Day 4 - continued

The days are beginning to run together. Melissa and I have each lost track of days before in certain circumstances, but for Harper, I think it's her first experience. Yesterday (I think, though not positive) she realized she lost a day somewhere. It really freaked it out. I think it was partially because it reinforced for her we'd been here longer than she wanted. She periodically begs to go home. It's so hard to find ways to tell her no, when I'd love nothing more.

A friend brought us a calendar today. We're now checking off the days, and keeping a log of visitors. Thanks Betty.

We were originally scheduled for Harper's biopsy at 10am. That time came and went, and we sat, painfully, in the ICU, crowded in our little corner, surrounded by beeps, alarms, and the cries of our neighbor.

This is AFTER we waited all weekend for the biopsy. As I understand it, we had to wait because the radiologist wasn't "available" over the weekend. I'm actually strangely looking forward to confronting someone on this point... Though I was too numb by the situation at the time, now that I'm more settled with where we are and what we're going through, it makes me a little mad they didn't have a radiologist on call. We would be days ahead now if... But I can't dwell there.

After a realization of a miscommunication between the ICU and the radiology department (who had been sitting waiting for us, while we sat and waited for them) we got down to the procedure at about 12:30. This is after Harper had been "nothing by mouth" (NPO) since midnight and had nothing to drink since 6 AM.

We spent a little time standing with Harper in her bed in the hallway outside where the procedure would occur. Similar to the needle discussions, Harper was attempting to talk us out of the procedure. We finally got her to let them put the Versed in her IV, and she was out in less than a minute. I was quite dramatic, but it was good to see her go under, so we knew she would be out for the procedure.

We quickly ate lunch in the waiting room (thanks Adrienne and Paul for bringing us the salads) and had just finished when the radiologist came in to tell us the procedure went well (again, we waited 2 days for a 20 minute procedure... Grrr) and we rejoined her and headed back to our little slice of heaven.

After the anesthesia, Harper slept pretty much a full 4 hours. She woke up briefly when they came into do an ultrasound of her kidneys, but I wouldn't call it awake, as she doesn't remember it. I love Versed.

Around 3 we got the best news in several days - they would be moving us back up to the oncology floor. They felt the BP was controlled enough that we didn't need the ICU any longer. Praise The Lord, the first of what I hope to be many answered prayers.

So, we're back on 7, in the oncology unit, loving the quiet and the space. Harper dug in and ate about a pound of grapes (which we loved seeing). Her little belly, since there isn't as much room as usual anyways, because of the growths and swollen liver, was so full. First time we've seen her really eat in days.

Tomorrow. If we're lucky, we might get word on the initial pathology findings, which could help us know what this stuff is and then how to fight it.

If you don't know, Melissa is also keeping a "blog" of sorts on CaringBridge. The link is here if you'd like to read it and leave a note of encouragement for Harper.

Also, as I noted in an earlier post, we are also encouraging people to support the Kosair Children's Hospital here in Louisville. You can visit our fundraising site and sponsor The Incredible Harps here. I'll note also that the hospital did not in any way encourage us to do this. We realized that we are extremely blessed, and wanted to help support this wonderful facility so that others less fortunate can continue to receive great care as well.

Here's to tomorrow. Whatever comes, lets at least know what we're up against.

Oh, and here's a cute pic of Harper - from some time back.