Tag: Primary Children’s Hospital

Festival of Trees

The Festival of Trees is a big Christmas tradition here in Utah. Groups and individuals decorate and donate trees, wreaths, crafts and more. They’re displayed to the public for a week, and available for sale. All proceeds from sales, admissions, and goodies sold are donated back to Primary Children’s Hospital to help families in need.

We took Patrick to the Festival tonight. He wasn’t so sure about the crowds and was only vaguely interested in the trees. He did really like the chains used to protect the trees and the excuse to ride with Daddy and pull Mommy’s hair. At the end of the evening, we took him to meet Santa, which was a pretty good 1st Santa experience. Patrick loved his beard and sleigh bells.

This year’s Festival was a bit bittersweet for Brian and myself. There were a couple of trees there honoring friends’ children who passed on this year. Those brought tears to our eyes. It meant all the more to know first-hand the tender moments that happen in a children’s hospital. Just one way that Patrick has changed our lives and hearts for the better.

Adoption Reflections: The journey home

I think this will be the last in my adoption reflections series.

Things started to come together quickly once the court granted us full custody of Patrick. The adoption agency put in a petition for something called an “interstate compact” or “ICPC”. Basically, Michigan and Utah had to formally agree on which laws would govern the adoption. Meanwhile, the hospital social worker and discharge planner started working on the bigger question of how exactly we’d get Patrick home.

Patrick’s care needed to be transferred to specialists in Utah. He needed doctors here arranged and home care set up before he could leave the hospital environment. That meant he couldn’t just be discharged from the hospital so we could fly home commercially.

Eventually, it was decided that our best option was a medical flight. It took some juggling, negotiating, and everything short of outright begging to come up with the $20,000 cost of the flight, but eventually between our insurance company, a private donor, and our own savings, we had enough to book the flight.

Two days before Thanksgiving, the ICPC and flight were arranged, Patrick had a bed and a doctor at Primary Children’s hospital. We were coming home!

There wasn’t room for both of us and our month’s worth of luggage on the flight home, so Brian flew home Tuesday evening with the luggage. I stayed behind to take care of Patrick.

We were scheduled to fly out early in the afternoon on Wednesday, but some bad weather put the flight crew behind so it was after midnight before we left. We bundled Patrick up as warmly as possible. Then they strapped him to a stretcher. We went by ambulance to the airport, where a Leer Jet was waiting. We flew at 70,000 feet to stay out of turbulance. Patrick just slept the whole way.

Finally, we landed in Salt Lake and took an ambulance to the hospital, arriving about 4 a.m.

It was so disorienting to be in a new hospital. Nothing was familiar. I was tired and somewhat lightheaded from the long trip.

Brian met us at the hospital, and once we were checked in, took me home to rest. Leaving my baby all alone in an unfamiliar place was probably one of the hardest things I’ve ever done. But I knew I had to take care of myself.

After a couple of hours’ sleep, we got up and got ready for Thanksgiving. I finally got to see the nursery Brian and our friends had put together for us. We took hundreds of pictures with us to Thanksgiving dinner. And then, once we were rested and fed, we went back to the hospital – where’d I’d spend most of my days for the next 2 and a half weeks.

For the first time, it was our last name on Patrick’s nametag. We were just the parents, not the “adoptive parents”. Our families got to finally meet him. It would be a couple of weeks more before he left the hospital, but Patrick was home.

This year, he gets to come with us to his first ever Thanksgiving dinner. Two of them in fact! We’ve come a long way to get here. Probably the best journey I’ve ever experienced.

Adoption Reflections: Getting to know you

I left off my story the night before Brian & I flew to Michigan.

Saturday morning, Brian and I got up before the sun. We went shopping for a few more baby things and for some presents for Patrick’s birth family. Then we went to the airport.

It was so strange waiting in line with a carseat, but no baby. In fact, the sight of us juggling so much luggage and an empty carseat drew some attention. A very kind man ended up helping me in line while Brian was off getting some money at the ATM. We were talking about our reasons for flying. He was taking equipment to Africa where he was going to teach people in 3rd world areas to build and maintain wells. When I explained why we were flying, he was in awe. It was very strange to meet this great humanitarian and have him be impressed with what I was doing.

