3 ml forward, 2 ml back

Terran’s Broviac central line surgery was a success (hooray!). The only hiccup was it’s now accessed via the subclavian vein instead of the jugular. Achieves the same result. The surgeon was having trouble threading the catheter through the jugular but an ultrasound afterwards confirmed his veins are all a-ok so no worries about using it at a later date. All central lines need to be replaced at some point for a variety of reasons.. kids outgrow them (the catheter isn’t long enough to make it to the heart anymore), infection (everyone gets one at some point), or the line breaking (we already dealt with this in the PICC line). Our job is to minimize these replacements because each one invades a new vein and comes with its own surgical risks. This will be extra difficult when Terran starts rolling over, crawling, walking… the home TPN doesn’t need to be gravity fed so we can put it in a backpack, in his stroller, or really anywhere. Some creative parents latch a dolly to their kid that carries the TPN while the kid crawls around. Really looking forward to engineering some awesome gear for Terran! Ideas welcome! 😉

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Saturday was a big day for Terran- surgery in the morning, first feeds in the afternoon! He started on a minuscule 1 ml, but hey, it’s something! We defrosted some of my long awaited colostrum, attached a syringe to a binky, and Terran sucked it down. As soon as he realized what it was, that boy knew exactly what to do. His eating instinct is both a wonderful and a sad thing… when we’re skin to skin, he’s rooting, trying to find the cure to his pain and what he knows is his. It’s arguably the saddest part of the whole ordeal- having to reposition him away from where he’s migrated and give him a silicone replica of the real deal, watching him suck profusely and then resolve himself to his ever-hungry state. I’m tearing up just writing this. I’m committed to eventually breastfeeding, even if it’s a “dry” breast (post-pumping) so he doesn’t get overwhelmed. It’s a relationship we both crave and yet are unable to have right now. How he took the feedings was evidence of that…

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Saturday 1 ml every 3 hours- no problem. Sunday 2 ml every 3 hours- no problem. Monday- 3 ml every 3 hours- problem!! Terran started producing green spit up every few hours, almost every hour at night. We had clearly gone too far. Monday- stop feedings. Tuesday- chill and settle spit ups (evening is still hard). Wednesday- contrast study in the morning shows the GI tract is still open (concern was that scar tissue or otherwise had closed it). Terran is officially transferred to the Liver and Intestinal Failure Team (“LIFT”) and after the contrast study, suggest resuming feedings at 2 ml since 3 ml was his breaking point. I repeated how much trouble he had with both contrast studies (he threw up a good amount of it throughout the day and was lethargic for several hours) so we compromised at 1 ml today while the contrast was sun in him and we’ll move to 2 ml tomorrow. Give the boy a chance.

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I’m very excited to finally be transferred to the LIFT team! It’s like making it to the “end boss” of Level 1 of the worst video game of your life. I don’t recommend playing, but when you’re thrown into the game, it’s nice to see some progress. The LIFT team will be Terran’s pit team as he progressed through adolescence. This team is THE team of WOMI (WA, OR, MT, ID) + AK, HI. We’re incredibly lucky to live in the same city as Children’s as our outpatient weekly visits and any emergencies will be with the core team. Emergencies include the oh-so-common fever. Every fever could be indicative of a central line infection which is serious business.

Next up: (1) Hope Terran is comfortable on 2 ml feeds, don’t push it to 3 ml too soon. (2) Choose a home care program and meet with the training team to learn how to care for the central line. Walker and I are so excited to learn about Terran’s care and finally (3) Get him home!!