Not again!

Here’s the ultimate test of the value of the switch to wordpress. I am trying a quick blog to update everyone everywhere about what’s going on.

Taken a couple of weeks ago, during our last admission. He’s watching the construction going on outside the window.

So, quick version.. About 3 weeks ago Patrick had a really bad few days. His stomach was upset. He had a hard time concentrating. He was in a BAD mood and into everything. It went on long enough that even though his labwork didn’t show any signs of trouble, I requested a set of blood cultures and skipped a nap to drive all the way to the hospital to get them done.

And then, that night, as I was getting Patrick ready for bed, I checked his temperature and discovered he had a fever. We called his doctor and came up to the hospital.

We were here 6 days, our longest stay in over a year, because it took forever to get the infection to respond to the treatment. (For various reasons I may or may not expound on later.) And because it took an extra long time to get the right antibiotic dose. It was a frustrating stay because he never got horribly sick, but he had staph epi in his line and it’s notoriously hard to clear. And the longer it took to clear, the more the doctors wanted to try a different approach (understandably.)

And, well, because the night shift just couldn’t manage to help him sleep through the night. But that’s a gripe for another day.

I’m afraid I jinxed us. One of the dramatic changes the doctors wanted to do to be sure to clear the infection was to switch from using ethanol to using vancomycin, a targeted antibiotic, to protect the line.

I raised more than a little bit of a stink. I insisted that we still use ethanol at least 4 hours a day. I made the attending come discuss it with me. And I won.

But i felt guilty. And when we went home, I did my best to follow doctors orders and put a heavy preference on vanco locks over ethanol.

Fastforward to today. For the 2 weeks since bringing Patrick home, I’ve been giving antibiotics every 8 hours.. including a dose at midnight. Tonight was supposed to be our last night.

Patrick’s cousins are in town and we’ve been having a grand family party. Aquarium trip. Hiking in the mountains. And today they rented a bounce house.

Patrick and I were very excited about today. Only one matter of business to take care of. A visit to his physical therapist. We have been waiting for MONTHS for a new DAFO (brace) for his foot to help with his worsening muscle tightness. And, Patrick has been dying to show his therapist how he’s learned to ride a tricycle.

Well – we got to the therapy office. And we got in the elevator. And Patrick’s breathing got a little shallow. And he gave a little shiver. And a hundred memories rushed back into my mind and I knew something was wrong. I remembered what a bad and out of sorts day he had yesterday, how his tummy was upset, how he had a hard time concentrating and kept getting into trouble.

So the elevator doors opened and I didn’t get off. Pushed the down button and went straight to the family clinic on the first floor. And I asked for a thermometer.

A nurse came out and checked and at first his temp was normal, but she rechecked and got 99.0. In his low ear.

So, we hopped in the elevator and went back upstairs to cancel our appointment.

Patrick was distraught. He didn’t want to be sick. He wanted to see Miss Holly.

Well, Miss Holly came out and I explained what was happening and she explained that the brace company had rejected the cast we’d sent as a model for his foot and asked her to recast. If we missed this appointment, it would be another month without a brace.

So – we made a deal. I’d call the hospital, she’d cast his foot to get a mold for the brace. Patrick would, well, try to cry more quietly.

By the time we left the therapy office, Patrick was sold on going to the hospital. So, we hurried home. Checked a temp. 101.8 this time. 15 minutes later. I grabbed the transplant go bag because I didn’t want to waste time packing, gave him some tylenol, and we booked it up to the ER.

The tylenol worked. Mostly. His fever was the same when we arrived.

And so, here we are. We are antibiotics to cover all the major bacteria, and an antifungal. I threw a bit of a momma bear tantrum when they tried to tell me they didn’t think we needed the antibiotic that kills his recurring kleibsiella bacteria.

He doesn’t feel well. He is tired. He only napped for 10 minutes. We have tried going for walks and in the end, he just prefers to lay in the bed.

And so, here we are. Hoping culture results are fast and clear. Hoping we are giving him the right drugs. Wondering how we’re going to make tomorrow bearable.

Just like every summer.

Mid-July rolls around and I start to get nervous. And I hate that we are here because I don’t want to be superstitious about certain months. But for some reason, summers are always hard for Patrick.

