infections – Page 2 – Patrick Hoopes

Not again!

Infection is a vicious cycle! The cure makes you vulnerable for further infection. A couple of posts ago I wrote about a bacterial infection that hadn’t been fully treated by antibiotics back in February. Well, at the beginning of last week that same infection grew back yet again! We don’t know exactly why, but as a result we spent a few days in the hospital while they worked out a treatment plan that would help to knock this infection out for good.

The plan included a change to the antibiotics he takes to control overgrowth of bacteria in his gut and a regimen of super high dose IV antibiotics prescribed for the next 6 weeks.

We were sent home on Thursday without Patrick ever having really been too sick. We joked that it must be time to plan a family vacation because with so many antibiotics, how could Patrick possibly get sick again?

That’s what we get for uttering the word “vacation”. Tuesday of this week Patrick wasn’t a very happy kid. He followed me around all day just wanting to be held. That night, he got another fever. At midnight, when it was rising, we called one of our favorite doctors at the hospital, Molly O’Gorman. She also couldn’t explain the fever, given the antibiotics, and so she recommended we stay at home till morning with the hospital would be less busy. So, we gave him some Motrin for his fever and I set my alarm clock to get up every hour to check to make sure he was still ok.

At 5 a.m. Patrick woke up just screaming. By 6 his fever was back and climbing rapidly. We gave him more Motrin to keep him from getting into even more danger and took him to the ER. He seemed to feel ok with the Motrin and the doctors were stumped as to the cause of the fever. But throughout the night he just got sicker and sicker. Every time his fever reducers wore off he’d have chills and high fevers and nausea.

His first night in the hospital was just miserable! I think we slept a whole 3 hours. By morning, the blood cultures came back with a definitive result, Patrick had a yeast infection in his central line.

For those of you who don’t know, Patrick fought a yeast infection for most of last summer.. and almost lost that battle. Yeast has to be the scariest bug I’ve ever seen him with. Unfortunately, this infection doesn’t seem to be much of an exception.

Yesterday was an eventful and stressful day. Because yeast loves to set up shop in catheters, Patrick’s central line had to be taken out yesterday. He’s strong and wiggly and fiesty enough now that he has to be sedated for this to happen.

This had a few ramifications for him. First, he had to have a transfusion. His spleen gets greedy whenever it’s sick and he becomes anemic. He’d fare ok for normal things, but in that state would not have been strong enough for anesthesia. The transfusion helped his blood counts, but it also further fed his blood hungry spleen and as a result he’s all puffy , swollen and sore today. His belly is hard as a rock and hurts, too.

Also, Patrick still has to have IV’s to keep up his blood sugar and give his medications. Right now, he needs 1 all the time, and 2 most of the time. But between the scarring and damage to his veins from previous IV’s and the effects of this bad infection, they’re having a hard time getting them in, or finding places to draw blood from for needed blood tests. Yesterday, he was poked over 10 times in 12 hours.

My poor little munchkin is sore and sad and sick. He has to have splints on his hand and arm to keep his IV’s from being pulled out, so playing with toys is frustrating.

The good news is that pulling out the line and treating with antifungals is helping. He hasn’t had a fever since last night! And this morning, for the first time in days, he is resting well enough that I was able to put him down. Hence, I found time to write this blog.

I apologize for the lack of pictures so far. When I get a minute, I’ve got some adorable stuff from our hospital stay a couple of weeks ago. This stay so far Patrick hasn’t felt well enough for us to do something as frivolous as picture taking… but now that he’s on the mend, I’ll be doing that soon.

As for mom and dad, well.. we’re pretty darn exhausted. It’s been nearly impossible to get a good night’s sleep.. or even to get a nap in. On top of that, we’re worried. We still have bad memories and plenty of heartache from our last experience with yeast infections. It’s scary to be facing one again… And it is the hardest thing in the world to watch your child suffer and not be able to take the pain away.

Still, all we can do is live each day as its given to us. It is more than a miracle that Patrick is still with us. He fought so hard to be here and is fighting still. We are doing all we can to make sure that he gets the best out of each moment he’s here.

We’ll keep you posted as we know more. For now, it’s just a matter of waiting for the medicine to do it’s job and then keeping these two infections from coming back.

