Tag: IV’s

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.

What we do when we’re not in the hospital

I’m almost afraid I’ll jinx us by writing this post. Patrick finished his course of antibiotics and antifungals a week ago. So far, so good. We’ve been settling into life at home in this break that the super anti-infection medications have given us.

Patrick seems to be on a mission to make up for all of the time and opportunity his illness have caused him. So, I’m doing all I can to support him and help him to be successful in doing this. Last fall, he couldn’t roll over. Now he’s crawling, climbing stairs, and cruising along furniture. Because he’s in such a focused, productive period of development right now, we’ve called in the troops to help him to accomplish his goals.

He’s got 5 therapists right now, making for a total of about 10 therapy visits a month. We’re working on speech, motor skills, feeding, and more. It seems that every time we meet with one of these experts, Patrick learns some new and amazing skill from the visit. After a little bit of reinforcement at home, he’s doing things that had previously seemed impossible, or at least a long, long way off.

Of course, a more active, mobile, and as one physical therapist describes him “impulsive” Patrick requires much more supervision. He breaks a little connector piece in his IV tubing a minimum of 3 times a week. And a backpack on wheels is not capable of following him up the stairs. We have many more bumps and bruises than we used to have. Patrick’s a big braver sometimes than his skills can allow for and I don’t think it would be a normal day without him falling and bonking his head on something. But, as tired as I am from chasing all the time, I wouldn’t have it any other way.

Last week we made a change in his IV therapy. Once a day now, he gets a one hour “break” from his TPN. No tubes. No pumps. I just disconnect him, put up the baby gates, and let him go. He plays and plays and then we reconnect the IV’s and the combination of activity and change in blood sugar knock him out completely. The only problem with this plan is that he’s taken to napping as late as 7 p.m.

Being at home with an easier medication regimen (just 2 oral meds and two nutritional supplements given morning and night) has actually given us time to do other things like cooking or playing and working in the yard or  taking care of the amazing friends who’ve taken such good care of us. I’ve had time to really dive into plans for the upcoming benefit concert (which sound more and more amazing by the day!) One of these days, I’ll even catch up on the ironing. (This is a little bit thwarted by the fact that Patrick really likes to stand holding onto the ironing board.)

It’s so nice to go to bed at the end of the day exhausted from a day of work around the house and playing with my little boy. It’s been a treat to be at home with my family and friends nearby. Things are good right now and we feel very, very blessed. It can’t be this way forever. Until Patrick’s transplant, there will always be another hospitalization around the corner. But we are grateful for this little moment of peace.

Results of today’s tests and surgery

Today’s been a pretty busy day. Patrick went at 9:30 to have an upper GI study today. They put a contrast solution into his stomach through his G-tube and then watched it move through his intestines. He’s had this test done a couple of times and the results are always quite interesting to see. As we knew, Patrick’s small intestine was quite fat and stretched out and his large intestine was pretty narrow, though not as narrow as I remember it being last September.

At the end of the study, the radiologist compared today’s images to the ones taken in September. Her result: “No significant change”. Yup, that’s right folks.. all that worry revealed that they officially discovered that Patrick’s anatomy is just as we expected it would be 6 months after his reconnection.

They are still wondering if this odd anatomy is to blame for some of the recent infections. (Bacteria or yeast from the gut leaking into the bloodstream through thin walls).. but are going to watch for a while to see rather than taking immediate action.

So – this afternoon Patrick had a new central line placed. This one has two lumens, meaning there are two tubes so you can put incompatible things in at the same time without them mixing like antifungals and TPN. We’ll be starting a new therapy hopefully tomorrow, too, where we fill the unused lumen with a solution that helps kill bacteria and fungus.

We’re still waiting for a plan to move forward from here. For some reason, even though little has changed anatomically, they’re acting as though something major was still wrong and therefore trying to make changes to diet, etc. I’m having to go all out working as Patrick’s advocate right now.. fighting for people to think things through and decide what’s best for Patrick based on himself, not on general rules and practices.