And so, I’m quite discouraged tonight. I am sad to be missing out on my first-of-the season tomatoes that I harvested this week and the green beans on my plants waiting for harvest and the great big yummy yellow zucchini sitting in the fridge. I hate that Patrick and I had finally hit our stride again, finally had a routine again, finally were catching up on the chores again. (Does anyone want to iron a month’s worth of dress shirts?)… And now we are starting over all over again.

But at least it is 10:30 and I can go to sleep because tonight giving the antibiotics on time is someone else’s responsibility.

The never list

Some people keep a bucket list of things they want to do. I have the opposite.. A never list. Things I hope never to experience.

Monday following Thanksgiving, we woke up to Patrick making the weirdest whining noise. Brian got up to check and at first couldn’t find anything wrong. But Patrick just kept whining, so Brian got a flashlight and went hunting. Then he spotted the problem – blood! Patrick had picked off his central line dressing at some point during the night and at one point or another had snagged the line and broken it. He was soaked in TPN from the side that was running and bleeding from the broken line on the other side.

I’d prefer never to have my son break a line at 2:30 a.m. I hate to imagine what would have happened had he slept through it!

At least, though, I’d just been in his room 15 minutes before and knew the line had been ok then.

It broke at a previous repair and both lumens were damaged, so we knew we needed to get the line repaired ASAP to avoid infection, hypoglycemia, or other problems.

I clamped off and cleaned the end of the line and covered it with a sterile dressing. Then, we got dressed, packed, and loaded into the car.

Brian drove because it was snowing.. actually, by that point it had been snowing for almost 24 hours without stopping. The roads were ice and snow.. the worst driving day of the year so far. The plows couldn’t stay ahead of it. And we were headed up to the hospital on the hill. I often wonder who had the brilliant idea to put two of the region’s premier hospitals up in the foothills of the Rockies.

I have dreaded the idea of having to get to the hospital in an emergency in the snow. Never would have been enough on that one, too.

But, taking surface streets in our 4 wheel drive jeep, we made it there and in plenty of time.

We’d called ahead, so they had a room waiting for us… but as it was a the middle of the night on a holiday weekend… we knew that things could still be slow.

We just didn’t know how much that would affect us.

They’d called ahead for a repair kit for Patrick’s line when we called to say we were on our way. However, lines don’t usually break in the middle of the night when children are supposed to be still and sleeping. So the night staff wasn’t sure where to look. They just knew they couldn’t find one in the usual place.

They said wait for materials to get in at 6 a.m. So we waited. Patrick’s blood sugar was holding OK and we were sleepy so we put on some Elmo and went to sleep.

At 6, they still couldn’t find anything. The computers said there were 4 in stock. But they couldn’t find them. They said, “We’ll keep looking.”

By 9, materials confirmed that they didn’t have a repair kit in stock. This is definitely a scenario I NEVER wanted to encounter! If a line isn’t repaired immediately a lot of things can go wrong. Blood can clot in the remaining portion of the line. Bacteria can get in through the exposed open end. Basically, we could lose the line if we waited to long.

And that’s not considering the effects for Patrick of going without TPN. The best case scenario would require staying in the hospital with maintenance fluid running through a peripheral IV.

This is when I started getting creative. Remember last summer when Patrick broke his line 3 times in 3 days? And I had to repair the line in the middle of Idaho? Well, I didn’t want to go all the way to Yellowstone without the means to repair the line if it broke again. So I started saving the unused pieces of repair kits. Every kit has 3 different repair tubes for different types of breaks, so I kept all the unused pieces still in their sterile packaging.

And, wanting to be prepared for emergencies, I never threw them away.

So, since the hospital didn’t have anything to fix the line with, we sent poor Brian back out in the storm to get my makeshift repair kit.

Finally, around 10:30 a.m., he returned with the necessary supplies and IV team came and did the repair. By then, Patrick had been without TPN long enough that he was thirsty and tired and his blood sugar was starting to fall. So, we asked for a peripheral IV to be placed so they could give him some fluids and sugars while we waited for the glue to dry.
We watched some more Elmo, played with blocks and cars, and slept as much as we could. Patrick was tired enough that he agreed to cuddle up and sleep next to me in a big bed.. which I was grateful for, as I was exhausted, too.

