh, and labs can now be once a week.

So overall.. still good news.

And now it is on with our mini-vacation. We have had a snack and a nap and are now headed over to the hospital for movie night.. then back here where some nice church ladies are cooking us a turkey dinner.

I don’t want to delay the fun, so pictures will have to come in a later post.

Transplant Day 72 and Discharge Again

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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