surgery – Patrick Hoopes

Transplant day 2,434: Explaining why

“A child born to another woman calls me mommy. The magnitude of that tragedy and the depth of that privilege are not lost on me.”

Have you seen that meme? It captures my feelings towards birthmothers in general, and Patrick’s birthparents in particularly so perfectly. I feel it to the core of my being.

It also only captures a fraction of the unrepayable debt of gratitude that I owe as a mother.

Another child was lost young in an accident, and that family chose in the face of unimaginable loss to give a piece of the life of their child to mine through organ donation. That is tragedy so vast and privilege so profound I struggle to comprehend it.

The pandemic has pushed this truth to the forefront of our awareness. “Patrick’s a transplant recipient” is a phrase we say so often it sometimes loses meaning. It tells you he has health problems that require extra accommodations. It may even tell you his health is fragile or that he’s been through a lot of trauma.

But in our house, lately, we’ve had a lot of discussion about what transplant actually IS. See, Patrick received his transplant the day he turned 6. He was too young and had far too little language and understanding to know what was happening to him then. But there’s nothing like a pandemic to provide time for questions and answers.

Patrick has some fairly distinct memories of his recovery. The staples itched. The stitches were blue. But many of the memories are fading. (“Mom, what’s an ostomy?”) He’s twelve and a half, more than double his age at transplant. Early childhood memories fade and our minds protect us from trauma. He remembers feelings, but very few details.

This week, he found a memento of transplant: a pillow in the shape of a liver with the hospital logo emblazoned on it that was signed by many of the ICU staff. Patrick loved writing and names, so it was a way he connected and found peace.

I can’t put faces to most of the names anymore. But as we talked, I pointed out how many of them had written their specialty and that could tell us who they were. Nurses helped with pain and meds and dressings and keeping him comfortable. Respiratory therapy would come to make him take deep breaths and refill his lungs, since it hurt too much to breathe, let alone willingly cough. And child life made sure he had toys and volunteer visitors fun activities and the occasional magic moment.

One of the signatures was from the physical therapist. She’s one of the only faces I clearly remember. I told him how she came every day to help him learn to walk again and how, at first, that was very hard because it was so painful. (I also told him about how much he loved her because she would hide Blues Clues in the halls for him to find.)

That led to talking about his scars.

Patrick had a vertical incision that ran the length of his abdomen that was closed with staples and, as a result, he has a very impressive scar. We talked about what he remembered about how that looked and felt. Then he turned his attention to other scars. He has all kinds: from big to small, from straight to round and some that are curvy. Some are surgical, some from his birth defect, and others from accidental injuries. And he made me help him inspect his entire body and tell him how each one got there. Sadly, there really is a scar and a story for almost every appendage.

“Why” has been a big topic of conversation lately. We’ve had to answer a lot of “Why’s” about the COVID precautions we are taking. And a lot of why’s about other people who are not longer taking them. And in the middle of one of those “why” we still wear masks when others don’t, it occurred to me that Patrick knew “transplant” as part of his identity, but didn’t understand what the word meant.

I’ve been thinking that, since we moved and so much time has passed, many of our friends, colleagues, classmates and fellow congregants don’t know the why and how either. So, since we’re already opening the emotional pandora’s box by explaining these things to Patrick, I thought maybe I’d tell you what I’ve been telling him.

Let me take you on a tour of his scars.

(Just a heads up, Patrick is very private about his scars and doesn’t like to talk about what he’s been through.)

First, there’s the short little horizontal one that runs to the right of his belly button. This one’s from his gastroschisis. Gastroschisis is a birth defect where the abdominal wall doesn’t close and the intestines develop outside of the body. This was the start of his troubles. Patrick had complicated gastroschisis. The intestines twisted and died. He was born with a small hole in his belly. The surgeons did a quick exploratory surgery where they found that his entire small intestine and most of his large intestine were missing. They placed some drain tubes (since his intestine was too short and too narrow to reconnect) and closed the hole surgically. They also placed a PICC (peripherally inserted central venous catheter) to give him nutrition by IV as his digestive system was completely non-functional.

A few weeks later, those drains weren’t working. So they pulled the end of his duodenum to the skin’s surface in an ostomy (which means a hole in your body that accesses an organ) and placed a feeding tube in his belly. (That tube is still there, used for meds, not food.)