At 2:45 p.m., the glue was finally dry enough to restart the TPN and we were discharged 12 hours after the adventure started.

Amazingly, the line worked and he so far is infection free. This is even more amazing, since 2 days later his tubing came unscrewed and I woke yet again to find him sleeping in a puddle of blood. Brian was away on business that day… (Another time never would have been enough. It took 96 oz. of hydrogen peroxide to get the stains out of his clothes and sheets. And yet, his blood count that evening was completely normal.)

The only thing wrong really since our adventure has been some really bad stomach upset again, the kind he usually only gets when he has bad bacterial overgrowth, a virus, or an infection. We’re treating for the bacteria and watching for the others. So far, two lab tests have confirmed his white counts are normal, a sign that there is no infection or illness in his body… So we are just hoping that the antibiotics help his gut get back to “normal” soon.

I know we’ve been really spoiled lately with good health. But I’d still prefer not to whiddle down my “never” list any more in the near future, as far as Patrick’s health is concerned at least.

All too familiar

Here we are again. Back at Primary Children’s hospital – battling yeast yet again.

Sunday morning, Patrick developed a fever. It started low, but after a couple of hours, it was evident that he didn’t feel well. It seemed to both Brian and myself that he was trying to communicate with us that he wasn’t feeling well and needed help.

We’d made it through 2 hours of church, but decided it best to leave before Sacrament meeting was over. We got home, took his temperature – 101.4 – and he was starting to have chills. So we packed up and headed to the E.R. as quickly as possible.

Once we arrived, things were pretty much the usual drill.. they gave him some Motrin, took his history, drew blood cultures and started antibiotics and antifungals.

It didn’t take long for us to get into a room. But we started out right away with excitement. Before the nurse had even finished her initial assessment, Brian noticed hives forming next to Patrick’s ears. Within 5 minutes he was covered with hives from head to toe and his lips and eyes were starting to swell. They turned off the antifungal medicine and the reaction stopped and started to reverse. We think that they ran that medicine faster than his body’s used to and it caused the reaction, but it was a very scary moment to think that our preferred antifungal medication might suddenly have become off limits.

That night, Patrick was really, really sick. His fever reached over 104 degrees and he was sick to his stomach. We barely slept at all. The only rest he got was if he had both Tylenol and Motrin in his system. The problems continued through the next day and the antibiotics and antifungals didn’t seem to be making much difference until afternoon when his fever finally broke for the first time.. But his blood cultures stayed negative all day.

Around 8 p.m. a doctor came to visit us, though, and gave us results. Patrick has yeast in his bloodstream again.

The rest isn’t unexpected, but that doesn’t make it easier. Today’s been scary, stressful, and exhausting. Especially since Patrick is not cooperating with me about sleeping in his bed and neither one of us has had a good night’s sleep since we got here.

We talked to the doctors early and they confirmed that we needed to pull out his line. They also explained that Patrick’s spleen, yet again, is sequestering platelets and his blood counts are falling to dangerous levels. This means transfusions again with all the potential complications that come with that.

We spent the morning getting a little more settled in. Social work and child life came to visit. Child life talked about ways that we can help Patrick to be less afraid while he’s here. They brought him a baby doll with a little oxygen mask and blood pressure cuff to show him that they’re ok. He gave the doll lots of kisses and snuggles.. But took the blood pressure cuff off.. I think he was protecting it. They came along to all the following tests and surgery, too, to help minimize the trauma of these procedures. This was a new experience, but he seemed to enjoy it.

We went down to ultrasound around noon. They were looking for fungal balls in his organs. The poor radiology tech and radiologist were very confused trying to understand the anatomy they were seeing. I tried to explain that his gut looks funny and that his gall bladder is so small it’s almost invisible.. but they still were pretty sure his small intestine was his gall bladder. As we were leaving, the technician said “He looks so healthy, though”.. implying that on the insides he looks far from healthy.

When we got back from ultrasound Brian was waiting for us. He’d been given the afternoon off of work to come help. I was so grateful he was here!

We hurried and got ready for surgery. Just as we were about ready, the resident from the infectious disease team came to examine Patrick and take a history. Surgery showed up to take us down before he’d finished his exam. Patrick was jumping on the bed. I said to Brian “He’s just jumping because he knows he’s about to loose his foot”, referring to the fact that he’d come back from surgery with an IV in at least one foot. The guy from surgery looked up and said “Wait. What? Do I have the wrong kid?” We had a good laugh after that.

