September 1, 2008
"Everything is going well so far with Kole's chemo schedule this time around. No neurotoxicity (yay!), just a bit sleepier than usual. Longer naps, and cranky when he wakes up. He just ate a really good lunch for me and now he is taking a nappy, listening to one of Maureen's CDs. Very relaxing.
I had a gigantic surprise yesterday at the hospital. I was filling Kole's sippy cup with "chock" (chocolate milk), and I turned around and my husband was standing there in the room. I thought I was seeing his spirit or something at first, I had to laugh, but it was truly him in the flesh. He suffered through the nausea and got in the car and drove up here to see me on our anniversary. He just laid and snuggled with Kole most of the evening and tried to keep some food and drink down. He did pretty well, but had to leave when we went to bed, he was too uncomfortable and upon speaking to him today, I learned he spent the entire night vomiting until 8am this morning. Then he slept till noon and called me. He said he is going to call the family doctor to see if they are there today, then call me back. I haven't heard yet. When offices open up again tomorrow, he is going to call the doctor up here at Hershey to set up a visit to discuss the results of all these test results. He is supposed to go to work tonight at 6pm. If he can't make it in, and they give him a hard time once again about the doctor's notes, then I don't know what will happen. We have a few people telling us to get legal counsel, and I think that's what will come next.
The doctors came in this morning to tell me that, after Kole had negative cultures come back (which means they can stop the antibiotics) now another positive culture came back. What a roller coaster. They said two other bacterias were found this time, not the staph like before. What a roller coaster. It's possible that the specimens are just contaminated, they said. Great. Now we will continue antibiotics indefinitely and keep checking the blood. He said, worst case scenario, Kole will need IV antibiotics given at home for a few more days after discharge. I was happy he said that, and not "Well, it's just a few more days here in the hospital than we thought...." Whew. I am ready to go home. This is my favorite time of year, end of summer into autumn. The weather is perfect and I want to be able to take Kole out and enjoy the crunchy leaves!!!
I must get going, many more things to do before Kole wakes up. God bless you all and thank you until eternity. As Maureen sings on her CDs, your prayers for our family have certainly "stirred the healing waters."
September 2, 2008
"I initially thought I would be able to go home Wednesday evening, after Kole's chemo was finished. It now appears, though, that I will have to stay until Thursday. These blood cultures really have the docs baffled, and they just want to play it safe and keep us here to draw more blood before we leave. They are still trying to determine whether to keep him on the vanco (broad spectrum antibiotic) or replace it with something more specific to whats growing in the culture. We just have to wait a couple more days to see what's growing, and then decide on the best antibiotic to treat it. We are going to have home nurses come every day for a few days after we get home to give Kole his medicine through the broviac. Today was a great day for us. Kole ate and drank and played with the best of them and I had a fair amount of visitors to keep me sane.
After this round is over, we come back to the hospital for more chemo on the 15th. Then it's just one more "shot" of chemo before they do another scan to prepare for surgery. A pediatric surgeon by the name of Dr. Cilley will be among the surgeons resecting Kole's tumor. I have heard wonderful things about him. Just want to say thanks for keeping us in your prayers, gotta get back to the room. God bless."
September 3, 2008
"It now appears that there may be a chance we won't get outta here until Friday. One doc thinks it will be Thursday, but another thinks the labs won't be that fast. At least I know one of them is keeping it real. :) Kole finished his chemo for this week a couple of hours ago and now he is fast asleep and receiving a blood transfusion. He will get half a bag tonight, and then get another transfusion tomorrow with the other half. He has been so sleepy this evening, I really ran him around earlier to wear him out. He wore ME out. We got to pet Bobby the Newfoundland, a therapy dog that came in to see the kids. Kole loved it.
I had a bit of a breakdown earlier today and had to ask for some help. The chaplain came in and we talked and prayed and I did feel better. I knew it was building up all week, and it just released itself today. Thanks for the prayers you are keeping us in daily. It is really heartwarming, and is helping us through. I talked to my husband a little while ago and he is still struggling. I haven't eaten much all day so I am going out to get a bite and hopefully get to bed early. God bless"
Today I worked on the crib rails, darkening them. I also worked more on the wall hanging in the background as well as the crib pads, blankets, pillows. It felt really good today drawing. I have a new crystal, lithium quartz that I picked out for myself at Christmas and I really enjoy its company. I want to take it everywhere with me, except its kinda big and heavy. But very, very pretty and has amazing energy.
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