We were granted guardianship and flew him from Michigan to Utah by air ambulance. A short time later, he developed his first central line infection while still in the NICU. He has a scar on the back of his right heel where a busy nurse missed that the IV antibiotic being given there had caused the vein to burst. This caused a nasty IV infiltration wound. He also earned his first broviac line scar. (Broviac lines are also central lines, they run to the heart.. but they go in a tunnel through the chest. Patrick’s chest and neck have several pock-mark looking scars from broviac lines.)

The next 5 years were spent waiting for transplant. Beginning in July of his first year and continuing for the next year, he seemed to have constant sepsis. We’d clear one infection, and two weeks later be back in the E.R. with another. It was terrifying, especially when yeast started to grow inside his body. Yeast is sticky and difficult to kill. The antifungals used to treat it are harsh. Eventually, their toll was too much for his little body and his heart stopped.

This left scars you can’t see in the form of an anoxic brain injury, but also a new little one in his thigh from a femoral arterial line. It also left some emotional scars for all of us. We were fortunate that, because the amazing team at the hospital that day performed such excellent CPR, he was revived and has such minor damage. Still I know what it is to have my child stop breathing in my arms. And I know what it is to have arms ache for a baby that isn’t there. We live with the effects of that day constantly.

At 9 months old, Patrick’s first transplant team said they didn’t want him to have an ostomy anymore. So a surgeon here in Utah connected his duodenum (the segment between stomach and small intestine) to his large intestine. That incision was a small vertical one next to his belly button. It left his belly looking like a star and we lovingly called him our star-bellied sneech.

Playing in a hospital crib after reanastamosis

Over the next 5 years, he had lots of lines, another surgery, a couple of liver biopsies, and significant scarring inside his major blood vessels from his chronic need for total parenteral nutrition and the accompany central lines. His veins became so scarred that we though he might lose access to IV nutrition and starve, but the interventional radiology team in Nebraska managed to restore access through a very risky procedure than passed a needle tipped catheter up his femoral vein, through his heart and out his jugular.

He had IV pumps in a backpack that he took with him everywhere he went that provided him with nutrition in the form of TPN and lipids. Not having an intestine meant a chronic diarrhea and vomiting, too, so we had one more pump for IV hydration fluids, and the occasional extra pump running broad spectrum IV antibiotics. We carried a diaper bag full of saline and heparin syringes and emergency kits, along with an epi pen (he had several serious food allergies) everywhere we went. We were pros at swapping out broken IV tubing, performing sterile dressing changes, and clearing air in line issues in the dark without waking the child the tubing was attached to. I knew every creaky spot in the floor and could dance through the room without a sound, kind of like a master criminal weaving through security system lasers.

First day of Kingergarten, with his TPN pumps in the backpack

We kept our GI and the emergency room on speed dial. We knew every member of the resident class at Primary Children’s spanning several years. (They made a point to come visit us when they knew we were there.) And I spent more time talking to our infusion pharmacist and insurance case manager than most of my friends.

Meanwhile, Patrick grew up, went on many adventures, attended preschool, started kindergarten, and was granted a wish.

Patrick’s wish was to visit Give Kids the World Village and Disney World in Orlando

At last, Patrick received his transplant. He not only needed an intestine, but also a liver due to damage from the IV nutrition, and since the vasculature is all one package, that came with a new pancreas, too. Remembering how HUGE an intestine is, it might make more sense to know that they also removed his spleen to make space along withhis gall bladder because that way they don’t have to worry about gall stones later. They also did a gastric bypass to help food move into the new anatomy of the gut.

As I explained to Patrick this week, they pretty much just took everything out so it was empty inside, and then put in the new organs and sewed all the parts back together. And that is a LOT of parts when you consider all the blood vessels, nerve endings and splicing back together his lymphatic system.

Transplant left the biggest scars: the long one down his tummy with the frankenstein-like staple marks and the one the size of a silver dollar where he had an ostomy for biopsy purposes.

That brings me back to the “why” questions. Because transplant and the journey to get there are why we do most of what we do.

So here’s a question we get a lot.Why are transplant patients more at risk that other people? Doesn’t a transplant cure them?

This answer was one they drilled into us. When you’re being considered for transplant, they sit down with your family and they go over all the risks and precautions that you’ll be living with after the procedure. You also commit to a lot of things to protect the graft like avoiding contact sports, not swimming in rivers and lakes, and being careful about diet.

