Before Patrick turned 2, he went through a dozen central lines. However, we finally learned how to protect his line from infection by using ethanol locks and lines seem to finally be lasting long time. In August 2010, we replaced a line because it had become clotted. And the following March, wired over that because it was clotted, too. That was lucky line number 13.
And, 13 months after it was put in, we finally bid Patrick’s longest line a fond farewell this week.
It all started Thursday morning when we were getting Patrick ready for school. We were all dragging because none of us had slept well the night before. Patrick had had an especially hard night, but was excited for school.
Part of the morning routine is to sit down and withdraw Patrick’s ethanol lock from his line. (Technical reminder – Patrick has a double lumen, or two-tube, line. His TPN runs through one lumen. And we put ethanol in the other lumen overnight to essentially clean it and prevent infection from growing there.) Only on this particular morning, when I drew back, expecting to draw ethanol and a little blood to tell me that the line was clear, I got TPN. Not just a little… I filled a syringe with it.
That’s not good. Those two lumens aren’t supposed to mix.
So, I called the IV team and they said what I suspected they would – Patrick would need an x-ray where they put contrast in the line to see where it went. Then I called the GI on call, a fellow named Dr. Varier who told me the same.
I packed a bag of toys and diapering supplies, thinking that worst case scenario we’d need to spend the night and have the line replaced the next day.
We headed up to the ER because they could do the X-ray, put in a peripheral IV to replace the TPN, and admit us from there if the stay needed to be longer. It was a fairly slow morning and so they were pretty quick and efficient getting those things taken care of.
Patrick was bored and restless there, as usual, and sleepy from a restless night. So I was grateful when he agreed to let me wrap him in a blanket on my lap and read him books. I didn’t realize at first that it was a sign he wasn’t feeling well..
But half an hour later, he started to shiver, and then started to cry in that scared “I know this awful feeling” way that comes with line infections.
I checked his temperature and it was still normal, but when the nurse came in to check on us, I told her he’d have a scary high fever within the hour.
The radiology tech showed up to take us to X-ray and Patrick screamed his way all the way through the study as his fever climbed. Sadly, the test confirmed what I knew… if you put contrast into one lumen, you could easily draw it out the other. It also showed evidence of a leak in the line that the radiologist thought was under the skin.
By the time we made it back to the room, Patrick had a full-blown fever and the nurse was more than willing to give him some motrin and put him on monitors. Thankfully, soon after my sister arrived with lunch from my mom. And when they came to place an IV to give Patrick fluids, she opted to stay to comfort him, even though it meant she’d have to hang around until her ride could come again.
I was so grateful she was there because the next hour was a flurry of activity. Based on the X-ray, they decided that Patrick’s line needed to be replaced right away. And they said that the nature of the break meant that it would likely need to be disected out of his body. (Broviac lines are tunneled under the skin of the chest. Usually to remove the line, you can just pull them out of the entry point… but with a broken line, if you pulled it it could snap in two, so they were planning to cut down the entire tunnel and lift the line out. When the surgeon came to get my consent for the removal, I asked them if they’d consider placing a line at the same time, possibly even wiring it over the old line and putting an IV in the same vein. She said she didn’t know, but let me consent to both procedures.
Then we hurried off to ultrasound to let the surgeons see what available blood vessels they could place a new line into. (Thankfully, Patrick’s motrin was working by then and he was calm.) When the ultrasound was over, surgery was in the room waiting to take Patrick.
So, we piled all of my bags and Patrick onto a gurney.. packed up the fluids and antibiotics there hadn’t been time to start… and hurried upstairs to meet the anesthesiologist.
Jill left us at the OR desk. And Brian texted to say he was minutes away.
While we waited at the desk, I made a hurried attempt to drain Patrick’s belly to reduce the risk of him aspirating. The anesthesiologist arrived and we started to discuss those risks.. But before we could finish the plans, the surgery resident appeared again with news – the doctors had changed their minds. They decided that the fever made it risky to put in a new line – and in the hopes that they could only have to take Patrick to surgery once, they were cancelling the procedure and putting him on the schedule for Saturday instead.
By the time Brian made it to us, they had found a room and were ready to admit us.
At first I was really upset. We knew this line was going bad and were ready to see it go. Still, it made sense to me to do what we could to attempt to wire over the line – and besides, Patrick felt awful.. and so we stayed. Every doctor and nurse seemed to have an updated version of the plan. I didn’t know at all what was going on.