It’s exhausting work, so since he’s sleeping, I think I will too. Hopefully it’s a calm, restful night and I’ll be ready to get up and start pushing for a discharge plan tomorrow.

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.

A trip to the zoo

We took Patrick and his cousins (and their parents, and grandpa) to the zoo yesterday. The last time we were at the zoo, Patrick was far more interested in the enclosures than in the animals themselves.

This time, however, he started to take notice that there was something different there to see. In fact, in the giraffe house, he tried all he could to get me to hold him close enough to touch the giraffes. (This could be especially dangerous because one of Patrick’s favorite games is to bonk his head into things he likes).

As is often the case with Patrick, this zoo trip was a little more complicated than your average outing. Patrick’s temperature was a bit high yesterday, so I carried a thermometer around in my pocket to check it regularly.. With the children’s hospital less than 10 minutes from the zoo, we figured we’d see all we could, and then run quickly if he got into the danger zone.

On top of that, while putting Patrick into his stroller, I managed to snap the tubing for his lipids in half. Thankfully, the lipids are just his “cheeseburger”.. needed fats and calories, but optional enough that we could wait till we got home to fix it.

Thankfully, the fever hasn’t evolved into worse and the lipids were restored without incident. I’m sure Brian’s brother thinks that we always have this kind of complications whenever we go anywhere. And, I’ll admit, it happens more often to us that I’d like. But as frustrating as it may sometimes be, it really is worth all the extra work it takes to do these family things when we can.

I am thrilled that Patrick was able to enjoy the zoo. And that he picked my favorite zoo animal to try to pet.

RSV and other adventures

This post is a follow-up on last week’s rant. It turns out that Patrick’s low-grade fevers were caused by RSV, a highly dangerous respiratory bug. He probably picked it up while he was trying to taste every piece of furniture in his hospital room the week before.

He was discharged to home before noon.. less than 24 hours after he was admitted. They sent us home with orders to visit the outpatient respiratory clinic as often as needed and boy have we been glad to have that resource! I think we caught this bug the first day… The symptoms didn’t really hit till Friday. Friday morning when he woke up he was working hard to breathe and my best efforts with steam and a bulb syringe wouldn’t budge things so I took him in. The respiratory therapist described the secretions as “glue”. He said that is was possible that Patrick was needing extra fluids, since I couldn’t give him drinks to keep him hydrated. So I stopped and asked for a prescription for some extra fluids.

The next night, he hardly slept! Finally at 3 a.m. I put the fluids on and he finally started to be able to clear his airway and went to sleep. When we took him in again his oxygen saturations weren’t in the dangerous zone, but they had dropped significantly.

That was the worst of it, though.. Patrick is actually doing much better these last couple of days. I think we finally have him rehydrated and he’s breathing much more easily now. We haven’t had to take him in for help in a couple of days now. I think that other than the long contagoius period and resulting quarantine, he’s on his way back to normal.

As for our car – well, it turned out to need $4000 in repairs. This is NOT what we wanted to hear in January, the month where we pay all of our out-of-pocket medical for the year.. We ended up approving the repairs, but have also decided that it’s time to sell that car and drive something more affordable to repair. And maybe once that car’s sold and our tax return comes back and things are a bit more stable, we can revisit the idea of having a practical car for me to drive in Seattle while leaving Brian with a practical car to drive here.

None of this excitement has done much to hinder Patrick, though. Despite being sick and grumpy and working to breathe, he is still growing up more and more every day. A week ago, I took a load of laundry downstairs. When I came upstairs I discovered Patrick halfway across the kitchen floor. He had dragged his IV pumps in their backpack by the tubing a good 4 feet trying to follow me downstairs. The next day we invented a safer way for him to get around.

Now when Patrick’s playing on the floor he wears a safety harness connected to a little cart that his backpack sits in. This way, he can get around the house without as high of a risk of ripping his central line out. He’s enjoying exploring how far he can go, and getting faster all the time! The funniest thing is how much he loves being under furniture. I’m amazed at all the places I find him. (And have to subsequently save him from.. because he gets his tubes and harness tied all around the furniture legs).