We went down to surgery with the child life specialist and infectious disease doctor in tow. After talking to the anesthesiologist, we sent Patrick on his way in a crib full of toys. Then we sat down to finish the history with infectious disease. Before we finished, Patrick’s surgeon came in.

Dr. Rollins, the surgeon, talked to us about what a dangerous situation we are in as Patrick is running out of more and more places to put lines. We’re aware of this, but hearing it vocalized by our surgeon made it all the more real.

Worse yet, he called from the OR as they were trying to place peripheral IV’s to tell us that they couldn’t get them in and to ask my permission to put in a “shallow central” line in his leg or neck. Apparently, they’d stuck him 8 times attempting to place a peripheral IV.

In the end, though, they got 2 peripheral IV’s in. Infectious disease didn’t like the idea of using a central line at all and asked them not to leave one in. So we find ourselves in a scary position now. Patrick needs IV’s for his nutrition and medication. He also needs to have labwork drawn to keep a close eye on his fragile health.. and we don’t know where else they can get needles in.

After talking to the surgeon, they let me go back to the recovery room where I found Patrick just by following his screams. He was hysterical and they told me that the anesthesiologist had prescribed me as his pain medicine. So I sat and rocked him and eventually got from screams to whimpers to sleeping.. But that was the situation for the next 5 hours or so. Patrick screamed bloody murder whenever anyone but me or Brian touched him. He was only content being held and rocked by one of us.

He just woke up about half an hour ago, though.. and for once seems back to himself. They gave him medicine for nausea and started his last transfusion of the day and it seems to have him finally feeling better. The best news is that he doesn’t have a fever.

Right now, he and his daddy and playing with toys in his crib. He’s not 100%, but doing ok for now.

Prayers for IV’s to last, for veins to be found when needed, and for Patrick to feel comfort in a very scary situation would be appreciated.

The attending from infectious disease explained that they don’t think this is the result of an untreated infection. The previous infection didn’t grow back. Instead they think these infections are coming from his gut.. and we don’t know how to stop that for now.

A lot is still up in the air. I’ll post more as I know it.

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.

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.

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.


We’ve been a very busy little family lately. Patrick is 5 months old now. And in the time since I last posted, we’ve had a lot of firsts. So, here are some highlights.

First giggles
Patrick learned to laugh a while ago, but we didn’t get out and out chuckles until we discovered that the kid who used to scream his head off whenever he got undressed is ticklish and loves to have his clothes off. Dressing and especially weighing are now favorite games… but it’s best when daddy just picks him up without clothes on and tickles his back.

Today we learned that you can also get belly laughs if you squish his cheeks.

First fever
Well, it all started with a cold, that turned into croup. After a week and a half trying to fight it off, Patrick got his first fever. Fortunately, it didn’t go much higher than 100.4 (38 degrees Celsius) and so we were able to have blood cultures drawn at home and his fever was gone in a day. No infection, thankfully. Just a day at home with Mom holding Patrick and taking his temperature every half an hour to make sure it hadn’t hit the danger mark yet.

First necktie
My brother Steven got married at the end of March. Although we were crazy busy working on his wedding cake and pictures, I just couldn’t help taking the opportunity to make Patrick and Brian matching neckties. We bought a tie with a matching handkerchief. Patrick thought his tie was a great toy to hold and chew on.

Oh, and a disclaimer on this picture. Patrick hates bright lights of any kind and we had studio lights on. Someday we’ll get a family picture with him not crying.

First rollover
I set Patrick down and turned my back on him for just a minute. When I turned back, he was on his tummy looking up at me as if to say “Whoa, Mom! What do I do now?” So far no signs of him having any idea how he did this or how to do it again. But we’re having much more play time on the floor to encourage him.

First haircut
After weeks of trying, we finally got time to take Patrick to my Grandpa’s house for his first haircut. In my defense (for those of you who thought I should never cut it), his hair was in his eyes and under his chin. Patrick was ok with the whole haircut idea till we hit the ticklish spot behind his ears. Finally, though, he fell asleep and we were able to finish. It’s a nice short cut.. but we hope that means it can grow for a while again before it needs another cut.

