September 5th Update

Today was a pretty good day. Annie's PICC line is failing to draw blood again, so our goal today was to get it working. Annie had a full chest x-ray so the vascular access team could see where the end of the line was in her body. From that, they determined how far they needed to adjust it. They ended up pulling it out 3cm, so the end of it is now near her arm pit inside her body. Once the line was secured in place, we tested it and it drew blood beautifully!

However, in order to prevent the PICC from clotting off again, Annie has to stop her TPN. The TPN she's been on the last week or so has contained all her complete nutrients and calories that she needs, going directly into her blood. However, since her line is clotting from it, they are switching her TPN to a less complete nutritional formulation that has a lower risk of clotting her line.

Because Annie's nutritional needs can no longer be met through IV access, we have had to start trying to feed her formula through her J tube a little sooner than we were planning. So today Annie started getting quarter-strength formula through the J tube directly into her intestines. We started really slowly at 10cc/hr but tonight she is up to 20cc/hr and doing really well with it. We only ever ran the pedialyte at 25cc/hr, so we'll soon be testing new limits as we increase her formula rate. Once we see she can tolerate a larger volume, we'll begin to increase the concentration of her formula until, hopefully, she can get back to her normal feeds of full-strength formula at a rate of 85cc/hr. Even if that's just through the J tube, she can go home on that, and then once home, we can try to transition her back to the G tube.

Because they had to take a chest x-ray to locate the tip of her PICC line, they were also able to look at Annie's lungs. We've been concerned about her aspiration on Monday night and feared that pneumonia might settle in, especially with her breathing troubles that developed afterwards. But thankfully, Annie's lungs look clear with no signs of pneumonia!

Today is day 8 of the IV bactrim for her pyelonephritis (day 11 in the hospital). They haven't decided yet if that will need to be a 10 day course or 14 day course. They will do another urine culture at day 10 to check and possibly extend to 14 days just to be safe.

Annie has been up in her wheelchair for longer periods of time yesterday and today and seems to enjoy it. I think she's really wanting to get back to school and experience her senior year! We're not out of the woods yet, but I'd say Annie has finally turned a corner!

We've had fun watching the construction workers build the outer walls on the new hospital extension outside our window today. But all their progress more clearly marks how long our stay here is becoming! Today Annie enjoyed watching Lexie play more video games and a visit from Grandma and Grandpa. We're so grateful for the extra help!