We were flying standby, so Brian ended up about 10 rows behind me. I remember hearing him telling other passengers why we were flying and thinking “This is all so surreal.”

The amazing thing was, for all I was nervous, it was also all so peaceful. I’ll always remember how beautiful the fall leaves were on the trees as we landed.. and how right everything felt.

It was evening before we got to our hotel room, and then to the hospital.

We arrived and explained why we were there and were shown to a family waiting room. Where we waited, and waited, and waited. Finally, we met Patrick’s birth family… his mother, grandmother and aunt. Our timing couldn’t have been worse. We ended up arriving in the middle of a family crisis. But they amazed us with the grace and kindness they showed us.

We talked to the head of the NICU and to Patrick’s family for a while…learned more about his medical needs, and then finally got to meet Patrick.

I remember thinking that he was SO tiny! Just this fragile little ball of baby, with a head full of black hair. I got to hold him that night and was just amazed by him. We also got to know his birthmother and her family a little bit.

Soothed by my paci

We went back to our hotel a bit overwhelmed and not sure what to do. We were overwhelmed by how much of his medical status we hadn’t known… and by the whole situation in general.

But, we’d made a committment to give Patrick a day, and so the next day we went back to the hospital. We explained to the nurse that we’d like to learn all we could about caring for Patrick, and she was wonderful about giving us that chance. She taught us to change his diapers (around tubes). And she let us hold him.

Brian and I each got some time alone with him that day. I remember holding and rocking him and singing to him the words of a children’s song:

“I am a child of God,
and He has sent me here,
has given me an earthly home
with parents kind and dear.”

And my heart broke at the idea that Patrick didn’t yet know where his earthly home and parents were. And I didn’t know if I was able to provide that for him or not.

As the evening wore on, the head of the adoption agency finally came. She’d gotten word that no one from the agency had really acknowledged our arrival. She explained to us Michigan’s adoption laws, and what she knew of Patrick, his medical needs, and his birth family.

While she was there, two elders from our church arrived… courtesy Patrick’s grandma. (I’ll forever be indebted to her for sending them). They came to bring us the sacrament, and while they were there gave us priesthood blessings of comfort.

We visited with the adoption supervisor for hours, and then went back and spent a bit more time with Patrick. Then we went back to our hotel.

That night, as we were sorting through the dozens of pictures we’d taken that day, one jumped out at me. I looked at it and just KNEW that I loved this baby! And that I wanted him to be my son.

First days

Monday morning, we went back to the hospital. Finally people were there! We met more doctors, the hospital social worker, and the care manager who’d help us to get Patrick home. Calls were made to Primary Children’s to see if the doctors in Utah could take care of Patrick. His surgeons came and talked to us about Short Gut and transplantation. Finally we felt like we were getting a grasp on this situation, and amazingly, we felt like it might be something we could do.

Then we had the big decision to make. The night before, the woman from the adoption agency had explained that the papers we’d signed in Utah would expire if they weren’t filed on Monday. Besides, Brian had to fly back to Utah that afternoon for a conference at work. We had to make a decision before he left for the airport about whether or not we were adopting Patrick.

We held a “family conference” that morning… Just Brian, Patrick and I. We talked about the decision we were facing… and the fact that we felt ready to move forward. Then Brian turned to Patrick and asked him if he’d like to join our family.

He had been sleeping, but he opened his eyes and kind of looked at Brian, as if sizing him up. Then settled back down to sleep in his arms, as if totally content. We took that as a yes.

We asked our nurse to take our first family picture.

At 1, Patrick’s social worker from the adoption agency and the hospital social worker met with us. We didn’t have much time, so we signed papers in a hurry. Then we left to take Brian to the airport.

And that was it… Brian kissed me goodbye at the curb and said “Take care of our son.” We had a son! One with far more troubles ahead that we could imagine… but one who also just filled every room he was in with the feeling of peace and joy.

We’ve never looked back. Patrick is our little boy and we love him with all our hearts!

A Sick Day at Home

Patrick stayed home sick in bed on Monday. This would be pretty boring news for another kid, but for Patrick, this is only his 2nd ever sick day at home.

