« 8/22/06 9:00 PM | Main | 8/24/06 »


8:40 PM It is now no longer a question of if, but when Sophie's line will come out. We're still awaiting results from the blood culture, but Dr. Gold has said that the line is just going to have to be removed. It has outlasted its usefulness for her treatment and is now causing more problems than offering benefits. Depending on the type of bacteria that Sophie has swimming around in her bloodstream, the catheter may come out after seven days of IV antibiotics, or it may come out sooner (or it may come out later). We're in a holding pattern (in case that wasn't obvious). I'm guessing that we'll know more by tomorrow at this time.

Since there's not much choice in the matter and the line is going to come out, I think Susan and I are okay with that. We both would look so very forward to no line maintenance (saline and heparin flushes three times a week, cap changes twice a week), no more dressing changes (once a week and always somewhat traumatic) and on the upside, we're looking forward to regular bath time (no more worrying about getting the "tail" or the dressing wet in the tub) and even letting Sophie go swimming for the first time in two years.

Of course, there is the little matter of Sophie's remaining treatments. We're down to the last nine months. Nine more visits to the clinic for either spinal tap or spinal tap with other IV medicines. Sophie will need a peripheral (hand, most likely) IV put in temporarily for that, but they're very good at the clinic and use numbing cream to help with the stick. Sophie's coping mechanism for getting the "dizzy medicine" that they use for sedation is to have her blankie over her head while they administer it. I have already suggested to her that she can do the same thing for the IV stick. We'll see. Tomorrow, the doctors will do a practice run on Susan, so she will be able to tell Sophie (based on her own experience) whether it hurts and if it does hurt, if it hurts a lot. Maybe that'll help.

Meanwhile, Sophie is doing well. No fevers since yesterday afternoon, and that one was less than 100. She is definitely feeling the steroids this week, so it'll be a fun few days in the hospital with her! It was good having Elisabeth and Sophie together today. Although they drive each other crazy sometimes (which drives us crazy), they do love each other very much. I think it was especially good for Elisabeth to see that Sophie is as healthy as she is, she worries so much.


Oh my goodness! I guess I missed yesterday's updates, so when I started reading about the line coming out I was quite shocked. Given what you are saying, it seems good that the line is coming out. Between all of the work and aggravation that comes with having a line, and the increased risk of infection, if Sophie is able to handle the IV at the clinic that definitely seems to be the way to go. As you said, it will be kind of nice not to have to deal with a "tail", and for her to be able to go swimming again. Hope that the antibiotics do speedy work, and that you are able to get out of the hospital soon. Congratulations to Elizabeth on getting the teacher she wanted, and I hope she has a very good year :) Regards, Heidi

We're glad Sophie is in good spirits despite the looming hand IV. Susan's trial run is a great idea. Perhaps you could also give her a regular "treat" to look forward to, after the IV, rather than focusing on the IV itself. A little reward for being brave. If anyone deserves a reward, it's Sophie. That wee child gave me courage last year when I had skin cancer.
I know Elisabeth can't wait to use those new school supplies!
You're all in our hearts. Patti