And then of course, there are the meds. To keep the body from identifying the transplanted organs as a threat, transplant patients must take immune suppressants. Twice a day, every day. For the rest of your life. These have to stay at a constant level in the body.

At first, immune suppressants have to be at a pretty high dose. Eventually, as the body gets used to the new organs, that dose can be reduced. However, since Patrick received 3 organs (including the second largest organ in the human body) his minimum dose is still high compared to, for example, a kidney transplant patient.

Still, with a lower dose, Patrick has been able to live a pretty normal life. He could attend school, except when there was an outbreak of illness in the classroom. (His IEP provides for home learning under these conditions.) He could go to church and play adaptive sports and ride roller coasters. Granted, he and I spend pretty much from November to February sick every year because he catches everything he’s exposed to. Transplant patients get sicker and stay sicker longer, but eventually, he gets over most bugs.

But COVID… it’s a different type of virus. It sends the body’s immune system into hyperdrive. That’s what makes it so deadly. Can you imagine the effect of that in a transplant patient?

I wondered if perhaps it was my imagination inflating the risks at first. However, a few months back as they were just about to approve the pediatric Pfizer vaccine, I had the opportunity to join a webinar where researchers shared their current data about COVID, the COVID vaccines, and transplant patients. And some of their numbers were rather concerning.

First, they found that although the general population has a better than 99% chance of surviving the virus, among transplant patients, the death rate is 10%. Those odds are scary.

Even more concerningly, Johns Hopkins, in the absence of data from preliminary studies into vaccines, did a study where they measured the antibody response of transplant patients. As the researcher said in his presentation, they discovered that “we have a problem.” Only around 40% of transplant patients had any detectable antibodies following a first dose of any of the vaccines. After the second dose, only 56% did. They also found that there was a high rate of patients who resumed normal activities after they were “fully vaccinated” who went on to contract the virus.

You know when they say that most people who are vaccinated don’t catch the virus, don’t pass it on to others, and certainly don’t need hospitalization or die? Well, guess who that small percentage who do are? Yup, the people with compromised immune systems.

So EVERY communication I have with Patrick’s transplant team or GI doctor ends with a reminder. “Act like he’s not vaccinated.” “Keep following precautions.” “There’s still risk.” Just this week, Patrick’s GI ended an e-mail about lab results with “don’t let down your guard.”

6th grade was all online, supervised by Max

The thing is, everyone is ready to be done with the pandemic. WE are ready to be done with the pandemic. In fact, the more our community lets down their guard, the harder it becomes for us.

But cases are rising across the world, across the country, and definitely in the state where we live. Vaccination rates are low here and children, though not at risk of severe disease, are still carriers. Add to it that the Delta (now Delta+) variant is more contagious and more deadly. Despite our best wishes, statistics show that the virus is no longer in decline where we live.

Our alternate field trip to the bird rescue with an awesome duckling named Vinnie

We made a commitment years ago. We made it when we adopted him, again when we listed him for transplant, and again when we accepted the offered organs. We promised that we would follow the medicine, keep the protocols, and make the sacrifices to keep him alive.

Patrick’s life is a miracle. Many times over. And that miracle has been contributed to by so many people. His birth family, the NICU teams, his nurses, and pharmacists, the surgeons and infectious disease doctors and interventional radiologists and IV team who responded to emergency after emergency. The nurse who performed CPR and the code team who helped to revive him. The therapists who taught him to walk and talk and write. The family and friends and strangers who helped raise money for his transplant expenses. And most of all, the family who trusted their memory of their child to the future of mine.

In coming to understand transplant, Patrick’s come to know that he has an organ donor. The other night, he was asking me about “the other kid.” Health privacy means we don’t know a lot. But often, when I’m tempted to take some risk, Patrick’s donor and his family cross my mind. I can’t bring myself to take chances with such a sacred gift. Especially when there are so many waiting for donors who will not live to be matched.

We live with a miracle every day. But faith without works, as James wrote, is dead. So we are doing our best to do our part and be patient until we get the all clear from the miracle workers we’ve grown to trust to keep Patrick safe. Some of them are like family, so when they say wait, we listen.

Masking up for physical therapy at Shriner’s

We are hopefully trusting in the promise of vaccines. I was able to enroll Patrick in that same Johns Hopkins vaccine antibody study for kids and we’re watching to see signs of his body reponding to the shot. (With caution, as every doctor emphasizes to us that antibodies do not mean he can’t get sick.)

