Sophie's World

10:37 PM I don't know how to begin this post, there is just so much to unload I doubt I'll be able to summarize it all. We're home--all of us--and we are so very, very thankful for that. Today has been an extremely difficult and emotional day, however.

To summarize briefly, Sophie did get her chest catheter removed today. Since it was a Friday, the operating room was booked solid. We went down at 11:00am, hopeful that this meant an earlier surgery than expected (12:30pm). Fortunately, after complaining all morning about being hungry and being thirsty (she could have no food after midnight and no liquids after 7am), Sophie dealt with the waiting by taking a nap. After about 2-2 1/2 hours waiting to go into the OR, Sophie and Susan were finally escorted in.

Susan and I went to get lunch and wait in Sophie's room. A while later, we got word that Sophie was awake and hysterical--begging for mom and dad. Only one of us was allowed in recovery, so Susan went in. While I was waiting in Sophie's room, the surgeon came in (finally) to say that all went well. While Sophie was raving in the recovery room, the doctors weren't sure whether she was in pain or not, but administered a very powerful pain reliever (Fentanyl) that is supposedly 80-100 times more powerful than morphine. As it turns out, Sophie was just freaked out because we were not there after we promised her we would be there, so it was just a little upsetting that rather than come get us, they went ahead and doped Sophie up even more.

That's not the worst part, though. The worst part came a while later when the PICC team--the people who installed the new catheter--came in to tell us that the line wasn't positioned correctly (it was running up her neck instead of down towards her heart). In order to correct this, we needed to remove the dressing (traumatic enough for Sophie, but all the moreso since this dressing is on her arm, which is already sensitive from all the poking and whatnot, and she's been on steroids all week, and still hasn't eaten much of anything). Once the dressing was removed, the team needed to "powerflush" Sophie's new line with a lot of saline to try and coax it down towards her heart. It was very, very, very upsetting to put Sophie through that. We had assumed that we were past any more trauma and pain in her treatment, but I guess we were mistaken. Once that was taken care of, Sophie got a chest x-ray to make sure that the line responded properly. It did, only now the line was getting too close to her heart (maybe going into her heart, but I might have mis-heard that). So now we needed to remove the dressing once again and slowly pull the line out manually enough to keep it away from her heart. More trauma, more tears, but we got through it. By far, that was the hardest part about today.

After some mix-ups with getting discharged and whether or not we needed to administer the IV antibiotics over 1 hour or 2 hours and how we were going to manage that at home, we finally left UNC some time this evening (I don't even remember what time). Susan went ahead and drove Sophie home while I had a prescription filled for Tylenol with Codeine. Sophie has complained about pain all afternoon, but it's hard to tell whether it is just sensitivity to the new thing in her arm or serious pain. Hopefully we'll hold off on that pain medicine until tomorrow. Sophie doesn't always respond well to some pain medications, so the last thing we want to see is for her to react badly to something that is supposed to help during the night.

I guess we're thankful to be home, after all of that, but it's been a heart-wrenching day and I am absolutely terrified that after all that has gone wrong, something else will happen--the PICC line will stop working or cause Sophie such discomfort that we won't be able to manage at home, or she will develop another fever, or there will be some other as-yet-unforseen problem. We're back to day-by-day, or even hour-by-hour. Although we're home, we're not settled.