Line #3

In recent conversations, I’ve been reminded that you don’t live the Terran Life daily (it’s OK, your life is beautiful in other ways 😉 and a quick summary and some key definitions might be helpful:

Overview:
– Terran’s condition: In a bucket called “short gut”, Terran is missing ~80% of his intestines including everything from the beginning of his jejunum to the end of his ascending colon. This means he can’t absorb nearly enough nutrition from eating food.
– Terran’s treatment: He’s given 100% of his nutritional needs via Total Parenteral Nutrition (TPN), pumped continuously through a central venous catheter (central line). He can and does eat – getting some calories from breastmilk and now solids. Most of this is for “practice”. Best case scenario his gut adapts to start absorbing more nutrition from food so he can be less reliant on TPN (or not at all!).
– Terran’s surgeries to date: (1) July 2021 – Gut connection (2) August 2021 – Central line placement #1 (3) October 2021 – G tube (4) Jan 2022 – Central line replacement #2 (5) May 2022 – Central line replacement #3

Key definitions:
– TPN: Total Parenteral Nutrition is a liquid medication containing electrolytes, fats, and vitamins. Terran has a nutritionist who monitors his blood test results and adjusts his prescription as needed. Walker and I infuse a new batch each night, which runs for the next 24 hours.
– Central line: Terran’s brand is a “Broviac” central venous catheter. It’s inserted into a main vein (typically jugular or subclavian) and travels all the way down to the side of the heart. The catheter helps protect his veins from the medication. Anyone who needs chronic IV care will have a central line.
– Dressing change: There is a large bandage over the central line that Walker and I change once a week. This helps protect from infection. We have to wear masks while doing the change because there’s such a high risk of infection. Fresh out of surgery, we have to be extra delicate because the skin hasn’t healed around the site yet. There’s an art to the dressing change – each new line has it’s own challenges and we work to figure out the best way to secure the line so it doesn’t break (again). Our current method includes two bandages and a grip lock (sticky flap to prevent pulling).
– Cap change: Another weekly activity, Walker and I change the blue cap on the end of Terran’s central line once a week. This is also a mask-on high-risk event and mishandling it caused the first central line bacterial infection.

Now that we’ve gotten that out of the way… It’s taken me so long to sit down and write this post because this last hospital visit was so… MUCH. This will be a long post but bare with me, if you’re willing.

Remember back in January when we were in the hospital for a week with the first blood infection? The doctor warned us that it was a “sticky” bacteria and even though the blood results showed we had cleared the infection, it was possible the body had created a “bio film” around the bacteria, hiding it from view. Well, she was right. The bio film slowly degraded and the bacteria came to life again, causing a repeat infection. It’s possible that the fever could have been from the cold that he contracted that weekend instead of the bacteria. Either way, they found the bacteria in the blood through the typical battery of tests they do when a fever strikes. That’s all to say Terran was in MUCH better shape this time around, possibly because the bacteria wasn’t as rampant. We were admitted, tried to kill it with antibiotics, and failed. Once it was determined that the bacteria was actually stuck to his line, the line needed to come out and be replaced.

Day 1 – Admitted. Rhinovirus and blood infection confirmed. Terran is wiped out.
Day 2 – Attempted to clear the infection with antibiotics. Terran still sleepy.
Day 3 – Blood cultures still positive. Not at therapeutic level for antibiotic yet. Terran feeling better.
Day 4 – Blood cultures still positive. Not at therapeutic level for antibiotic yet. Terran looking/action normal.
Day 5 – Blood cultures still positive. Finally reach therapeutic level for antibiotic. Plan is made in case Terran clears the infection to cycle down to 22 hours of TPN (from 24 hours) to allow time for an antibiotic “lock” – where antibiotic sits in the line to kill and prevent bacteria growth.
Day 6 – Blood cultures still positive. Decision is made to replace the central line.
Day 7 – The most traumatic day. Peripheral IVs become a big issue. Line is pulled at bedside due to limited surgical room space.
Day 8 – A third IV is placed to draw a blood culture. Mamazilla makes an appearance. Terran acts depressed as he’s lost use of his left hand and foot to IVs.
Day 9 – New central line is placed. IVs are removed. Terran is elated that he can roam and play again!
Day 10 – Wait around for medication and equipment delivery then leave the hospital. Terran breathes fresh air again.

