Line woes

Yup. I jinxed myself. By drawing parallels including a hospital stay in my last blog post, I jinxed myself. Or Patrick. Or something.

Oh, and I’m a bad, bad blogger as this story will have to go back 3 weeks to explain.

3 Sundays ago, I was trying to do the dishes and Patrick was trying to help me do the dishes and it wasn’t going well at all. So I kept turning him around and sending him back to the living room to play. And guess what, he did! He went and played and let me finish the dishes.

Only, when I got to the living room after the dishes were done, I found that Patrick’s tubing had gotten caught on the phone stand in the kitchen… and he, being urged to go play, had… He’d gone as far as he possibly could, pulling the line taut enough to pop open the safety pin that secures it to his shirt.

I immediately got the line unstuck, but the lumen that had been stretched looked, well, stretched. It looked longer than the other one.. and on closer inspection I found that Patrick had pulled hard enough that the tiny little plastic piece on the end had been pulled out of place.

I cleaned it and wanted to just leave it, but the cautious part of me said to at least have IV team check it out. So, we got Patrick’s pajamas and away to the hospital we went for the evening.

IV team looked, but they weren’t any more sure than I was what you’d find inside the line, and so decided it was best to cut off the end and use a repair kit to replace it. The work was quick and he was only an hour late for bedtime.

Thursday, though, I noticed that Patrick’s shirt was wet in an odd spot and it smelled like TPN.  So I called a neighbor to come help me to take off his dressing and look for leaks but couldn’t find any. We put on a new dressing and decided to watch it.

That night Brian worked an all-nighter. At 3 a.m. I woke up just wide awake. If you know me, I don’t do that.. at least not if things are ok. But there I was, not sleeping… and then Patrick’s pump alarmed. I went in to check and found that the repaired side of his line wasn’t under the dressing in anymore and was all tangled, causing the pump to alarm. He was also wet again… with a sticky sweet liquid like TPN.

So, I switched out the lumen that the TPN was running through and flushed the other only to, once again, not be able to recreate the leak. I came to the conclusion that the repair was probably leaking, but only when there was an occlusion and pressure built up. I also came to the conclusion that he hadn’t slept well so far that night and could use more sleep. He had an appointment at 10 a.m. that we’d waiting weeks for and I opted to leave things as they were until after that appointment then go get it repaired.

He, however, came to the conclusion that he didn’t know what time it was and didn’t want to go back to sleep and it was one very, very long night!

The next day we headed up to the hospital, explained my theory about the repair being faulty, and they cut it out and repaired the line again. They were so busy that it was well into the afternoon before that was all done. But the line worked and went went back home.

Sunday, except for church, Brian spent the whole day making a fabulous Sunday dinner for his family in celebration of my birthday. Patrick did great through the whole dinner.

Then, family left and I flushed his line, ethanol locked one lumen and connected TPN to the other. Within half an hour, Patrick started to lay on the floor and beg to be held by daddy. These are both signs of him not feeling well, so we grabbed a thermometer to check and his temperature was up, but he didn’t yet have a fever. We kept him up an extra hour to watch, but a fever never came.

Finally, we put on his pajamas, gave him his meds, said prayers and put him in bed. But less than an hour later, he woke up crying. I knew as soon as I picked up him that he had an infection. There’s a certain cry and a restlessness in his legs and a certain way he arches his back. The thermometer did not agree, but I made Brian pack our bags regardless.

Before the bags were packed, Patrick had a low-grade fever. I called the doctor on call to explain symptoms and tell him I was bringing Patrick in. He told us to go directly to the E.R. Before we left the house, Patrick’s temperature was 102.

Thankfully, the E.R. was unusually slow for a Sunday night and we got quick and ample attention. They gave Patrick some Motrin right away, as his fever had reached 104 on the drive up. They took his vitals, drew blood cultures and a CBC that showed a low white count. (Last infection came with a low white count, so this convinced me he was sick.) And then they started him on antibiotics.

Amazingly, he fell asleep in the E.R. and when we got to the floor just after midnight, let me rock him right back to sleep again. By 2, he was feverless and sleeping peacefully in his own bed. It was our smoothest admission night ever.

We waited 48 hours more, but the blood cultures never grew to explain the fever. This doesn’t mean there was no infection. The timing of the fever indicates that there was bacteria in Patrick’s line and when I flushed it to connect TPN, I flushed it right into his heart. However, what it does prove is that we caught the symptoms SUPER quickly and treated the infection before it grew in the bloodstream. The ethanol lock most likely killed any evidence there was of it in the line.

It’s getting harder and harder to keep Patrick in a hospital room. He has to have monitors on for the first day and staying close enough for them to read makes him stir-crazy from the get-go. Thank goodness for child life specialists whom he knows and trusts, who bring him toys exactly suited to his tastes, and who will play catch with him ad nauseum.

I taught him to hide in the cupboards this stay and he spent most of his playtime going in and out of them.

Our second night in the hospital, Patrick went right to sleep. However, his nurse came in just an hour later, leaving the door wide open for light and started talking to me in what I call her “daytime voice” to tell me about how to safely give Patrick’s replacement fluids. (Sigh. As if I didn’t already know.)

That set Patrick to tossing and turning and nothing I did could settle him. An hour later, he was wide awake. We watched Bob the Builder 3 times. He discovered the fun reaction you get when you slap mom in the face repeatedly. Finally, at 2 a.m. the nurses took him for a walk so I could grab a nap.

Rested and calm again, I went and brought him back to the room and finally got him to sleep. But alas, within half an hour, he was back to tossing and turning violently. Something obviously felt off, but I couldn’t figure out what.

At 4, I asked the nurse to track down help for a priesthood blessing. She came back with our favorite nurse from Patrick’s surgery recovery. Patrick was happy to see him. Then, the doctor came and we talked about options and decided to give Patrick some melatonin to help him rest. He fell asleep right away and slept till noon.

We hit 48 hours on cultures that night at midnight, but as we hadn’t slept the night before, I’d accepted the offer to give Patrick a little more melatonin to help him sleep. This is good because we had the same nurse again the next night. Not only was she just as noisy, but the evening started out so crazy that Patrick just ended up crawling onto my lap on the bed and falling asleep while she tried to finish his scheduled cares, meds and vitals for the night.

He slept well till 5, then was wide awake asking for the nurse to check his BP. So, we got up and had a pretty fun morning wandering around the hospital visiting his favorite nurses in the other units. We found a pod in infant unit that was completely empty and one of Patrick’s favorite primary nurses said it was ok for him to play there and move the furniture. He did for nearly and hour.

And then, Brian took an early lunch break and brought us home. We were home by noon and slept all day.

So far, Patrick’s symptoms have not returned.

Overall, it wasn’t a bad hospital stay. He played in the playroom for several hours. We visited spiderman I don’t know how many times. We discovered that he likes chex mix and that it’s safe for him to eat. He got his very own badge pull and we made friends in the cafeteria.

But, I think we’ve seen our share of hospitals for the holiday season. I am hoping that Patrick agrees.