Home again, home again
After we were discharged from BC Children’s hospital on Dec 13th of 2019, we spent the next couple of days relaxing and getting settled back into our normal routines. It felt good to be home, but at the same time, we also felt a sense of unease due to the long period of time we had spent in the hospital. Little did we know that in 55 and a half hours, we would find ourselves back in the hospital. In typical Olivia fashion, she decided to get up to shenanigans on her birthday. As a result of that, we ended up spending the last 7hrs of her birthday in the emergency room.
Dec 16th, 2019: before PICC line insertion
Her birthday excitement actually started around 530am when we were startled awake by her IV pump alerting us that something was wrong. After some troubleshooting, we managed to temporarily solve the problem by changing the needle in her chest. We had a great day of cuddles, visits with friends and family, and then we finished off the evening with a family trip to Costco. We barely had time to settle back in at home before we heard that familiar angry beep of her IV pump at approximately 415pm. Hoping that it was a defective needle we had put in her chest earlier that morning, we proceeded to troubleshoot once again… only to find out that that wasn’t the case at all. Knowing that the problem was with her port, we decided to not torture her by putting another needle into her chest, and instead, we took her immediately to the emergency room. Her medical team spent several hours trying to save her port, however, we came to realize that it was no longer usable. They brought her up to PICU for a brief visit to put in a temporary IV line so we could keep her fluids balanced. When she was ready, they moved her to a room on the pediatric ward while she waited for her surgical appointments. On December 16th around 4 pm, Olivia had a temporary PICC line inserted to replace her IV line (which was not designed to be used for TPN). On the 17th, Santa came by the hospital for a visit, and while on the pediatric ward, he delivered teddy bears to all the children, including Olivia. Around 9 pm on the 18th, she had her second surgery to replace her IV port with a Broviac line (a semi-long term IV line). After her surgery, Olivia spent the night in PICU for observation.
Dec 18th, 2019: before her Broviac surgery
She spent the 19th recovering from her surgery, and after ensuring that the Broviac was working properly, they removed her PICC line the following morning. They ran more blood work in the morning of the 20th, and because everything looked great, they felt that Olivia was ready to go home. Olivia said goodbye to some of the staff on the pediatric ward, and by 245pm, we were on our way home. Thankfully during Oliva’s 5-day hospital visit, she stayed healthy and stable. We believe that this hospital visit went smoothly because we had implemented a new fluid protocol during her surgery and recovery time.
Dec 19th, 2019: day of rest at hospital
After they removed Olivia’s IVAD (IV port), they sent it to the lab to be analyzed, with the hopes that we might understand why it stopped working. We didn’t know what to expect, and the results we got were a little unsettling. When they cut open the IVAD, what they found was a large blood clot that filled the entire port. They described the clot as a material sludge composed of crystalline material (mostly calcium pyrophosphate (calcium salt) and red blood cells). Thankfully the clot was so massive that it couldn’t exit her port while it was in her body.
Dec 22nd, 2019: day 2 of being back home
That giant blood clot was a blessing in disguise. If it had never happened, we would still be poking a needle into Oliva’s chest once a week. Aside from her G-Tube replacement (which happens approximately once every 3 months), the worst pain we have to inflict upon her is peeling a sticker off of her chest once a week. Although she doesn’t like it, the experience is far less traumatizing for everyone involved. So….. thank you blood clot??
