Tag Archives: TPA

The devil you know vs. the devil you don’t

Patrick and I had the most frustrating of mornings yesterday. Got up as usual and started out happy enough, but then it was time to connect his 8 a.m. antibiotic. I went to withdraw the ethanol lock out of his line and it wouldn’t come. Tried to flush. Wouldn’t budge.

So I grabbed a dose of Cathflo (the super declotting agent for central lines that I am learning I am VERY lucky to be allowed to administer by myself at home.) Worked it into the line, which took me almost half an hour. I left it in for half an hour.. drew back and the line drew back beautifully.

Tried to flush, and nothing. Let go, and the syringe filled with blood.

Not good. I tried several more times and just got the same result. The antibiotic was due. The TPN was running. The two can’t go through the same tube at the same time. And I was stuck.

So I called the hospital and asked for the GI on call, but they wouldn’t give them to me because it was almost 9 a.m. and the GI clinic opened at 9. So I called Patrick’s nurse, and she was stumped. She called the department at the hospital that specialized in central line repairs, and they were stumped.

Finally, Dr. Jackson’s nurse got word I was calling and called me back. And she was stumped.

It really seemed like the blood was flowing backwards in the line.. out instead of in. Which either meant a slipped placement.. or a line broken under the skin.

Both line killers.

So – while they did their research, I did the only thing I could think. I said a prayer. I put one more dose of TPA in the line. I forwarded our home number to my cell phone. Then, I packed Patrick up and we went to mommy-and-me exercise class. Makes sense, right? We needed some normal, and some distraction. And it was his last guaranteed chance to go to class before school.

Halfway through exercise class, as I was sweating and huffing and puffing… in the middle of the popcorn song where we jump all around the room pretending to be popcorn… my phone rang.

It was Dr. Jackson’s nurse telling me that they’d arranged an admission to the Rapid Treatment Unit. The plan was to evaluate the problem, do an x-ray if possible, have the IV team look at things. And then, she said, it didn’t look good.

I hung up and stayed till the end of exercise class. Why not?

Then we came home, I showered, and I packed a suitcase to see us through a one day hospital stay and a likely surgery.

We rushed up the hospital, lugged our way into the RTU, got vitals, met our nurse…

And then tested the line.

And the 2nd dose of TPA had fixed the problem. Best bet? That the clot was working like a stopper that allowed blood to flow in, but not to flush. Kind of the opposite of usual line function. And that it was blood trapped in the line that was flowing back after attempts to flush… Not the line bleeding as it appeared.

We called it a nurse visit. The doctor came to “not” consult with me, so we wouldn’t be billed for the service. He’s seen us struggle to keep this malfunctioning line going for the past 15 months.

I asked him if he’d give up and replace it yet. Knowing the risks of lost access for Patrick.

He shrugged and told me, “It’s the devil you know versus the devil you don’t.”

How often that is true with Short Gut. How often do we weigh the choice between the familiar but uncomfortable present situation and the risk of an uncertain outcome?

The choice about transplant is certainly that kind of a thing.

It takes a lot of faith and prayer and hope and stepping into the darkness to move along this journey.

And a lot of mornings derailed by emergency hospital admissions that leave dirty dishes and dirty laundry and a mountain of other unfinished tasks while we wrestle with uglier demons.

Brian and I have been doing a lot of pondering and praying to know what is the best choice about this troublesome line.

If you’re praying for us, that would be a good thing to pray for. For us to know whether to keep fighting with this line or take the risk of swapping it out in the hopes of fewer infections and clots and frustrating mornings.

Outpatient

Last entry, I wrote about Patrick coming down with a common childhood illness and how much more complicated that is for him.

Well, as predicted, this illness definitely had it’s impact. The day after that blog entry, Patrick started throwing up. As it turns out, herpangina, better known as Hand, Foot and Mouth is caused by a series of viruses that live in the intestines. Symptoms indicate that Patrick’s was caused by one called “enterovirus.” As a result, Patrick started to lose so much fluid by g-tube that I was having a hard time keeping up replacing the fluid.