We are cautiously beginning to dip our toes in. We are visiting with fully vaccinated (and still reasonably cautious) family. I’ve invested in KN95 masks that fit Patrick and am letting him go to in-person physical therapy and occasional uncrowded places in off-peak hours, like the library.

We really want to begin to allow loved ones back into our world and are anxiously waiting for approval of vaccines for younger children.

We want to see you again. Right now, we’re limited contact to vaccinated people. So help us out. Get the shot. Wear your mask indoors and in crowds and around us. Avoid risky behaviors.

Be especially careful with your children. Not only can they spread COVID, but there’s an out of season cold and flu season happening as we come out of quarantine and their risk of catching another illness is higher right now. Please stay home if you have any signs of illness! (Even when we were really counting on you.)

This is an awkward time right now. For everyone. But especially for us. With the political climate and the need for extra caution, we sometimes have to turn down invitations or even walk away when risk is too high. If one of these awkward moments happens with you, please know that we don’t mean to cause offense. We’re not trying to make you feel guilty or sway your choices. (Though we really want you to be safe.) It’s just, with all other precautions taken away, we are needing to be a lot more careful.

We appreciate your patience, your love, your caution, your efforts to keep us included and show us we are remembered. We are eager to be with you again. And we are THRILLED that vaccination has brought some of your back into our lives in person. Patrick’s very best days are when we can say “So-and-so has had their shot. Let’s go do something together!” Hoping for much, much more of that soon.

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.

Diagnosis

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?”

00000PORTRAIT_00000_BURST20180219143634725

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.

In the midst of getting better, we did have one wonderful snow day where we made this snow-Boov in homage to the movie Home. And then had to nap all afternoon to make up for the effort.

Maker:S,Date:2017-10-14,Ver:6,Lens:Kan03,Act:Lar02,E-ve

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.

28337269_10157097073392785_3777483949936965483_o

Maker:S,Date:2017-10-14,Ver:6,Lens:Kan03,Act:Lar02,E-Y

Observation

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.

Transplant Day 804 and Look Ma. No lines!

**Composed yesterday in the surgery waiting room**

This is a good news post. But I’m finding myself so very out of practice at writing updates in the surgery waiting room that I am having a little bit of a hard time getting started.

At 7:30 this morning, we kissed a very drugged and giddy Patrick goodbye at the O.R. doors. He is having his port removed today. We haven’t needed it in a while. We left him with a central line because this his veins are so scarred that putting in a new line will certainly be difficult. This port has been so much healthier than any other central line he’s had before. And it saved him trauma with labwork. We didn’t feel any rush to get rid of a line

But this summer Patrick’s bloodwork started to come back so stable and consistent that his decided to switch labs to every other month, the port became more effort and risk than benefit. (They have to be flushed every 30 days regardless of if they were used.) We knew we’d need to have a talk about removing the line soon.

Last October, we took Patrick for his annual transplant checkup. When we raised asked the doctor if we should be considering taking the port out, he was surprised to find it was even still there. There was no question that it was time. Soon… But of course, we still took our time.

We allowed time for the doctors here to talk to the folks in Nebraska and know what would be involved in removing a direct superior vena cava line. We tried to wait for the end of cold an flu season.

But also at Patrick’s follow-up in October, the doctors decided to stop Patrick’s prednisolone, which was a major part of his immune suppression. Within two weeks, he started to have a severe pain in his side. After about a week, a small bump finally formed. And when we took him on a rollercoaster ride, that bump burst revealing a small abscess.

For some reason, one of the dissolvable stitches in Patrick’s ostomy scar never dissolved. It just stayed there as long as his immune system was heavily suppressed. But as soon as the prednisone was gone, his body started to rebel against a foreign body. He’s had a recurring abcess for several months now. Just a little pimple that would rise and fall. But it hurt like crazy. And that’s what finally got us here.

So here we are. An hour after Patrick went back, the surgeon was back out to report that all had gone well. He’ll have a little bit of an open wound where the abscess was an a pretty sore area on his chest until the space where the port was heals. But overall, this should be pretty easy.

We’ve taken the port for granted for the past year or so. That makes this transition a little bit simpler. But the simple realization that Patrick has IV line for the first time in his life is a little bit disorienting.. miraculous.. scary.. comforting.. umfamiliar.. splendiferous!