First ER visit
Last Saturday night, I noticed some bleeding under the dressing for Patrick’s central line. The line had shifted and, on closer inspection, we found that it had been pulled. It didn’t pull out, but was far enough to worry us. So – we got to make our first trip to the ER.

We were probably quite the sight there because, unlike the other families, we weren’t panicked. Central line issues are just part of life with Patrick. We’ve been planning and practicing for this trip for a while.

We arrived at 10:30 p.m. and had a bit of a wait in the waiting room because we were definitely not the most urgent case there. They took some x-rays to see the position of the line and about 1 a.m. the surgeon who placed Patrick’s line came into the room. He had been called in for an emergency appendectomy, and stopped in to see Patrick while he was there. He looked at it and said that the line was in a good position and he didn’t think it needed to be replaced on an emergency basis. Instead, we were to put antibacterial ointment on it twice a day to prevent infection, which meant lots of dressing changes, and then get a second opinion on Monday.

We were amazed, but happy, and after teaching an E.R. nurse proper technique for dressing change (yes, us teaching her), we were sent home. We got home at 3:30 a.m., connected Patrick’s feeding tube, and slept in till 11:30 a.m.

First outpatient surgery
So that brings us to Monday. About a month and a half ago we started the battle of the granulation tissue. Patrick had a patch of it next to his stoma that just kept growing back, no matter what we did. We learned to use silver nitrate to treat it, but it just kept coming back. So – we decided that maybe it was doing no harm and we’d leave it as it was.

No sooner had we made that decision than I discovered that his g-tube was surrounded by granulation tissue. A visit with the nurse practitioner in the GI clinic taught me better technique for nitrate treatments and after 10 miserable days of treatments, his G-tube site was clear of it. However, the spot by his stoma was starting to make it hard to keep a bag on and his skin was getting sorer by the day. I tried my newly practiced skills, but the tissue just kept coming back

So, we called and scheduled an appointment to have it electrocauterized. This is a minor procedure, but it’s painful and so they put babies to under so they don’t have to suffer through it. The surgeon we saw in the E.R. told us to as for follow-up at our appointment on Monday. It was still looking sore and red and swollen and the surgeon didn’t like the look of it, so he decided it was best to change the central line.

This means that they took it out of one vein and put it into another one, coming out in a different place on his chest. Again, this is something we’d been warned about, so it wasn’t a complete shock. However, we were a bit nervous and, after an already long weekend, quite tired.

The surgery went well. Patrick woke up and was able to come off the ventilator in no time at all. He was, as always, a favorite with the nurses in post-op. Brian got to reconnect his TPN in post-op, which was kind of funny to do. Our nurse was fascinated with the different equipment. We got some curious looks as Brian drew up vitamins with syringes and injected them into the IV bags.

It’s a curious thing to be the old pro parents in the hospital. I often refer to myself as a “hospital mom”. We know the routine. We’re patient with the nurses, doctors, and other staff and, although we are concerned for Patrick, we are not scared or intimidated by our surroundings as we once used to be. It’s kind of odd to feel perfectly at home in a hospital… But makes all of this more bearable.

Patrick was sore and tired for a day and still whimpers if we move his not-quite-healed shoulder the wrong way… But overall he’s back to himself. As for Howie and myself, well, we’re slowly but surely catching up on our sleep and getting back to a normal routine. And preparing for the adventures ahead.

First steps to transplant
And that brings us to the last of the firsts for this entry. We have made the first steps towards transplant evaluation for Patrick. We have appointments for April 27th and 28th at Seattle Children’s Hospital to meet with the surgeon, gastrointerologist and just about anyone else who might have anything at all to do with Patrick’s transplant. Theevalution process is big, long, and very detailed. They want to make sure that Patrick needs and will benefit from a transplant, that he’s healthy enough to have one, and that his home life lends itself to as successful of a recovery as possible. This trip is the first step in that process, and we are excited to go and learn and start building relationships there.

Patrick still has a long way to grow. He’s almost halfway to the 10 kilo weight goal. (He weighs 10 lbs 11 oz.), and so we know this visit won’t end with him on a list. But it’s a start and a step in the right direction.