By the time Brian got home from work, he was pale and weak, running a fever, and we were worried. I put a call into Patrick’s GI to ask if they wanted to check blood cultures. By the time they called back to talk about putting in those orders, we’d changed our minds and asked if he could just come in for a night of observation. The night went well and Patrick was obviously feeling better with no additional treatment and by morning, we were asking to go back home. (Especially since we’d barely gotten any sleep.)

By early afternoon, we had been officially discharged when we discovered another problem. When I went to connect the TPN, one of Patrick’s lumen’s wouldn’t flush at all. I tried a few times without success. But we were sleepy and his nurse timid. We’ve unclotted lines lots of times at home. He still had one working lumen, so I said “let’s go.” On the way home, I made calls to get the anticlotting agent sent to me.

All night long I tried to work it, getting up every couple of hours to try again. It just didn’t work. By morning, I knew it was a lost cause for my efforts. But by this time Brian was also sick, I hadn’t slept in 2 nights, and Patrick needed rest. So I made phone calls instead of running in. Eventually, we made arrangements to go in to have the hospital staff try to unclot the line. We arrived around 8 p.m., (we asked to wait until we’d at least had Brian’s birthday dinner with his parents)… And the nurse tried all the things I’d tried. Finally, at midnight, we declared it a lost cause and they sent us home.

Patrick’s doctor called the next day to tell me that, as we suspected, Patrick would need a new line. And we went on, finally feeling a bit better, with celebrating Brian’s birthday. We took Brian shopping for a few big wishes, then went out to dinner. That was all the energy any of us had.

I talked to surgery the next day to make arrangements for the new line to be placed. Since Patrick still had sores in his throat and his surgeon was out of town anyway, we scheduled it a week away on Tuesday.

That was a week ago today. The surgery went well. We checked Patrick in at 6 a.m. then talked to the nurses, surgeon and anesthesiologist who’d take care of him. The anesthesiologist said what we all know, “He looks a lot better in person than on paper.” Still, even minor surgeries can be major for Patrick so we didn’t really relax until his surgeon came and told us all was well.

The only complication was that Patrick was bleeding fairly easily. But that seemed to be under control. We came home and I sent Brian off on a business trip to DC the next morning.

His occupational therapist came the next morning as I was trying to find an assistant for the day-after-surgery dressing changes. Since we’ve been specifically trying to help him with those, she volunteered to help. All went smoothly and we were playing with her after when I noticed that I could see blood on the new dressings.

I peeked under his shirt to find that the old line site had bled since the change so much that it had soaked the dressing and was now soaking into his shirt. So his OT made a quick departure as I called the hospital who suggested I change the dressing again and apply pressure. It worked and he went to sleep.

But, come 6 p.m. the same problem came back. I called the surgeon on call this time and got the same instructions. They worked again, but I realized that Patrick needed to be helped to be a little less active until things healed.

Lucky for him, we’d bought a zoo pass the weekend before, so I packed him up and went to the zoo where he’d be strapped down in the stroller for the morning. It worked and we had a great time looking at the animals (I think the zoo deserves a separate post)… He only scratched off his dressing once while we were there, and I was able to get a new one on without any bleeding at all! And I managed to keep the IV tubing away from the stroller wheels until we were exiting, when they got tangled so badly they broke, but fortunately I pulled off a quick tubing change without any incident and we made it home safely and ready to nap.

He seems to be healing just fine from the surgery now… and his sore throat is gone. His tummy even was better for a couple of days. He’s back to losing a ton of fluid again this week which means either the enterovirus is still there… or he’s been exposed to something else… which is possible.

It’s work sometimes to keep Patrick outpatient, but as my next posts will show, it gives him the chance to experience the joys of life, which makes it worth all my work.

Sorry this entry is so long! Between Patrick, Brian and myself being sick at various times and me “playing Florence Nightengale” as Patrick’s case manager put it, this is the first chance I’ve had to catch up stories. I thought I’d start with the medical first so I can follow with tales of fun later.