Dearly Departed Drawings ~ Kole {day 344}

June 22, 2008

"Today is a pretty normal day so far, as far as normalcy goes these days. Kole wasn't into breakfast very much, he did eat some pancake with butter and syrup but wasn't into the bacon. He has been slightly more fussy than usual and a bit clingy to boot, we figure because he has been running a lowgrade fever since last evening. Maybe all the Care Bears videos I found for him down at the volunteer desk will help! Today we gave him a spongebath, which he wasn't really into, but I think he felt better afterward because he took a 2 hour nap (mommy's butt hurts a lot, I held him the whole time in a wooden rocking chair). Then we had some company (Greg and Deb, Larry and Carol), and he enjoyed beating all of us with the balloon they brought! He was laughing hysterically. Then he had a decent lunch, and we were interrupted by the echocardiogram people, which is what is going on now. He does not enjoy this. We don't have the results of the blood culture yet, but hope it is negative, we should know by this evening (takes 24 hours). Thank you so much for all of your prayers, today. The days of the week are all running together, but I believe today is Sunday and many many people will be praying during their church services, I am sure. I can't believe I have been here for 12 days now and haven't been home. But I will continue to stay by the side of my only son, the love of my life, sore butts or not. For those of you planning on visiting, I think we have plenty of visitors for today, but let me know if you have another day in mind that you would like to come up. His immunity is just so low, and we have to be really careful at this point. Of course, if you want to come and hang out with Kole's parents (wink wink) for a while, that would be just fine. My husband is actually having kind of a rough day today, and we realize we do need to get out and take care of ourselves sometimes. "


 June 23, 2008

"Kole's most recent echocardiogram showed not much has changed, although the fluid around the heart went from moderate to small again (good news!). It just seems to go up down up down. This is the reason for the rapid heartbeat, we think, not to mention that it beats faster when he has a fever, which he has had for the last 36 hours. Tylenol does bring it down. The blood cultures are still showing negative for bacteria, which is awesome, too, although it does take 72 hours for the complete process which will show if he is "growing" anything in there. Right now we are rejoicing in the fact that it is Monday and OUR oncologist is finally the one on call this week! Yay! We love her. She came in and spoke to me a few minutes ago. We have been pushing to get Kole's central line in his neck out. They originally put it in just as an impromptu/temporary thing when he got the biopsy done (because they wanted to kill two birds with one stone) but now it is two weeks later and this thing is red and irritated. Plus, when his blood culture did come back positive for bacteria last week, they found that one of the ports on this central line was the cause. Although they did administer the antibiotics, we just feel like this thing is the source of all the problems (fever, bacteria, infection). I was just told that they will be taking this out in the next couple hours, and putting in a temporary line in his arm, where they can administer whatever they need to, until the Broviac (permanent line) is put in, which is likely to be Monday, the doctor  said. She wants to see Kole's ANC levels come back up by Thursday, and she said when that happens, we can take him down to the playroom and just get out of the room in general. He will be stronger by the end of this week, and then we can finally have a good couple days over the weekend before the surgery Monday to put the Broviac in. Then I believe he will begin the next round of chemo promptly afterward, Monday night. The doctor visually looked Kole over and said she is pleased because it looks like, from the outside, the tumor has already been reduced! Although she did show some concern about his weight. She said just to push him to eat more often and offer more Pediasure, and if need be, they will put a feeding tube in so we can pack some pounds on little man. Anyways, I have to get back to the room. We got some visitors (who stayed outside but he went to be with him) and I am here at the computer so no one is with Kole right now and I hate the thought of that! God bless this beautiful day, the prayers across the lands are working! I must get back to my son!"