Now not every fever could mean sepsis. Now he’ll have to have labs drawn from the shoddy veins in his arms. Now we won’t have to wake up early once a month to apply numbing cream before the port is accessed. Now we may not have numbing cream at all. Now he won’t have to protect his chest to play. Now it matters more if he eats and drinks. Now we won’t have to worry if a clot is forming. Now he may not automatically qualify for nursing. Now there’s one less thing that makes him different from other kids.

But really, it’s about time. Because I keep forgetting that it’s time to access his port. And I keep forgetting to tell doctors he even has one. He really didn’t need it anymore.

I’ll leave you with the words of a song that Patrick is singing or making me sing at least once an hour right now.

“I feel better, so much better
Thank you doc for taking all the ouchies away.
I didn’t feel so good till you fixed me like I knew you would
And I feel better. So much better now.”

Transplant Day 216-218 and the Port

Nebraska Medicine’s scheduling is horrible for coming in from out-of-state for procedures. They don’t have their schedules far enough in advance and so we always end up booking after flights are already mostly full and expensive. Therefore, we left for Nebraska at 8 p.m. the night before Patrick’s procedure.

Well, technically, we left at 6 because security can take so long for us that we always allow 2 hours. This time, we all got precheck and, without IV fluids, were through security in 5 minutes without opening a single bag. Different.

Patrick was supposed to start fasting at midnight, so we put his feeds on in the afternoon and were encouraging him to eat so he would be less hungry. Also different.

We grabbed some Wendy’s. He scarfed down a hamburger and most of his fries. Then he and his Daddy went and watched the plane and trucks outside the window.

We boarded and things seemed to be going ok. Then, as we started to taxi onto the runway, the pilot came on and announced that there was a huge storm coming in and we couldn’t take off till it passed. So, we sat. I was so grateful we’d pushed Patrick for a nap. We sat for an hour. And he played with the sticker book I’d bought him and ate snacks and was ok.

Our gung-ho pilot got word they were taking off the other direction and seemed to jump the line by taxing right down the runway. Next thing we knew, we were first for take-off. And as soon as he got the all-clear, away we went.

We landed late. 1 a.m. Brian hurried to the rental car counter while I got the luggage. Arriving late meant no Emerald Club skip-the-counter-just-pick-a-car-and-go service. No. Instead, Brian was at the back of a very long line. He was still waiting when we got our luggage. To his credit, the guy at the counter was trying to hurry everyone along happily by giving them all sports car upgrades.

He offered us a Dodge Charger. We were not pleased. We asked for our minivan. He turned and offered us a GMC Yukon. Not a minivan. Chevy Suburban? Not a minivan. Let me see if I can find any minivan keys in here. I chimed in and pointed out that we needed to carry all of the luggage we had with us, plus Patrick’s wheelchair. He assured us the Yukon could do that. We conceded. I was glad Patrick’s no longer on TPN and therefore requires 2 fewer suitcases. Otherwise, we would not have fit. Despite lack of storage, the car was huge. Brian did not have fun driving it. But Patrick was sold. He thinks GMC’s giant SUV’s are awesome.

We got to the hotel a little before 1. Brian did his best to distract Patrick and I tried to pull off the world’s fastest getting ready for bed. Patrick was too excited to sleep.

We made it to sleep somewhere after 2. I didn’t sleep well. For the 2nd night in a row. The night before, I’d been up worrying about the port placement. Now, waiting for the port, I was up all night worrying about which school Patrick should go to. Plus, our room had a streetlight right outside the window.

At least it was bright enough that Patrick didn’t notice that the sun had come up. He slept till after Brian was in the shower. Then we got up, hurriedly got ready, and were on our way. I stopped and grabbed some fruit and muffins from the hotel breakfast on the way through.

Check-in was uneventful. Patrick was very nervous and therefore acting very angry and non-compliant. He threw his toys and yelled and wrote on things with his markers. Meanwhile, Brian and I did our best to relay all of the right information to the right people. When we got to the waiting room, I was quite proud to feel that I’d actually covered it all.

When the anesthesia resident came to put Patrick to sleep, she asked Patrick for his line to give versed (superhero medicine, because it makes you happy and brave). She said, “Don’t worry, I just want to pull your line out.” Wrong words. Patrick freaked. He didn’t want his line out. We recovered.