When I put him to bed Sunday night, his temperature was in the 99’s. If his temperature reaches 100.4 degrees farenheit, that is considered a fever and requires quick action. With a central line, a small fever could be a life-threatening blood infection that can turn deadly in the matter of just a few hours. If a fever reaches 101, we go straight to the hospital and say there at least 2 days.

Monday morning, Patrick’s temperature was still high, but sat just on the brink of a fever. So instead of running to the doctor, I put him in my bed with his IV pole connected, in addition to the TPN in his backpack, so that I could give him fluids to keep him from getting dehydrated.

He didn’t feel well, so he just layed there and napped and looked at books and watched Baby Einsteins. Meanwhile, I got on the phone with Patrick’s medical team. I talked to the nurses in the GI clinic to get blood cultures ordered, and then his home nurse to arrange for her to come to give them. I called his dietician to let her know that his stomach was upset and I was having to pour extra fluids into him. (This can make a difference in his electrolyte balance, which can be life-threatening.) And then I talked to his doctor, who was at home sick with the flu, but more than willing to work with me to make sure he stayed safe at home, or could go quickly to the hospital if needed. Then a conversation with his homecare pharmacist to arrange for a dose of antibiotics and some extra fluid to be delivered, and a call to the pharmacy at Primary Children’s Hospital to get some oral antibiotics too, for his belly.

I played nurse all day long. I spent a lot of the day in bed with Patrick to keep him comforted, and to watch for signs that he might take a turn for the worse. But he stayed grumpy, but stable. I also took his temperature at least every half hour.

Nursing duty spilled into the night. Brian and I took turns sleeping in Patrick’s room with him. He slept better that way, anyway, plus it meant that we could keep a closer eye on him.

And amazingly, by morning his fever was gone and he was starting to feel better. So far, nothing has grown from his blood cultures, so the gamble to keep him home seems to have been one work taking this time. In the peak of respiratory/flu season the last place you want to go if you don’t have to is the hospital. The chances of picking up a new bug and ending up back in the hospital are always there.

We’re still not sure why Patrick wasn’t feeling well. I wish sometimes he could talk. I know his stomach was upset, and that he seems to have increased problems with his motility. He’s also cutting teeth, which could have played a part in all of it.

Still, we’re happy to be home… To have been able to stay the day in bed at home, even if it did mean 2 days of hefty nursing duties and missed sleep for me. And we’re grateful for a motivated healthcare team who jumped right in to make sure that Patrick was able to stay safe and sound at home.

The good news that came out of this for Patrick was a decision that it might help to stimulate his motility to feed him. So he’s getting his little half teaspoon feeds again. Kind of the opposite of what you’d do for a healthy kid with an upset stomach. But that’s just Patrick’s life. He is THRILLED to be eating again and savors each bottle.

Home Sweet Home

We were able to bring Patrick home again yesterday afternoon. My apologizies that it comes as such a surprise. Patrick’s surgeon was out until last Thursday, and we didn’t see him till Friday. The other surgeons led us to believe that we’d need to stay in the hospital until Patrick no longer needed his stomach drained to compensate for his too narrow large intestine.

When Dr. Rollins, the surgeon, came in on Friday he said he’d like to get us out of the hospital as soon as possible. However, weekend discharges are difficult and don’t often happen.

Dr. Rollins called Patrick’s GI, Dr. Jackson, in to give his recommendations and, well, Dr. Jackson always wants us home whenever possible. Despite all these recent infections, Patrick has a pretty good track record of staying healthy at home. So Dr. Jackson always prefers that he be here, especially with RSV and flu season upon us.

And so, much to everyone’s surprise, including ours, we brought Patrick home yesterday.

He is on erethromycin (don’t know that’s spelled right), which causes the stomach to contract… the idea is that it will help improve motility through the intestines. And he has a g-tube extension attached to the button in his stomach. This gives his stomach a sort of release valve for when his stomach contents build up too much. We put it to drain periodically throughout the day, though the goal is to keep that at a minimum.

So – my care of Patrick has changed, but is still very time intensive. And as he gets better and has more diapers to change and is allowed to eat, I expect to get even busier.

He’s doing great! It’s amazing to me to see him willing to play on his stomach now that the ostomy is gone. He’s also become quite good at sitting. It will be different to experience this new level of activity here at home.

