Saturday

Today finds Myla--and us--continuing to adjust to the PIC line she had installed yesterday. Myla paused for a picture with Nana before nurses came to change the dressing around her new line. Here's the deal: Myla's line was placed in a less than ideal location. The base of the plastic part that feeds into her vein is stitched to her forearm, while the insertion point is located in her bicep. Here's a picture. If she bends her arm, then the insertion point is crammed further into her vein. Not only does this sound painful, but it seems that this has a higher chance of also introducing infection. We'll have to do some more thinking about this and talk with the medical staff. All I know is that this looks painful, and I certainly wouldn't want this in my arm. Anyway, here's what her PIC line looked with the new dressing and here's a splint we requested to keep Myla from being able to bend her arm. This looks workable for a few hours, but for a couple of months? Wow.

As far as we know, Myla's ANC is still zero.

I had a surprisingly emotional response as we stood in line for dinner last night at the Ronald McDonald House here at the hospital. The dinner was brought in by a family--not an uncommon event. This dinner, though, was also the one-year birthday party for a child who had recently passed away at Riley. I took a piece of the birthday cake for Melissa because I knew she could eat it in blissful ignorance up on the 5th floor, but I found this a difficult dessert to eat, no matter how you slice it. Happy birthday to Jack.

5:24 PM: Myla's heart rate has become low (70 beats per minute) and irregular after having the dressing for the PIC line changed. The medical team is looking into this now.

6:13 PM: Myla's heart rate is back up where it should be--in the 120 range per minute, but arm is bleeding where the PIC line goes in, so they are giving her some platelets to boost her ability to form blood clots. Her platelet count is currently 65--short for 65,000--so boosting her platelet count should help stop the bleeding. In the meantime, we've had the flexible splint replaced with one that can't bend as easily. The other one was slipping off, and this was going to be a losing proposition with Myla beginning to grow more curious about this new thing that was on her arm. After getting some good advice from one member of the medical staff, Melissa and I are strongly leaning toward having this PIC line taken out and a central line installed in Myla's chest once her ANC count gets strong enough.

8:55 PM: We've replaced the green splint with yet another one, but that is also bending too much. We are waiting on an x-ray machine to get to the room to check on the placement of this PIC line inside Myla. The end of the line basically runs into her heart, and there is concern that the line is affecting her heart rate somehow. This was presented as a risk present with the insertion procedure, but with Myla's heart rate going back down again, we have to consider this as a possible cause.

9:36 PM: The x-ray showed that the PIC line is inserted too far, and this is causing the irregular heart beat. So, we are waiting for doctors to come to the room to remove the stitches and readjust the line.

9:41 PM: The procedure just started. Myla was sound asleep, but...

9:51 PM: The procedure is done, and the PIC line was retracted by almost a full inch! Myla is still crying as they are cleaning the area and putting on the new dressing, and we're waiting on another x-ray to check the new positioning. We're exhausted, so I might not offer another update tonight. Thanks for your continued prayers. It's been a difficult few days, even after getting out of ICU.