With surgery cancelled, Brian headed back to work while I finished with the admission. And, because Patrick felt sick and hadn’t yet had a nap, we snuggled up in the hospital bed together.
Then the IV team came in and said that the break wasn’t under the skin at all, but at the repair site, and should be able to be fixed. I just shook my head – that didn’t seem right. But they said that it was at least worth a try, and so I agreed to let them repair the line. The head of the IV team did this one to make sure it was right.. still, he had the same problems as the 3 repair attempts before.. the line was leaky and didn’t flush right. Still, we hoped it would work well enough to at least draw blood cultures.
After the glue had a chance to dry, they used TPA to unclot the better performing of the two lumens and succeeded in drawing cultures. With the line working in at least one lumen, they decided to run antibiotics through it. (We didn’t even touch the other lumen that night because it has been so problematic over the past months that it seemed best not to push our luck by attempting to do anything with it until the glue had 24 hours to dry.)
And we waited. Patrick’s fevers stayed away, but then again, he was gettin tylenol, along with benadryl, to help combat his allergy to one of the antibiotics. He was more than content to just lay in bed with me watching Signing Time or reading books or sleeping, and I know all too well that a calm Patrick is a sick Patrick.
Friday that’s what we did.. just stayed in bed. Patrick seemed to be perking up some and having a couple of visitors helped. He lost one IV. (It was iffy and the sneaky nurse took it out while I ran upstairs to keep an appointment Patrick had scheduled with his rehab doctor, Dr. Gooch.) But they got another one in. Sadly, the 2nd IV require his hand be immobilized so Patrick just wouldn’t even try to use it. So I turned pages in books for him and helped to fetch the things he wanted.
Brian didn’t feel right about the radiologist saying the line was leaking, but the other doctor’s diagreeing with the results, so in morning rounds I asked them to review the x-ray again and tell me if there was or was not fluid leaking under Patrick’s skin.
Well, they came to a conclusion late in the day. I’d snuck away to a doctor because I was worried I was getting sick myself, so Brian was with Patrick when the team came by to say that the line was, in fact, leaking… and that they wanted Patrick to go to surgery that night to have it out.
So, I hurried back to the hospital as quickly as possible. Only to find that 3 trauma cases had just come into the E.R. and surgery was cancelled.
Meanwhile, they still didn’t have an explanation for Patrick’s fevers and so, with the glue dry for 24 hours, they decided to try to get Patrick’s other lumen working well enough to draw blood cultures from it. The first attempt didn’t yield many results.. and just before dinner, they put one more dose of the declotting agent in… And when they drew it out and flushed the line, Patrick started to cry.
Yup, that “I’m getting a scary fever, mom” cry again. I grabbed a thermometer and started watching. Within an hour, his fever had risen to 103.
The nurse gave him his prescribed tylenol as early as was safe. And the resident doctor happened by and saw how sick he was and prescribed ibuprofen, too. But that was all we could do. I stripped him down to a onesie and help him and sang to him until his fever finally dropped and he was able to sleep.
We knew then that the line HAD to go. Thankfully, Patrick was on the schedule for surgery the next morning. We did some fast talking to convince the surgeons that he could have a new central line, even though he was having fevers.
They took him to surgery a little after 11:00 a.m and he was back in the room recovering just after noon. The surgeon said they’d have “technical difficulties” placing the line, so he’d lost a fair amount of blood… But that otherwise things had gone smoothly.
Usually, Patrick is miserable and grumpy waking up from anesthesia, even for small procedures. I get called back to recovery to find him miserable and the nurse desperate for my help comforting him.
But this time, he was awake before I even got to him. He wasn’t exactly happy, but he wasn’t grouchy, either. He came back to the room and slept for the next couple of hours.. then woke up and asked me to sit in his bed with him. He snuggled right up and was – well, fine!
By morning, he was ready to be up and playing!
We have no doubt that it was the line making him sick and that as soon as the bad line was gone, that he felt better.
And so, with mixed emotion, we said goodbye to lucky line number 13 and welcome what we hope will be lucky 14 instead. They weren’t able to put it back into the same vein, for fear of infection (though nothing ever grew), and after seeing the ultrasound, I doubt we’ll get another line into that vein on the right again… But it is so good to see Patrick feeling better! Even his gut is more settled.
Praying this line lasts another year or more.
Patrick Hoopes 