Another infection

I’m writing from Primary Children’s hospital again. Tuesday afternoon, Patrick started to act as though he had an upset stomach. I got him settled and he took a nap, but before long woke up upset again. So, as I always do, I took his temperature and lo and behold, he had a fever.

I made a call to the GI on call, Dr. Pohl, and he made arrangements for us to check in to the hospital directly, without going through the E.R.

It was strange to come in without the E.R. routine, but kind of nice, too. The infant unit was full, so they put us in a room in the Children’s Medical Unit just down the hall. As usual, the first few hours were chaos as I gave history, got meds and supplies ordered, and generally got acquainted with the medical staff.

Typical protocol is to draw blood cultures to look for and identify the infection he has. So they call IV team and they draw blood from a vein while the nurse is responsible for drawing blood out of Patrick’s PICC line. They also draw blood to check levels of other important things like blood sugar and electrolytes through his PICC.

Well, Patrick’s PICC line has been tricky and occassionally with clot and not draw back. In this case, neither lumen would draw back. So about 11 p.m. they started soaking it in something to break up clots… but it still wasn’t working.

Finally at midnight things were pretty quiet, even though they didn’t have labs, and I decided I’d better try to get some sleep.

About 2 a.m. things got exciting again. First, his diaper leaked. Right now, Patrick’s ostomy doesn’t have a bag on it (that’s a story in and of itself) and so I had to get up to change it because the combination of creams and powders required to protect the skin against what is essentially stomach acid is pretty complex and not your standard nurse’s experience.

While he was awake, they took his blood pressure and it was frighteningly low.  They checked it about 20 times over the next stretch of time and even though he was awake and uncomfortable, which should raise blood pressure, his was low.

So they finally got his PICC line to draw back and drew some emergency labs to look for dangerous things like low blood sugar, drew blood cultures, and called the ICU to come look at him.

A doctor from the PICU came and looked at him and checked his blood pressure and said that he needed to go downstairs so they could give him medicines to bring his blood pressure back up.

So, at 3 a.m. we packed up and transferred to the PICU. It was odd to be there in my PJ’s giving his medical history. Finally at around 5 things were pretty stable and they recommended that I go get some sleep. So I went and crashed on one of the beds in the parent waiting room.

The next day they explained that sometimes infections cause your blood pressure to drop. Patrick responded very well to the medicines they’d given him, though, and was pretty stable. However, everytime he went to sleep, it would drop again.

Finally after being in the hospital for a full day, the antibiotics started to work. He started to act like he felt better, and his blood pressures came back up.

Thursday afternoon he was doing well enough that they moved him back from the PICU to the Infant Unit. Which is where I’m writing from tonight.

Patrick obviously feels MUCH better! He’s been back to trying to sit and stand and he’s getting stronger and more coordinated all the time.

The tentative plan right now is for us to go home Saturday. As always, when we leave the hospital, all of the nursing duties fall back on Brian and myself, with help from friends and family where possible. He’ll be on two antibiotics and an antifungal because of a diaper rash developing that is most likely yeast. (Antibiotics create the perfect environment for it to grow). With meds every 6 hours at least, sleep will become a very rare commodity again. Of course, as I’m posting this in the middle of the night, you’ll see that it already is.

We’re grateful that this bug seems to be one of the less scary ones. It’s called enterococcus, which lives inside the gut. It most likely either translocated (leaked) into the bloodstream from his gut or got in by accidental contamination of his IV tubing. Any way it goes, it required just 2 antibiotics to treat and Patrick’s central line so far can stay in. In those regards, we consider ourselves very lucky.

Of course we’ll do all we can to keep you updated on what happens from here. Thank you again for all of you do for us.

Re-evaluation at Seattle Children’s

Sick boy on beanbag

You may have heard that Patrick had a day of office visits scheduled at Seattle Children’s hospital last week. After his cardiac arrest and the many complications that followed, they wanted to see him again to see if anything had changed that would affect his transplant status. They also wanted to look to see if he needed to be listed for a liver transplant.

Daddy & Patrick in the ERWhat you may not have heard is that Patrick was hospitalized Sunday night with another infection. This time it was a staph infection which, if caught early, can be treated through his central line and clear easily or, if more established or more resistent, could become a very persistent infection that can hang on for months.