She gave him the medicine and he got all groggy and limp. But he wouldn’t lay down. She asked him if he could feel the medicine working. If it was making him happy. Through slurred speech, he said “No, I want some more.” She gave him more. Not because he asked. But because he was still sitting up and shouldn’t have been able to.

Our friend, Devin, who is an anesthesia resident had come up to visit, too and he walked with us to take him to the interventional radiology room. Normally, we aren’t invited that far. Except when Patrick was headed into transplant and needed a line. It was actually kind of nice.

Then, we went and waited. Brian worked. I played on facebook. Brian napped. We waited. Things went just about the amount of time we expected. Except the doctor didn’t come give us an update after the status board said Patrick was in recovery. Soon, they called us to recovery.

Patrick was doing ok, but not happy. He was nauseous. We haven’t ever done anesthesia fasting without TPN. And it’s been years since we did it without his belly to downdrain. He was feeling nauseous.

But Devin had come back to check on him. And he immediately started ordering meds to make him more comfortable. They worked pretty well and Patrick went back to sleep.

Finally, Patrick woke up enough to want me to hold him. They brought me a chair and we snuggled down while he slept off the anesthesia and the short night. He still seemed a touch nauseous, but when he woke up enough to realize that he was allowed to go, he was up. He willingly drank the cup of water the offered to prove he felt ok, got dressed, and asked for a wheelchair.

We weren’t even out of the parking lot when he started throwing up. But once his belly was empty and we were out of the car, he was ok.

Going to the hotel actually worked for rest. Their wonderful cable package included Disney Jr. and Nick Jr. so he had an ample supply of his favorite shows. He rested. Brian and I took turns napping. We were exhausted.

Eventually, he started asking for food. I offered him some saltine minis and he did great with those. I had thought we’d run to a store and get him soup. But I didn’t expect him to feel so badly. So, when he wanted to get up and move, we walked down to the hotel’s little shop to see what they had. We settled on a microwave mac n cheese.. sans cheese. And Patrick won the heart of the employee there so well that she wouldn’t let me pay her.

We also visited the hotel gym and used their balance ball and step to work off a little bit of sensory energy.

They were able to get a port in. I was excited to see that they’d used a Bard Power Port. If you know anything about lines, you know that’s a good one. He is very, very bruised. And he was really freaked out to not have a line.

He still is. Both sore. And afraid.

We did rest as per tradition. We drove to the Lincoln Children’s Zoo in the morning. (That hour drive is a great chance for him to nap.) Then, we visited Omaha’s Henry Doorley Zoo in the evening. Inbetween, we did a mad scramble to find me a skirt to turn my grubby vacation/recovery clothes into something dressy so I could to go a devotional with some church friends in Nebraska. It was actually very amazing to find such personalized messages when I was a visitor and far from home. And we topped the night off with donuts.

Then, we flew home Saturday. Before leaving, we made Patrick change his dressing for bandaids, which really upset him. But we needed to be sure his incisions looked ok.

It was a long flight home. Patrick was dead tired and didn’t want to sleep. So he did naughty things to make us respond so we’d help him stay awake.

Patrick having a hard time with this transition from Broviac to port. He has gotten angry and tearful the past two days because, now that it’s been a week, he really shouldn’t be covering the incisions to bathe anymore. Patrick has used a “bath sticker” (aquaguard) to bathe since he was 9 months old. He doesn’t understand me taking this away from him. He also won’t hug me tight. I understand the bruising and swelling last up to a month.

I’m just remembering that I was asked for a more clear explanation of this procedure. Patrick has had a double lumen broviac line. A broviac line is a tunneled central venous catheter. There is an IV in a major vessel, then the line is run under the skin to help prevent infection and hangs out of the skin. It has to be covered with a dressing and is kept clean and dry. It has two claves on the end so you can access the bloodstream without a needle. Double lumen means two tubes in the same line. It also means double the risk of infection. You maintain a broviac line by cleaning and flushing it 2 or more times a day.

A port is also a central line, an IV to the heart. But the catheter ends under the skin. There’s a little disc at the end with a rubber-like top that you can insert a needle into to access it. When you need access, you have to scrub the skin till it’s sterile, then use a special needle to get to the bloodstream. Because the disc in one place, you can numb it before so you feel pressure but not pain with access. It can be locked with high dose heparin so you only have to flush it once a month. When not accessed, no other dressings are needed.