And so, those are the firsts we have to report for the time being. We’re looking forward to continuing to see him learn and grow. He is so good at using his hands now! And has just started to discover that he has feet. His spirit grows by leaps and bounds every day. Most of all, he amazes us with his incredible patience and optimism.

3 months old

Patrick is 3 months old now and is starting to look and act much more like a little boy than just a baby. Oh sure he still wakes us up at night. And I can still tuck him under my arm and carry him around like he weighs nothing (of course, he’s still very small). But he’s growing (8 lbs 13 oz) reaching that fun stage my family calls “interactive baby”.

First of all, he’s started to give out smiles all the more willingly. I can bet on the fact that I’ll get a big grin whenever he wakes up and realizes I’m holding him. This past week, he’s also started to react more when I play with him. He’ll laugh and talk when I sing him songs or talk to him, and I can get him outright chuckling if I pretend to eat his cheek or tummy. He also is starting to take an interest in peek-a-boo. Of course, this is all the more incentive for me to sit and do nothing for hours besides just trying to get smiles from Patrick.

He’s taken a new interest in his toys. He loves to sit in the bumbo seat that Howie’s co-workers gave him. He’s actually learning to hold things so his gym, rattle, rings, etc. are suddenly much more interesting.

Course, he’s also learned to hold onto his central line… which is a bit more of a problem. Don’t need him grabbing that and giving it a yank. Thankfully, my mother in law modified a bunch of onesies to a design I came up with that send the line out the side instead of being right in Patrick’s reach and those are helping.He’s sleeping through more of the night and spending more of his days awake. Part of this may be that he’s finally feeling better. (His anemia is resolving himself and we are starting to get a hold on keeping him hydrated again). But I think part is just that he’s growing up.

Daddy went on his first business trip since Patrick came home this week. Thanks to all the friends and family who were there to watch over us, we made it through just fine. And now that Howie’s home, Patrick is just eating up the daddy time.

Perhaps the best news is that it was all pretty good news when we went to see Patrick’s gastroenterologist this week. If you don’t know, the past couple of weeks have been a bit scary as we almost had to take Patrick to the ER a couple of times. First, we suspected he might be developing a fever. Second, out of nowhere his stool output went through the roof and he walked a line with dehydration that we had to watch VERY closely. (Patrick doesn’t have the portion of intestine that reabsorbs fluids, so diarrhea will dehydrate him much faster than other children).

As so often has happened for us, though, the Lord was watching over Patrick. The right doctors were on call at the right times and they were able to teach us how to take care of things at home rather than taking Patrick into the ER. We had blood cultures drawn by his home nurse. He was put on an oral antibiotic to help fight any bacterial overgrowth that might be there. (With so little intestine, Patrick’s body can’t get rid of the “beneficial bacteria” that live there the way the rest of us can and he can get infections in his intestines that could cause diarrhea or worse.) He had his 2 month (yes, I know it was late) checkup with his pediatrician on just the right day so they could do labs to check for other stomach bugs.

And, in the end, the great news is that there is no sign of anything malicious that’s causing the change in output. We monitored him closely and gave IV replacement fluids at home so he wouldn’t get dehydrated. He got pedialyte instead of formula, and then watered down formula for about a week and a half. This week we were finally able to start giving him full strength formula in very small amounts (about a third of what he was getting, before… he’s up to a teaspoon now). And so far, so good. In fact, we’re on the other side of things right now where he’s not losing enough fluids… a sign that we need to increase his feeds. (We want him to need some replacement fluids because that’s where he gets his electrolytes).

So – if our emergency watch level were on the same scale as homeland security, we’ve backed down from red (severe) to blue (guarded). I’m getting to spend more time being mommy and less time being nurse.

I’m so grateful that Heavenly Father answers prayers. And I’m grateful for priesthood power in our home. Brian is an elder in our church and was able to give Patrick a blessing of healing this week. And really, the fact that Patrick is still home with us, and feeling happy and healthy, is nothing short of miraculous.
Speaking of miraculous, (as this blog post reaches an eternity in length), just a reminder that Patrick will be sealed to us in the Jordan River LDS Temple on February 13th and we’ll be having an open house to welcome him into the family that same day. Any of you who are in the area and would like to celebrate with us are invited. For those who are out of town, we’ll try to be quick in posting pictures, thoughts, and memories so you can share in the day with us.