I called Seattle Children’s and tried to reschedule our appointment. However, Dr. Horslen was going to be away for the next several weeks and they didn’t want him to stay inactive on the transplant list for that long. After a few days and some discussion, we made the decision on Tuesday to have Patrick admitted at Seattle Children’s so they could both treat the infection and do the evaluation.

We got the final go ahead late in the day Tuesday. I was up till 1 a.m. packing.  Wednesday he was discharged from Primary Children’s with just time to go directly to the airport. The flight went well. They only real difficulty was that Patrick’s ostomy bag started leaking at takeoff. Well, and that I got a tad bit lost in the airport because we landed in the international terminal and airports aren’t as well marked when you have to take the back elevator routes.

Nevertheless, we arrived at Seattle Children’s around 6 p.m. – just as they were changing shifts. We met part of the medical team that would be following him and, as usual, wowed them by giving them in writing all the information they really would need. It took some time to get orders written, so we had another late night as labwork and meds came trickling in. It was about 2 a.m. before we made it to bed again.

Smiley in SeattleThe nice thing about being inpatient is that it gave me a sense of what things will be like during his recovery after transplant. We started with an early abdominal ultrasound, specifically a doppler. Yes, this looks a bit like the weather map images, only it shows the flow of blood through the veins. They were looking to see if portal hypertension was developing. (As the liver scars, it starts to send blood through other vessels creating extra blood pressure through them. It can cause lots of complications.)

The team rounded about 10 a.m. It was a big group, about 15 people, including his GI Dr. Horslen, his transplant coordinator, nutritionist, and others who specifically follow him. They had looked at the ultrasound and the labs from the night before and at his labwork. Both looked as good or better than they had in April.

Dr. Horslen came back later in the day to talk to me and said he was very glad we’d come. He’d imagined he’d find Patrick in much worse shape after the reports he’d been getting. He did a physical examination, too, and then said that he didn’t think Patrick’s liver was really in bad shape yet. He said that the problems with his spleen were probably mostly due to the many months of infection that Patrick has been through, meaning that hopefully when he’s healthy, his spleen will improve, too.

We discussed other goals, too… including taking down Patrick’s ostomy and replacing his PICC line with a broviac line when he could have surgery. We’ve been going the rounds on the question on whether or not Patrick should have his g-tube removed, too, before portal hypertension makes it bleed and be more difficult to close. However, Dr. Horslen said he was under the impression it was unused when he recommended that, and that if we were using it, he’d be ok with us leaving it in.

It was great to talk to him and to watch him play with Patrick. Not only is he brilliant, but he has a wonderful bedside manner. It made me happy to remember that there was at least one big reason why we chose Seattle Children’s for transplant.

We also had visits that day from the nutritionist and a care coordinator. And then in the afternoon we got to have a little bit of lazy time. Child Life brought Patrick some bubbles and it was fun to watch him experience those for the first time.

When the nurse came on the night shift and Patrick was playing with her while she took vitals she frowned and said “Do you really have to go home tomorrow?” I was surprised because I’d expected to need to be there at least through the weekend… But before midnight they had me making lists of what would be needed for me to be able to go home on the 5 p.m. flight the next day.

Rounds in the morning confirmed that they felt Patrick could go… assuming that we made sure he got a visit from Dr. Reyes, his surgeon.

The rest of the morning I packed and kind of waited for word that we were really going. A volunteer came to play with Patrick so I’d have hands free. About noon, I still hadn’t heard one way or another, so my nurse started making calls for me. I looked at flights and now there was only 1 left and the price had doubled. But – the insurance company agreed they’d rather pay for extra airfare than another night in the hospital – and so I started working on booking a flight home.

Dr. Reyes came in about 1. We talked again about the importance of taking down Patrick’s ostomy. He told me a bit about starting intestinal transplants in Pittsburgh 15 years ago. (He was on the team that did the first ones.) And he explained how they’d learned that the surgery wasn’t really effective without a strong GI team behind it to make sure the patients stayed healthy. He also explained that one thing they’d learned in that time is that survival rates are better without an ostomy.

I ran our other surgical plans past him (liver biopsy, broviac line, and possibly g-tube.) He looked at me and said, “Leave the g-tube in. He’ll need in later.”  So I guess that settles that.

