44 Hours of freedom
Olivia update: Nov 12th, 2021.
If you happened to catch my previous update on Facebook, you might be wondering how Olivia is doing right now (after all, it’s been over a week since I posted it). However, if you missed that post, don’t worry, I’m about to fill you in on the missing details.
You might say that it all started on the morning of October 13th. During a zoom call with her complex feeding team from BCCH, we set in motion a plan that was several months in the making. Together her team (myself included) came up with a plan to give Olivia a 4-hour break from her TPN every day. For the longest time, we avoided this subject because of how our previous attempts to wean her TPN had gone. However, a couple of months ago, we began to feel hopeful about making another attempt when we discovered that TPN was no longer her primary source of nutrition. This change proved to be one of the few positive things to come from the pandemic, but ill talk more about that in an upcoming post (titled, Finding light in the darkness). At the time of our zoom call, Olivia was getting over a sinus cold that she caught while at preschool, so we decided to wait till she was better before pausing her TPN. After talking with her team, I decided that Nov 2nd would be a safe time to start locking her line. In the weeks that followed, we prepared ourselves and our nursing team for this new adventure. When the time came, I placed the order for her TPN, Taurolin, and the extra supplies required for locking her IV line. Normally when an IV line gets locked a product called heparin (an anticoagulant) is used, but because Olivia has had multiple line infections, they prescribed us a product called Taurolin (an antimicrobial and anticoagulant). As I waited anxiously for the 2nd to arrive, my internal thoughts became trapped between a battle of excitement and self-doubt.
Nov 2nd: Olivia’s first 4 hr disconnect
Although it felt like the blink of an eye, 2 weeks had passed, and I found myself starring at a sealed box of supplies like it was ready to explode. I originally made plans to disconnect her from her TPN at 1 pm that day, but instead, my subconscious mind decided to go rogue (in hindsight, I probably procrastinated because I feared for the worst possible outcome). Upon opening the box, I had decided that I needed to perfectly organize all the medical supplies to make room for her new items. My supply organization did not go as planned, and before I knew it, it was 2 pm, and I began to feel panicky. That underlying feeling of anxiety that I was ignoring had built up into a shaky adrenalin-fueled panic as I rushed through the rest of my organization. I did my best to steady my hands as I prepared the supplies required to lock her IV line. With my heart pounding out of my chest, adrenalin coursing through my body, and my hands vibrating, I powered through the process of disconnecting her IV line. Everything about what I was doing terrified me to my core. I was overwhelmed by the experience, so I made a post on Facebook to seek out support from my network to help me cope with what I was feeling. Within no time, the messages of love and support began pouring in, and I found myself feeling blessed to have such an amazing group of people by my side. Over the next 4 hours, I paced the house and sought out distractions from the panicky soft screaming in my mind. During that time, a couple of my friends periodically sent me funny memes and videos to help keep my mind clear. I also passed time by cleaning while I waited for the nurse to perform Olivia’s hourly blood sugar checks. At the 2 hr mark, her blood sugar began to drop, so we increased the frequency of her checks. When we checked her sugar before reconnecting her TPN, we were relieved to see that it was returning to normal. Day 1 was complete, and Olivia was stable, but we were not out of the woods yet. Day 2 was similar to day 1, except her blood sugar dropped even lower at the 2 hr mark than it had the previous day. I was scared and discouraged but continued to push forward anyway. Thankfully, by the end of the 4 hrs, her blood sugar returned to normal on its own. During her disconnect time on the 2nd day, Olivia had an appointment with her physiotherapist. Initially, I was worried that the exercise would negatively affect her blood sugar, but thankfully I was wrong. At the end of the second day, I started to wonder if what we were seeing was hyperinsulinemia (which is abnormally high levels of insulin that can cause hypoglycemia and other symptoms). We most likely witnessed it during our previous attempts at disconnecting her TPN because they always resulted in dangerously low blood sugar and a metabolic crisis. I was determined to do everything in my power to help Olivia succeed this time, so I started doing some research into how to help minimize or eliminate the symptoms of hyperinsulinemia (in case that is what we were seeing). The best answer I stumbled upon was exercise (according to healthline.com). They suggested a combination of light aerobic and resistance exercises, so I figured it couldn’t hurt to give it a go. In the days that followed, we kept Olivia upright and active for as much of those 4 hrs as possible, and it seemed to help. Her blood sugar stayed stable until Monday when it dipped down for a couple of hours before returning to normal. Unfortunately, Olivia caught another sinus cold while at preschool, and by Monday it was in full swing (which might explain why her blood sugar dipped again). Olivia’s cold continued to get worse over the following 24 hrs, but by Wed, we started to notice an improvement in her energy and mucus production. During her TPN break on Thursday, she had another low dip in her blood sugar, but that could have been caused by the fact that she was napping rather than exercising. Although she's not over her cold yet, she did wake up this morning feeling significantly better than yesterday.
(Click photo to see both images)
I had hoped to bring you all an update on Olivia much sooner than 10 days after my original post, but life tends to get in the way of progress sometimes. The first few days of this journey were terrifying, and I found it almost impossible to comprise a sentence, let alone a whole update. By the time our situation had settled down a bit, we became sucked into a flurry of activity and lost track of time. On Sunday, Olivia had her annual photo session with Santa, Monday she had an ECG and blood work appointment, and Wednesday she had a bladder and kidney ultrasound. So far all her test results have come back looking great, and it appears that she has managed to stay stable even though she’s sick. Once she gets over her cold, we should have a good idea of how her body will normally function during TPN breaks. If things go smoothly when she is not sick, then we could potentially entertain the idea of extending the length of her time off of TPN in the future. At this moment it’s hard to imagine a life without TPN, but we are once again feeling cautiously optimistic about how this part of our journey will go.
