A March of changes
March started with a bang (or at least a lot of screaming).
In the morning of the 5th, just before her nurse arrived, I discovered that Olivia’s G-tube balloon had failed. If it weren’t for her attachment device holding her button in place, then it would have come completely out. With the nurse’s help, we prepared the supplies and began the process of switching out her button. Even though Olivia has had multiple buttons replaced, it’s always an uncomfortable and upsetting experience for her. We did our best to comfort her as she screamed her way through the button change. When we finished, I picked up Olivia and gave her a big hug before cuddling her in my lap. Within no time, she calmed down and the trauma of what had happened melted away.
In the early evening of the 8th, we had a zoom appointment with her neuromuscular doctor. During that call, we discussed options to help her get proper posture when she stands. Her feet tended to roll outwards, and her big toe would point towards the sky (which interfered with her ability to stand comfortably). Her doctor suggested that we should get her fitted for AFO’s (Ankle Foot Orthoses). The plastic braces would provide her with the correction, support, and protection she needed to help her stand comfortably. We were excited and hopeful that the AFO’s would make a big difference for her, but unfortunately, we couldn’t get her first appointment booked until April.
At 1:15 pm on the 11th, Olivia had an ECG and Echocardiogram to check the placement of her Broviac line (because it appeared that her line was pulled slightly out of place). Thankfully everything looked great, and the doctor reassured us that her line was in the correct position.
On the 15th, we traded in Olivia’s small borrowed bath seat for a bigger and more comfortable one. Although her new bath seat is also on loan, it’s a long-term loan compared to her previous one (it’s also more adaptive for a growing child).
After Olivia’s morning blood work appointment at the hospital on the 22nd, we began the process of weaning her off of her probiotic supplement. Since Banatrol contains a prebiotic, her doctor felt that the probiotic supplement was no longer necessary. We had hoped that our order of Banatrol would arrive in the mail before our samples ran out, but unfortunately, it did not, and we ran out on the 23rd.
During the month, more than half of our nursing shifts were cancelled due to sick calls, so you can imagine our excitement when we found out that on the 23rd, and the 31st, we would be interviewing two new nurses. It seemed highly unlikely that both new nurses would bail on us, so we were starting to feel excited about the idea of having full nursing coverage again. On the 31st, we even managed to squeeze in the first training shift with the nurse we interviewed on the 23rd. Aside from the chaotic start and exhausting nurseless days, March turned out ok in the end. As the 31st came to an end, we could finally breathe a sigh of relief as we looked forward to what April might bring for our family.
