Hello everyone,
I apologize that this update is almost a week overdue – it’s been very busy at the Gozola household! Now that I’m (Laura) almost 34 weeks pregnant, there’s more to do, less time to do it in, and I’m tired! Funny how that works…
Anyway, last Monday I got a call from my mother in law that Bianca’s line had come out. I wasn’t quite clear what that meant, so I dropped everything at work (and home) and quickly drove up to assess the situation. The fabulous news is that Bianca has continued to show more energy and overall improvement as a result of the PICC line, and being on a continuous stream of the milrinone medicine. The downside to this is she’s taking more risks, and being only 21 months old, that means walking away from her backpack (which holds the medicine bags and pumps) and pulling on the line at times. In this case, she was excited about going on a “tractor ride” with Grandpa, and as soon as she was out of Grandma’s arms, she took off towards Grandpa, not giving Grandma enough time to clear the line from the door handle (where it got hung up) and *pop* – the line broke right about at skin level. Don’t worry – this didn’t hurt Bianca at all… she was (heartbreakingly) THRILLED and all smiles to be untethered!
Through some initial texts with our fabulous home health care nurse, Molly, I quickly confirmed this was not something that could be fixed at home, so we were headed to the ER. Knowing that our Heart Clinic team has advised us previously to give them a heads up anytime something like this happens, I also called the Heart Clinic, and a little while later was exchanging phone calls and emails (with pictures of her arm, the broken line, etc) with Dr. Edens. Dr Edens helped take the edge off for Nick and I, since we initially understood that she was only allowed to be off milrinone for a couple hours; he explained that is the case with most IV meds, but for milrinone, it stays in her body for 6 hours, and it would take a couple days for its (positive) effects to wear off, so it wasn’t like her life was in immediate danger. Nick was done with work about this time, so he brought an overnight bag for Fiona so that Bianca, Nick and I could head down to Children’s ER.
We were in the ER for a couple of hours and initially, they told us they could move the PICC to her other arm, right there in the ER….then it got too late, and because the vascular access staff in the ER was only on until 7:30, which is when shift change happens, we were told we needed to be admitted. They got a new IV in her (which is always so awful… she has terribly tiny, twisty veins so they have to use ultrasound to place it… and it took a couple tries). She was off the milrinone for about four hours. The sad news was that the hospital was fairly full, so it took a while for them to determine what room to send us to.
They explained that the rooms outside of the ER aren’t set up the same as the ER, so her PICC line replacement procedure would have to be done in an operating room (OR). That first night, they said they hoped to get her into the OR on Tuesday afternoon, so she was not allowed to eat or drink anything past midnight. Tuesday was rough… like I mentioned earlier, she’s been doing a lot better, so she was hungry, and was still on Lasix (a diuretic), so she was thirsty. Nick and I tried everything we could to distract her from wanting even water (I had to hide my water and drink it behind a curtain), but of course there were lots of tears and frustrated tantrums. We finally learned about 2pm that it wasn’t going to happen on Tuesday, so she could eat/drink, but we were booked in an OR for noon on Wednesday.
Then on Wednesday, same thing… no food or water past the wee hours of the morning… except this time there was an emergency patient that needed the OR more urgently than Bianca, so we were pushed back. They finally prepped her and took her back to the OR around 3:30. The first time she had sedation for the PICC line, the anesthesiologist was thrilled that he only needed to give her a little nitrous oxide (gas) – which meant that she came out of it quickly, and we had our girl back right away. This time she needed a little bit more help, so she stayed back in recovery a bit longer, and then was still a bit out of it and woozy when they brought her back to us. Either way, the procedure went smoothly and the new line was in – so we just had to wait for the home health care team to hook up the pumps for her to go home! She wanted water right away and drank a bunch, but the nursing staff was worried about her throwing up after being under and having so much water, so that was a fun fight to have; she could have water, but only so much. To end the fun rollercoaster, there was some kind of incident at the hospital, code yellow, and the hospital was in lockdown and everyone was advised to stay away from doors or windows. No idea what happened, but either way – we were finally home and our exhausted little Bianca was in her own crib again about 8pm Wednesday night. Phew!
After two+ unplanned days in the hospital, we were back home and trying to hit the reset button to pick up where we left off. Unfortunately, the new PICC placement has the line coming out of the underside of her arm and up towards her armpit, rather than the old line which was kind of on top of her bicep and came out sideways/perpendicular from her body… this small change means the dressing has to be reinforced much more – information we learned after two additional home health care (late night) visits when the line was basically exposed to air. I think we have a handle on how to best set up/reinforce the dressing now, with Molly’s help, but we haven’t yet tackled a full-body bath – so far we’ve just been kind of giving her a sponge bath and washing her hair over the sink…wish us luck! Each night we’ve also been changing out a band-aid with bacitracin ointment over her old line location – fingers crossed it’s not an ugly scar. We did get to see them pull out the old line… not something we will be forgetting as parents any time soon!
As always, I’ll upload some pictures of Bianca’s recent adventures 🙂 so go check out the photo gallery!
On a positive note, Bianca’s Beats is planning some fantastic COTA fundraisers, taking the pandemic into consideration of course, like a virtual BINGO event and a craft sale/silent auction! At this point, we are looking for some volunteers if anybody is interested in lending some time to help plan/coordinate! Just email, text, or call Nick or myself.
Lastly, Nick and I are anxiously awaiting the arrival of baby boy Gozola, and one of the more important things we’re considering is hiring an au pair, who would start after I am done with maternity leave. Does anybody have any experience with this? It seems to us like this would be a safer option, culturally we like the idea, and it appears the cost would be about the same with more coverage than daycare for three kiddos. We have so many questions – if you know anyone that has done this, please let us know!
Thank you and we cannot say it often enough – we have the BEST community. Thank you, thank you, thank you!
Love,
Laura