He left and I immediately went back to booking a flight. Meanwhile, the care coordinator came and brought me a cab voucher. My nurse got Patrick ready and booked the cab while I got the ticket. And I literally hung up the phone, put away a few things, and walked out the door.

Flying HomeThe flight home went smoothly. Howie was there to meet us. We had some adventures waiting on the way home including a flat tire, a broken jack, and eventually a tow home. But at last, we are home.

They discussed Patrick’s transplant status in their meeting yesterday. They were ready to move him back to status 1 for a small bowel. They will not yet list him for a liver. When they checked his labs, though, they found a blood culture positive for infection… so the doctors are discussing what to do now. He’s not sick and it could have been a contaminated sample. But they have to work that out before Patrick’s listing is made active again. Time will tell.

How everything changed in a moment

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A lost central line

I need to stop promising to write about transplant. Whenever I do, Patrick gets sick and we end up back at the hospital.

Thursday in the middle of the night Patrick woke up crying the inconsolable cry he only uses when something is wrong. As usual, we immediately started looking for signs of a line infection. However, his temperature wasn’t even 100 degrees (100.4 is the least his doctors consider a fever) so we fed him a bit and I sat up with him and eventually he went to sleep.

When he woke up in the morning, something was definitely still wrong, but he still didn’t really have a temperature… just didn’t want me to put him down. As we always do when he’s sick, I held him and took regular temperatures. Around 10:30 a.m. his temperature hit the magic 100.4 and I started making calls to get blood cultures drawn. Usually we have some time if we catch it that quick. However, as I started to try to make plans, his fever kept rising. At 101 I started packing for the hospital, at 102 I put some hustle into it and by the time we made it out the door his temp was 103.

Being our 3rd fever in a month, I wasn’t too happy about the return trip to Primary Children’s.

When we arrived they checked his vital signs and then they did something they’ve never done before… instead of finishing the standard check-in process, the triage nurse disappeared for a minute and then came back and took us straight to a room. And not the typical room, either… They took us into one of the “resuscitation”, a.k.a. trauma, rooms. Patrick’s temp was over 104 and his pulse near 200. He had a serious infection and was in shock.

They quickly worked to cool him down with cold packs and fever reducers and eventually he was looking and feeling better.

Labwork revealed that Patrick had a yeast infection in his central line. Since yeast gets into the plastic of the line, it had to be removed. It has to stay out we are sure the infection is out of his blood. In the meantime, he has a peripheral (in the hand or foot usually) IV. You can’t give full TPN through this type of IV so he’s getting a sugar/saline solution instead.

So now we are in the hospital waiting out the infection so that Patrick can get to feeling better. He doesn’t get as much sugar as he’s used to so he’s lacking energy. The IV antifungal medicine upsets his stomach we think. He’s getting rather stir crazy. The two things that bother him the most, though, are 1) the blood draws they wake him for at 6 a.m. every day and 2) the splints on his foot and hand to keep him from damaging his IV.

He’s just not himself these days. Keeping him calm is a 24/7 job for me. I’m basically living at the hospital while Howie works, manages the house, and does his best to take care of me. But we can’t imagine doing it another way… Patrick is fighting hard to get healthy and needs support in the fight.

I have to share one example, though, of Patrick’s indominable spirit. This morning we added the IV to his hand and so he woke up to having a splint put on that immobilizes his left hand. For the first part of the day he’d look at his hand and just whimper… he’d try his best to hold it still. Finally later in the day the nurse helped me get some toys that work with the touch of a button so he could use his splinted hand to play with them. After some work with that he started to get a little more adventurous.

He got a wrapper in his free hand and was playing with it and, after some work, he managed to hold the wrapper with the fingers on his splinted hand. He worked on that for a good 15 minutes, then he reached over and grabbed my hand with his free one. Using his new skill, he put my finger where he could hold it with the fingers of his splinted hand.

Patrick is an amazing kid. This is one of the hardest trials we’ve seen him go through so far… However, tonight’s adventures show me that he is determined to push the limits that his imperfect little body give him.

We hope that he’ll be able to stay healthy for a couple more days, have a new line surgically placed midweek, and then be able to come home for the final weeks of his recovery from this infection. If any little spirit is strong enough, Patrick’s certainly is.