Tag: scary moments

When it rains, it pours

Someday I’ll figure out why Patrick’s hospitalizations tend to concide with 1)holidays and vacations or 2)periods of stress for me.

If you don’t know, Patrick was hospitalized last week because of another bacterial infection in his bloodstream. The good news is that it quickly responded to antibiotics, quickly grew so it could be identified and more accurately treated, and therefore he quickly was back to himself. This infection was a reminder of how Patrick gradually is becoming more fragile the longer he waits for transplant, though. His spleen wasn’t very happy with this particular infection – just one side effect of residual liver damage.. and it started to cause his blood counts to fall. So even though the infection was caught and treated very early, we still had to keep a very close eye on him for a couple of days.

We took him home on Wednesday and he’s been doing pretty well since. That gave me a few days to really work hard on catching up on some impending deadlines and to deal with some unexpected problems.

Brian was complaining about the car not accelerating the way it normally does the day we brought Patrick home. He made an appointment to take it to the mechanic this week. That appointment is for tomorrow morning. Sunday morning, instead of making it’s usual complaining noises, though, it started to spew clouds of white smoke so think that I can’t see the car behind me.

Brian had business meetings in L.A. today, though, and I didn’t dare be without a car that Patrick’s carseat fit into. So we agreed to take his truck for a tune-up yesterday so that it would be in good condition should the car be gone for a while.

Well, an hour before I left to pick up the truck today, Patrick woke up from a nap fussy and feeling warm. The thermometer read 100.2, which is not technically a fever.. but added to the fact that today was the last day of his antibiotics and the fact that he’s been fussy since 4 a.m. I made a call to his GI to see if they wanted to test to make sure the infection wasnt recurring.

In the end, his doctor recommended that he come back to the hospital for observation. So – here we are. They’ve drawn blood cultures and done a test for respiratory bugs as well. And we’re hanging out here waiting to see what they find. Meanwhile, my car is sitting outside the mechanic so they can start work on it first thing in the morning. I’ll be surprised if the repairs for this come in under $1000. And my deadlines will just have to wait for a little while.

One thing about it, though.. if we were at home, I’d be up all night monitoring Patrick’s temperature and the other vital signs I know how to check. Here, the nurses will do that and Patrick and I can hopefully get some rest.  And hopefully by morning Patrick will be well and ready to go home, my car will be diagnosed and on it’s road to recovery, and I can get back to simpler things like following Patrick around moving his backpack so he can work on his crawling skills and teaching him to eat vegetables.

Our Seattle Adventure

As many of you know, Patrick had an appointment for a check-up at Seattle Children’s this week. He was scheduled in clinic for about two hours Tuesday afternoon. We decided to try to make a family vacation out of this trip (since we haven’t had a vacation since adopting Patrick.) I think we need to stop saying the word vacation in our household. It seems that Patrick thinks that vacations are taken in the hospital – this trip did not go as planned.

We flew to Seattle on Sunday. We rented a mini van and drove to visit our good friends, the Laylands who live half an hour north of the city. We had a good dinner and visit with them and then spent the night at their house.

As soon as the plane touched down in Seattle, my nose started to run. At first I was sure it was allergies, but by the next morning there was no question that it was a cold. But, we were determined to have a vacation, so after a quick stop at K-Mart for some cold medicine and other things, we set off for the city.

After picking up some much touted Mighty-O donuts and checking into our hotel, we headed to the Seattle Aquarium. We were in the first exhibit, a sort of aquatic petting zoo, letting Patrick play in the water and touch sea creatures when I looked down and noticed blood on his PICC line. Closer examination revealed that there was something wrong … there was definitely a leak.

So I made a quick call to our transplant coordinator and we headed back to the ER, leaving a very patient Lindy and her daughter stranded in downtown Seattle to avoid exposing them to hospital ER germs.

We were checked in quickly in the ER and sent to an isolation room at the back because of Patrick’s and my cold symptoms. Soon the IV team came to look and confirmed that Patrick did, indeed, have a cracked PICC line. And it could not be repaired.

As a result, Patrick needed to have a peripheral IV put in until he could get another central (goes to the heart) line. And he needed to be admitted to the hospital because you can’t get as good of nutrition through just a hand or foot.

Wednesday afternoon, there was finally room in the schedule to take Patrick to “Interventional Radiology” where they could place a new PICC line with X-ray imaging to guide them. They took Patrick down at about 3 p.m. At 5:30, a doctor came to the room to talk to us.

He explained that they had tried to pass the wire through Patrick’s vein to put in the PICC line and had run into resistence. So, they injected contrast into his veins and saw that there had been a clot. In response to the clot, Patrick’s body created a branch of smaller vessels to route the blood where it needed to go. This meets the body’s need, but doesn’t leave enough room to put a catheter into the vein to the heart. Because of this, Patrick can no longer have PICC lines in his arms.