The first few days were tolerable – waiting around to see if Terran could clear the infection. He had done it before (or so we thought) so why not this time, too? At this point, it wasn’t confirmed his line was contaminated so there was hope it wouldn’t need replacing. They use a heavy-hitting antibiotic (vancomycin) and therefore the dosing is very specific. Too much medication does damage to the kidneys. Too little doesn’t clear the bacteria. I remembered from January it took a long time to get to the right level (which allowed the bacteria more time to “stick” around). I mentioned this on Day 1 and so the doc increased his initial dosage but it wasn’t enough because it still took days of slow increases to get to the “therapeutic level”. His blood culture tests were taking longer and longer to come back (10 hours, 30 hours, 36 hours…) so there was hope he could break through the 48 hour limit to count as “clear”. Thinking there was still a chance, we made a plan to change his TPN to cycle over 22 hours instead of 24 hours (same quantity runs at a faster rate) so we could let an antibiotic “lock” sit in his line for 2 hours each day. Typically the team waits until kids are 1 year old to cycle down the time of TPN (blood sugar regulation thing) but Terran was “forcing our hand” to consider it sooner. His nutritionist said he would be fine – he doesn’t get much glucose through his TPN anyway and he’s a chubby, healthy kiddo. The next morning we realized we’d have to pull the line – whomp whomp. The good that came from this? We still got to cycle to 22 hour TPN. That means Terran has 2 hours UNTETHERED every day!! Hopefully each month we can add 2 hours to that time. Best case scenario, he’ll have 10 hours “free” time by November!

Everything got chaotic when the decision to pull the central line was reached. Terran needed a peripheral IV for electrolytes while his central line was out (policy is to wait 2 days to “clear” the infection before placing a new line). The first IV team that came in poked him FOUR TIMES before they got one IV placed. Meanwhile Terran is screaming at the top of his lungs while they dig around and ultimately blow several veins. We thought the trauma was over when the nurse came in and said they needed another IV placed because the antibiotic wasn’t compatible with the electrolytes (meaning they can’t run through the same IV at the same time). Terran’s veins were clearly difficult to manage, so I asked her to consider who might be the most experienced team for the job. Good thinking on her part – she called the NICU team. Even they had trouble – taking THREE TIMES to get one additional IV. They wouldn’t touch his AC veins (elbow crux) for absolute emergency since they’re the most reliable in case his electrolyte or antibiotic locations failed (his two literally life-saving lines). He only had TWO locations left at this point. To see the NICU team walk away with their hands up was a scary feeling. Even worse… they asked me to hold him and “calm” him while they worked. There’s no calming a baby who’s getting his veins ripped apart. Terran wouldn’t breastfeed for over 12 hours after that for lack of trust. My heart broke. As if it couldn’t get any worse, the next day they needed to poke him AGAIN for the blood culture test because those must be drawn from fresh peripheral locations. I nearly lost it. Was it necessary? Yes. Was there great risk in losing his two remaining access points? Yes. I asserted that there was no more room for risk. We needed an ultrasound to guide. We needed the anti-anxiety medication they gave him for his central line removal (more on that later). We needed to pull out ALL the tools because losing another access point was not acceptable. The hospital has a process for sending in the floubotomy team to “try” before calling the IV team. When the flubotomy team came in I said, “I understand you have a process to follow. You can ‘look’, but you are not poking my baby.” We got the ultrasound. We got the meds. They got the blood draw in ONE try!! We put in an IV since the vein would likely collapse after removing the needle. This back up proved necessary when one of his IVs failed and we had to switch to the newest location. Think it’s over? Oh no. The next day they wanted ANOTHER blood culture test which meant they wanted to poke his LAST vein. Absolutely not. Luckily the NP had been with us all week and was very quick to understand that this was a no-go. She was able to convince the team that we needed to save that vein and so we went without the blood culture. It’s not that we didn’t trust the IV teams – it was clear that their best equipped teams still had trouble with Terran. His body was just more fragile than they are used to. I’m so thankful that Walker and I were there to advocate for Terran. There were so many groups in and out, looking at Terran, giving him meds, doing tests, that it was hard for us to keep track and we were with him the whole time! I can’t imagine what would have happened if we weren’t there. Too many fast moving pieces for effective communication – we were the only constant to keep everyone in the loop and to set boundaries.