Worth the wait

Last week was one of the harder hospital stays we’ve had, and I think it’s because there was so much waiting for answers to scary questions… and while we waiting Patrick didn’t feel all that sick and couldn’t figure out why his boundaries were suddenly so much smaller. Had he not discovered opening and closing cabinet doors as a way to spend his time, I think I’d have been a goner.

After 3 days, the lab tests showed that the infection was, in fact, the same infection Patrick had back in January. This type of bacteria can sometimes live in the plastic of a central line. The doctors theorize that the reason Patrick only sometimes had low fevers and only sometimes acted sick was that the infection was living in the line and only sometimes making its way into his bloodstream.

The best way to make sure Patrick got better was to take out his central line. So – Thursday afternoon they took Patrick to do an ultrasound of his veins to see where a new line could be placed. Friday morning they explained a plan to me that involved removing his broviac line and putting in a temporary PICC line instead. (Please see previous blogs for descriptions of the differences between these lines). After 3 days, they’d take out the PICC line and put in a new broviac line instead.

I explained again that we’d been told that Patrick couldn’t have PICC lines because of the collateral vessels in his shoulders. But – it was better to try than to plan for peripheral IV’s in his hands and feet for 3 days.. So we went ahead.

Both the broviac removal and the PICC placement are sedated procedures and it took some talking to convince them that they could be done at the same time – but, despite a full-to-overflowing hospital, they made it happen.

We got ready by putting an IV in his hand where contrast could be injected and an NG tube down his nose to drain his stomach and make sure he didn’t vomit and aspirate again. This took over an hour to do. Patrick has learned to block tubes with his tongue as they try to pass them down his throat. It took several tries and a very crafty charge nurse to finally get it all done. With music therapy there to try to help calm him down, the room seemed a bit like chaos. In the end, Patrick was exhausted and furious. I took this picture as I tried to calm him down right before he fell asleep from total exhaustion.

Late afternoon on Friday, they took Patrick to Special Procedures where they use a technique called fluoroscope to view the blood vessels to view the blood vessels as they work.

The anesthesiologist gave Patrick a dose of Versed and let me hold him as it put him to sleep. This was a first for me, and interesting to see his reaction. First he got all giggly. They he took my face in both hands and gave me a big sloppy kiss on the mouth. They he went kind of limp and I put him on the procedure table and left as he was drifting off to sleep.

Less than an hour later, they called. They explained that he did indeed have collateral vessels that made a PICC line impossible. However, they’d put in a deep peripheral IV that would better survive the 3 day wait.

Picking Patrick up, I learned that Versed does two things to Patrick. It makes him loud, and it makes him fearless. He spent the entire ride to his room and then at least an hour afterwards yelling “Hi!” at the top of his lungs to every person who passed by.. including the ones all the way out in the hall where they couldn’t see him. He also took to jumping and climbing and bonking his head into things. (He still has a bruise between his eyes from this game).

Soon he got tired and went to sleep. And we went back to waiting. Surgery requires a 3 day wait before they can put in a new broviac line whenever one is pulled for infection. In the meantime, the sugar in Patrick’s TPN had to be reduced to prevent damage to the peripheral vein. This meant he didn’t feel quite as well. He also kept the IV in his hand because we don’t dare take out any working IV, for fear we won’t get one later when he needs it.

Patrick didn’t want to slow down, though. Within a day he’d figured out how to still crawl with a splint on his hand.. he was determined to stand at the side of his crib.. and he taught himself to sit up to make sure that no one else would be able to get away with trapping him by laying him down. It was an exhausting 3 days because he was extra motivated to stay active, despite his new restraints.

Finally, Monday rolled around and Patrick was eligible for surgery again. We waited all day, and finally Patrick’s doctor told the nurse to call and see what was taking so long. We found that his name had been accidentally left off the schedule. They added him at 4 and around 6:30 took him down to surgery.

While we waited for the anesthesiologist to come, Patrick was his usual bundle of energy. He discovered a pretty big blue button on the wall that he pushed. He was thrilled by the alarm that sounded and how quickly people made it to the room. Yes, he found and pushed the “Code Blue” button that is used to call emergency help when a patient stops breathing or worse. I caught on and cancelled the alarm as the anesthesiologist got to the room. He only got to the button once more as we talked, which just got a big grin from the doctor.

