Day 28

Source:  Day 28    Tag:  cmv ivig
...Is over and done with. As the infamous Charlie Sheen has said, my Piper is most definitely "winning". And it's a beautiful thing to watch.

Pipers surgery this morning went smoothly. They removed the wonky double line and replaced it with a single lumen line. This time, instead of having it exit her body in the middle of her chest, they have it come out closer to her ribs...the surgeon made my day talking about how he prefers to place the line there because it will scar her less for when she is a teen wearing a bathing suit or a bride walking down the aisle. Any talk about my Piper growing up always makes me tear up... I ache for the possibility of a future. After returning from surgery and being given morphine there for the pain, Piper stayed awake for an hour then promptly fell back asleep. Once she began waking from her typical 2 hour nap she was given the benedryl for her IVIG which just made her all the more tired and back to sleep she went...totaling a 6 hour nap today. And she was still ready for bed at 10:00 tonight, as usual.

They have finished one of Pipers antibiotics and plan to end a second tomorrow. Her cyclosporine is being tolerated well and her fevers have stayed away. In a huge answer to prayer, Pipers CMV copies have dropped from 22,400 to 12,900 in one week. And just as wonderful, we discovered today that Pipers reaction to the CMV sensitive IVIG has lessened enough to have it given without those immune suppressing steroids. Tonight they are beginning slow rate ng feeds to help her body get the calories she needs but to allow her to wean even more from the tpn and lipids.

And now for the very best news today. Dr. Haight said that provided Piper continues on the path she is on, we will be discharging early next week sometime.

This. Made. My. Day.

So now we pray her body remains as strong as it is now and that we are indeed able to move on to the second stage of at the Ronald McDonald house where on the weekends we can live like a family, all four of us under one roof.