Patrick isn’t using his line. We’d have had it removed entirely except for the risk of his veins closing leaving no place for future central lines. A port carries significantly lower risk of infection. It also means a more normal quality of life.

We knew giving up this part of himself would be hard for Patrick. The Monday before the procedure, I took him up to our hospital where his child life specialist let him play with “Chester Chest”, a medical teaching model, and several other sample ports and supplies. We talked about how we could still give medicines and draw labs.

Patrick tried negotiating his way into keeping his line several times in the next days. One day I asked him what he was worried about, and he wanted to know how I’d get to his blood. It was nice to refer back to the teaching with child life and let him answer for himself, “I will have a port.”

I still look around for ethanol locks when I give Patrick’s meds. And I’ll feel as strange as he does the first time he’s allowed to immerse his chest without waterproofing. This has always been a part of him and it’s different to not need it. Good. But different.

Exhaustion set in in the surgery waiting room

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.

Patrick loves painting.. even if usually he just puts lots of paint on top and watches it drip down the sides.

Once a month, volunteers decorate the windows. Someone suggested they let Patrick do the window outside his room. Here’s his finished product (with some help, obviously.)

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

Patrick flying paper airplanes with the ROTC.

Befana came to visit us and filled our shoes, plus delivered a couple of presents that might have been overlooked when I hid the under the beds at Christmas

A special, private playtime in the newly refurbished playroom. The heater wasn’t working, so we had to wear sweaters and hats to stay warm.

Patrick helping his favorite housekeeper, Tonya, mop his room.

Transplant Day 65 and things are moving

It is amazing, when dealing with problems of the intestine, how often we have prayed for bowel movements. We are ecstatic to announce that Patrick’s gut woke up yesterday afternoon. It seems that things are working very well so far. Patrick’s immediate reaction was to ask me if it meant he could have a bowl of soup. After a nap (giving us time to call the nurse practitioner for approval) we consented.

Life is easier with Patrick able to eat. He was really heartbroken without food so we were eating out in the hall. Now, as long as he has his bowl of soup first so his belly isn’t empty, Patrick is content letting us eat in front of him.

The plan moving forward is this. Today, they took the drain tube off of his g-tube (stomach) to see if he could make it the day without feeling sick. They also allowed him clear liquids all day. We are lucky Patrick is loving chicken broth. Tomorrow, they’ll restart his tube feeds and start weaning him back off of TPN.

It’s been a month since his lungs needed drained because of his formula, so it’s time to try the other formula, elecare, again. He needs more balanced nutrition. This could mean he needs to go slower starting feeds so that we are being really careful about not repeating that performance again. I’d guess we still have a few days here.

Sadly, though, that means that Brian will be leaving us in the hospital again. He flies home on Monday morning. I can’t believe that much time has passed. But at least he’s leaving us with things moving forward.

Today’s been a quiet day. Patrick has been kind of grumpy and contrary feeling all day. I’m not sure exactly why. I suspect it is that we have tried to go light on his pain medicine. He’s only getting tylenol right now. The other medicine controls pain well, but also slows down the gut. Patrick’s also been quite tired. Hopefully we can succeed in getting him a good night’s sleep tonight. He’s been kind of restless and jumpy and sleeps so glued to me that I can’t move all night.

Transplant Day 30 and warranty maintenance

Patrick finally got some good sleep last night. In fact, he was well on his way to sleeping all day. At 10 a.m., he had succeeded in going back to sleep again no matter the interruption. Therefore, I was in my PJ’s with hair uncombed when the team came for rounds.

I hopped out of bed and found them reviewing the imaging from yesterday. And what they saw looked like good news. The images of the gut still looked healthy throughout. The only sign of trouble was right where the stoma came through the abdominal wall. Right before, there was some dilation that showed that there was a narrowing there.

I asked what that meant they could do.. the answer was pretty straightforward. The surgeon, Dr. Mercer, could take him to the OR and open up the stoma a little more. He said he had some time on his schedule and could take care of it today.

Then, he turned around and said, “Don’t be surprised. My OR nurses are very efficient today. They may come for him in 20 minutes.”