The pre-surgery talk with this doctor scared me. He explained that there were big risks in intubating when Patrick had RSV. He also explained that the surgery might take a long time, as they didn’t know for sure how hard it would be to get a line.

Again, they gave Patrick a dose of Versed and I kissed him as he drifted off then went to the waiting room – a nervous wreck. Howie joined me about 15 minutes later, and after another 15 minutes the surgeon appeared and explained that they’d easily gotten a line in.

When I got to the recovery room, Patrick was trying his best to sit up while everyone else tried to keep him laying down. An hour later, though, in the room, he was up and full of energy. Again, he was fearless. His nurse kept calling him “wild” as he would quickly try to escape guarding hands to stand and jump, etc. Fortunately, by 10 he wore himself out completely and other than being woken by vitals, slept through the night.

Tuesday morning, we were finally able to go home. We arrived home almost exactly 7 days after we were admitted to the hospital.

When you’re confined in a little hospital room, you don’t necessarily notice all the learning your child has done. Patrick is now able to sit himself up and just needs a little more practice to master crawling on hands and knees. He’s playing peek-a-boo and other interactive games. He is a HANDFUL and it seems as though it came overnight.

He was so happy to be home with space, though, and so was I! It’s so much easier to contain a tornado if it has a little bit of space to bounce around in. We’ve had to adapt some, though, to adjust to his new skills. It’s no longer safe to use the changing table.

Patrick did manage to break his line his first morning home, so we spent yesterday morning up at the hospital getting it repaired. (Big thanks are owed to the GI staff who managed this in their clinic and saved us a trip to a very overworked ER). Between that adventure and his daily appointments this week, I was quickly reminded that, even at home, keeping up with Patrick and his needs is plenty of work.

We did see his pediatrician yesterday and she was all grins as she handed me a growth chart that showed Patrick’s weight in the 5th percentile! He’s always been well under the lines on the growth chart. We’ve never even talked percentiles.

I don’t know how we’ve been so blessed that, even with infections, he’s been really very healthy for so long. But we are grateful as we take each day at a time. Some days are harder than others, but at least this week, the outcome is worth the wait.

The waiting game

It’s 10 minutes past midnight and I’m sitting up waiting for Patrick to fall asleep again after being woken for vitals just moments after finally drifting off to sleep. This was the 4th nurse we’ve had in 12 hours.. That’s right, a new nurse for every set of vitals. And it’s making me homesick.

Patrick hasn’t been himself all weekend. He had low-grade fevers and was more irritable than normal. Finally, yesterday morning I gave in and called to request blood cultures. I was guessing that he had an ear infection or some other ordinary childhood illness.. But as it turns out, he’s got another infection. Yesterday’s cultures grew a bacteria that so far is relatively similar to the one that caused his infection a month ago.

And so now we’re playing the waiting game. We won’t know until sometime tomorrow (or is it today?) whether or not the bacteria is the same. If it is, the question becomes why didn’t it go away before and what can be done now to get rid of it. In the meantime, they’re giving IV antibiotics that I’m hoping will help him feel better soon.

He’s really not acting all that sick. This is good news as it means that we can probably treat the infection more easily. It does mean he’s a little more stir crazy because he wants to be crawling and exploring like he can at home. A crib and a playmat are just don’t seem like enough surface area to him.

That it’s RSV season makes this a unique hospital stay. Because the Infant Unit is full with babies sick with RSV. We’re tucked away in a corner of the Children’s Surgical Unit. It’s quiet here… much more peaceful than the Infant Unit in respiratory season. We’re getting to know a whole new set of nurses which can be disorienting.. especially since they rarely get babies here. But Patrick easily wraps any nurse around his little finger, so we’ll have friends here soon, I’m sure.

I’m hoping that the day will bring enough information that we’ll be able to end the waiting period and move on to a treatment plan. When I know more, I’ll try to put it here on the blog.

On a different note – any of you out there reading this post who haven’t done so already – please visit the “Activities and Events” page. Click on “Five for February” and send the message on that page to 5 people who you think would donate or forward the message or both. We have been stuck just under the $5000 mark for some time now. We only need 8 people to give $5 and we’ll cross that threshhold.

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.

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

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.

What 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.

The 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.

The 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.

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.