Smack dab in the middle of IV Hell, a surgeon removed Terran’s infected central line at bedside. We happened to be at the hospital when all the operating rooms were shutting down for maintenance. They were only accepting life-and-death surgeries. The surgeon came to talk to us ahead of time, saying that if there wasn’t too much scar tissue, he could remove Terran’s line in our room. We liked that option because a) he said he’d know right away if it was doable and would stop if it was too ingrained, and b) we’d avoid Terran going under general anesthesia which comes with it’s own risks like aspirating. After we had the first IV in place and switch his nutrition, Terran got a nasal anti-anxiety medication that made him hilarious and loopy! While Walker and I held him down on the bed, the surgeon cut open his insertion site and started opening him up with a pair of surgical pliers. He dug into him to break up scar tissue, took the tool out, tugged on the line, and went back in. Every time the pliers went in, Terran started wailing. It was so hard to watch. The surgeon was clearly having more trouble than he bargained for, and even said “that took longer than it should have.” When he finally got it out, he sighed and explained that the “cuff” had done “what it was designed to do” and broke off inside Terran’s body. Not a big deal since he was going in for surgery for a new line in a couple days and they could fish it out then. In adults they just leave it in there. That medication was a godsend because Terran seemed to forget all about it after the surgeon left.

So much chaos in such a short time period. I didn’t realize how much stress I was holding onto until I walked outside and took a breath.

Terran’s new central line was a quick surgery – took about an hour. This was our third central line, so we knew the drill. That said, we were a little shocked when we saw him. The good – the line was the next size up (thicker) which means it’ll be harder to break (hooray!). The bad – the line is SO LONG. Long enough that even the nurses and docs commented on it. The problem with a long line is that the most secure method we’ve found is to cover the majority of the line under his dressing, and then use a grip lock on the very end. Now there’s about 3x as much length to get under the bandage. That means multiple loops, twists, and turns on his body. Our next clinic visit is with the LIFT surgeon so I plan to ask what the deal is – is there a benefit we don’t know about to having a longer line?

One cool thing about central lines is they are usable as soon as they’re in. Once his nutrition and antibiotic were switched over, we were able to remove his IVs! Then something startling happened – Terran started SCREAM LAUGHING and raging around his crib!! He had been bogged down for 2 days, with 3 IVs in his left hand, left foot, and right elbow crux, unable to play fully. You could see he had given up. But then – freedom! He was so self-entertained I was able to focus on work for a little while (while laughing alongside him because he was SO HAPPY).

I’m grateful for my work situation – our team is so talented that all my work can be covered by others when I’m with Terran. My leaders have been amazingly supportive, allowing me total flexibility in work schedule. In the week leaving the hospital, I had to administer antibiotic infusions every 8 hours for an hour each: 6-7am, 2-3pm, 10-11pm. Everyone was accommodating, moving afternoon meetings to a virtual format. To have the support of my team was a welcome relief in time of serious stress. If you’re reading this, THANK YOU.

We’re through the antibiotic infusions, and have transitioned from an antibiotic lock to a much simpler sodium bicarbonate lock. We’re “back to normal” but with a consolation prize of 2 hours “free” time without the IV backpack every day. As Terran is moving faster and farther every day, we relish the time he can move unencumbered. There’s some extra work involved in getting him that time, as we have to administer the lock in addition to his TPN every day, but it’s SO worth it. He’s moving whether the TPN is attached to him or not so Walker macgyvered a crane that hold his TPN backpack up above him and swivels around so Terran can move all around our living room area without pulling on his line. It’s not perfect, but it’s pretty damn impressive. Walker’s creativity and thoughtfulness are remarkable. Terran definitely picked the right dad! <3