He also spent most of his last hospitalization improving his standing skills and he now dares stand himself up to some furniture and can walk around a big holding on… especially in his crib.

Bath Time

There are some little things that I took for granted before Patrick. One of them is baths.

With a Broviac line, there is a 2 x 3 sterile dressing on Patrick’s chest that must be kept dry in order to keep it clean. Until Patrick started to have PICC lines I just plain didn’t put him in water. When he needed a bath, I’d give him a sponge bath. When Patrick got his PICC it was easy to keep his dressing dry because I could wrap his arm in waterproof things and make him hold it out of the water. But now that he has his Broviac line, giving baths is taking some more heroic measures.

There are two products that make this possible. One is a medical invention called “Aquaguard”. It’s a piece of plastic with waterproof but easy to remove adhesive around the edges. You cover the dressing with this and it keeps it dry. The second I buy at the grocery store: Glad Press & Seal wrap. This wrap can go around the connections in Patrick’s line and also can be stuck over his dressing directly to his chest. It crinkles a bit when he moves, but it keeps him dry.

Waterproofing Patrick’s chest sometimes is a bit of a battle. He’s not a fan of having crinkly plastic stuck to him and often takes it off right after I put it on. But once he’s in the water, it’s well worth the work. He loves to splash and play.

I’m not brave enough yet to use the big bathtub for Patrick’s baths. It seems like a rather big thing to keep sterile and keeping the tubes above the waterline is hard enough in a baby bath. Besides, Patrick loves the baby bathtub I put him in. He uses his feet to push back and make waves that splash over the sides of the tub. (Therefore, I put the baby bath inside the big bathtub to contain the mess).

The only part of the bath Patrick isn’t a fan of is washing his hair. This isn’t any kid’s favorite part, but for Patrick it’s especially tricky. He has a lot of hair so it MUST be washed, but I have to do it while keeping water off of his chest. Even with the waterproofing, too much water can still soak through to the dressing. So we have to take extra time and do this with as little water as possible.

As the picture below demonstrates, sometimes a bath is needed when I just can’t pull off all of the logistics.

Patrick gets diaper rash very quickly because his stool is so acidic. The other night, he was crying miserably because his bottom hurt so badly! It hurt too much for me to clean it with wipes, and leaving it uncleaned was only going to burn more. So, I grabbed the nearest hospital bucket I could find, put two inches of water in it, and set Patrick inside.

 

I consider this one of my most ingenious feats of mothering yet. It got the right part of Patrick bathed and happy while keeping his line well away from the water.. And he thought it was hilarious to get to sit in the little bucket on the changing table.

Sometimes raising a child with short gut syndrome requires some real creativity.

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.

Lines

Patrick just got a new PICC line.

PICC stands for Peripherally Inserted Central Catheter. It’s “peripheral” because it is put in through his arm (or sometimes leg) but “central” because the line then runs up through that vein into his aorta (a.k.a. into his heart).

Central lines are very important. Because they run into the bloodstream closer to his heart, they are able to put things like TPN or medications into it that would damage a smaller vein because they are too thick.  Also, because they are in a main vein, they can draw blood from it to run tests rather than having to poke him every time he needs bloodwork. (Which for Patrick is sometimes done several times a week.)

Because Patrick needs TPN to survive, he needs to have a central line. Sometimes he has a PICC line in his arms. Other times he has a “Broviac” or “Cook” line in his chest.

Lines can be lost to infection, to damage, to clotting, or to accidents that dislodge them. But every line lost is dangerous for Patrick. One of the biggest factors if his survival is continuing to have veins to put lines into and so it’s not uncommon to find us discussing what semi-heroic measures to use to make a line last just a little bit longer.

This line placement went remarkably smoothly. The procedure took less than half an hour, following by a half hour nap. Now he’s awake and happily playing in his bed. Still a bit shaky from the anesthesia, but trying his best to sit up. He must be feeling ok.