So I called Brian who was finishing up laundry and told him to come quick, which he did. I hurried and got dressed. He got Patrick cleaned up and dressed. And then, sure enough, they came to take Patrick to the OR. The nice thing about this plan was that there wasn’t much time to worry. But it certainly scared and frustrated Patrick. It was hard to send him off knowing how worried he was.

The procedure was quick and successful. Dr. Mercer said that as soon as he released the pressure, he felt like the bowel said “Ah! That’s better!” There was a little scar tissue causing a twist and then a little bit of a narrowing in the abdominal wall and he thinks that was all the problem that was there. So now things should work very well, even when Patrick is ready to eat solid foods.

They also did Patrick’s 3rd scope and biopsy while he was asleep and reported that the bowel looks pink and healthy.

Dr. Mercer said no worries about this. Just consider it some warranty maintenance.

According to the post-anesthesia nurse, Patrick woke up and immediately asked if everything was done. Then he went back to sleep. When she called me back, he was awake again and sad. He asked me to lay in the bed. Then he told me he didn’t want to talk. So we just layed there together. I even laid with him as we came back to the room.

Unfortnately, after we got back to the room, he started to feel worse and worse. His oxygen saturation was low so they had to turn his oxygen back on. That isn’t a huge surprise given the condition of his lungs. However, it was a surprise when he started running fevers.

It sounds like his full tummy might have made him aspirate (inhale) some bile as they were intubating. We’ve seen this a couple of times with him and it’s pretty consistent. Some fevers. Maybe some trouble with his lungs called “aspiration pneumonia.”

The good news is that they are already doing all of the possible prescribed treatments. Antibiotics. Chest x-rays. Respiratory therapy. They did an x-ray and it looks good. His lungs sound good. We were able to get him settled down enough to keep some tylenol down and that has brought the fever down a bit, too.

He got feeling good enough to sit up and play with some playdough and he is asleep now. They have even been able to turn down the oxygen some. He’s also been asking to drink water, something he hasn’t wanted for well over a week… that tells me that his tummy has felt too tight for a while now and how that it doesn’t (and his mouth is dry from the oxygen), water sounds good. Thank goodness his belly is to suction right now and he can drink all he wants.

The great news is that his stoma is working great now, too. The funny thing about raising a kid with intestinal problems is that there are so many occasions to be extremely excited about stool.

Transplant day 5

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

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

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

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

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

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

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

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

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

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

Those first steps were scary and hard, but he’s getting better.

He’s figured out this posture is the best way to stay out of the way while the nurses get his lines settled

Patrick was so excited to be able to sit up and do something creative after so many days. I could barely keep up.

Transplant day 4

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

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

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

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

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

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

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

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

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

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

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

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

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

Thank you. Thank you!

How the Hoopes Family does bedrest

In addition to the 3 hours of totally immobilized bedrest, Patrick’s doctor ordered that he stick to light activity for the next couple of days just to be sure that none of the little holes they put into major veins started bleeding. Patrick does not do bedrest.

So instead, this is what we did to keep him as still as possible.

First, we went out to breakfast. Then, we got in our car and we drove, taking the longest scenic route Google maps would provide, to Lincoln, Nebraska, the state capital. We stopped and walked around the capital building.

And then we visited the Lincoln Children’s Zoo, which is, in essence a big petting zoo.

He experienced a hedgehog's quills. — He experienced a hedgehog’s quills.

Patrick got to ride a pony named Tinkerbell.

We also fed goats, petted a llama, watched the penguins feeding, rode the zoo train, shared snacks with a peacock, and of course, fed ice cream cones filled with feed to camels.

This is the wrong way to feed a camel an ice cream cone. Brian is pouring feed down the little pipe holder they gave him. The camel didn't mind much. — Put an ice cream cone on a pipe, hold it out, and the camel grabs it.

Then, we drove back taking the fastest route we could find so Patrick wouldn’t fall asleep in the car. And when we got back to the Ronald McDonald House, we snuggled down and napped until dinner time.

When we woke up, Patrick took advantage of the first break from tubes he’d been allowed in a week and played on the house playground. He didn’t mind that it was almost 100 degrees and over 80% humidity.

And then we went for a stroll on the riverwalk.

Not a bad day of recovery by any account. The next day we spent flying home. Booking last minute meant having to book Patrick’s first layover. A shame because he squeezed in his nap on the short flight and was exhausted and overstimulated through the second. But we finally made it home safe and sound Sunday evening.