They put a little bit more stable of a line in his arm then that wouldn’t go bad as quickly as an IV in his hand or foot and then gave us two options: stay here and have a broviac line put in, or fly to Salt Lake, be admitted there, and have a broviac put in.

We decided that it was best to just stay and have it done here in Seattle. The surgeons here had gone into the PICC placement procedure and had seen the problem first hand. Having Seattle Children’s put in the line also meant that he’d have it done sooner, since he could be put on the next day’s list.

Beyond that, in order to place the line, they needed to do an ultrasound study to see what Patrick’s remaining central blood vessels looked like. Since not having many available blood vessels moves you up the transplant list, we thought it was wise to have the transplant hospital have a record of what options remained.

So – yesterday Patrick had a new broviac line put in. He went to surgery about 3 p.m. and they were able to put the new line right where they wanted it. When I talked to the surgeon at 5 he sounded pretty good about how the procedure had gone.

There had, however, been one slight problem. Patrick’s stomach still doesn’t easily drain all the way. Even though he hadn’t eaten anything, and his stomach had been suctioned, it still wasn’t empty. As a result, he aspirated during the procedure. The surgeon said that they’d been able to clean out his lungs, though, and didn’t seem overly concerned. With any aspiration, there is a risk of pneumonia. He asked to keep Patrick 24 hours for observation, and then said he’d be able to go home.

I went to Patrick’s room to wait for him. When he finally made it upstairs, he was very upset. He’d curled himself into a little ball and was crying miserably. The nurse immediately set to work getting pain medications for him. And we decided to put him on monitors.

Things just seemed to get worse. The monitors showed that the oxygen levels in his blood were dropping, so we put an oxygen mask near his mouth to help keep them up. His heart rate was rising. He was breathing very heavily.

The nurse called in other nurses to help her and started taking vitals… And discovered Patrick was running a fever. They called down his doctors. While I explained the scarier things in Patrick’s medical history, his nurse wandered around the room making space to work if things got worse.

They ordered blood cultures to look for infection, gave Patrick some Tylenol, and got an X-ray of his chest.

Finally, they called the “Rapid Response Team”, which is a team from the PICU who come to the bedside. They watched him, took some tests bedside, and promised to come back to check on him within the hour.

Once all of the tests were done, I picked Patrick up again and he finally started to calm down. They started antibiotics while I rocked him to sleep. His heart rate was still high, and the antibiotics were making his blood pressure low, but he seemed to be starting to feel better.

As things started to settle down, I asked the nurse to help me reach elders from my church. One of the doctors in the room had mentioned earlier in the week that he had gone to school at BYU and we’d talked about how we’d been there the same year both studying Spanish. He spoke up and said “I can take care of that for you.” It was subtle, but we both understood that he was telling me that he was an elder and could help me with what he knew I was going to ask for.

In the Church of Jesus Christ of Latter Day Saints we believe in the gift of healing by the laying on of hands by those who have authority from God. Brian is an elder in our church and had given Patrick one of these special blessings before he left. And this kind doctor subtly waited around until the nurses had left the room and then layed his hands on Patrick’s head and gave him another blessing, confirming the promises of health and comfort and strength.

Patrick slowly began turning around. His fever dropped and he started to sleep comfortably. A respiratory therapist came and tried to get Patrick to cough by pounding on his chest and back. Finally, she suctioned deep down into his chest and helped to get a lot of what was in his lungs out.

By midnight, Patrick was sound asleep. I stayed up to help the nurse get a few more things settled and went to bed. We slept till 7 a.m., when the doctors came in to check on him.

This morning, Patrick woke up with a smile. He was a bit weak and groggy at first, but has just gotten better and better all day long. Just an hour ago, he was climbing all over me on the couch in the room playing with toys and jumping. You would never know anything had been wrong.

The doctors are pleased enough with his improvement that they gave me the go ahead to book a flight back home for tomorrow. We’ll leave the hospital a little after noon to catch a 3:45 p.m. flight.  We should be home by 6 p.m.

I almost hate to write this because any time I’ve said that we were doing something this week, things have changed. But this time it feels like we really are going home. And I’ll be happy to be there.

I do have to share one example of the goodness of people in this world. While Patrick was in surgery, I put some of our clothes in the laundry room here. I got it as far as the dryer, but then when Patrick came back in such bad shape from surgery, didn’t make it back to it. I expected, when I headed back at midnight, to find my clothes piled in a basket somewhere. Instead, someone had taken the time to neatly fold them for me. This touched me because any parent using the laundry room here is doing it because their child is sick enough that they’re expecting to stay here for some time. The person who folded my clothes was certainly going through their own difficult time and would have been totally justified in being upset and offended at someone leaving clothes in a dryer. Instead, they took the time to make my day a little better.

This is just one example of the kindnesses that make raising a child with health problem so very rewarding.

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.