Lots of info...

Hello all,

Sorry for the delay in the update on Kennedy. I recevied a lot of information yesterday but was so overwhelmed that I just needed the time to get my head together. So here's what is going on now. First off, I love Kennedy's new doctor. She's a fellow, so there's someone above her, but she's going to be following Kenn for the most part. She spent over half an hour with me yesterday just answering my questions and getting to know Kennedy. While we are inpatient (I just realized that's only one letter off from impatient! hmmm) we have to see whichever doctor is up here for the week, but once we start following up in clinic we will see her. She told me that whenever I have any questions I can have her paged as well, which is what I did yesterday after the doctor I don't like came in AGAIN! She just confirmed my original feelings. I was so frustrated after she left that I had Anne paged and she promised only one more day with her and she would be off rotation. Thank GOD! I can feel my blood pressure rising again so I'm going to stop there. 

So let's see... Frank's cultures came back and he does have MRSA. I let Kennedy's nurses know and her doctor called infectious control to see what we need to do. Frank cannot come here until his sores are closed and completely healed. They said they would prefer he gets cleared by his doctor first as well. It would be HORRIBLE if any of the kids up here got MRSA and we are more than happy to keep him away! He did get to go home yesterday. They pulled the tube out of his lip (ouch) and sent him home with heavy duty antibiotics. He's going to stay away from Kass and Kam till he's better too... we don't need them sick either! Now on this end, if Kennedy gets any hint of a fever she will immediately be put on isolation. The nurses will have to wear gowns and gloves and masks when they come in and Kenn won't be allowed to leave her room. If that should happen I will need to call our pediatrician to see if it's ok to keep Keeghan here. If it's not ok then my mom and I will switch places until they make sure Kenn doesn't have MRSA. SO pray pray pray she doesn't get a fever!!!!

Kennedy is feeling ok for now. She had a lot of pain in her hands yesterday, it got so bad she started crying so I finally asked for some medicine to help her. They gave her tylenol which worked just fine. She kept her spirits up most of the day but there were times she would just lay down on her pillow and look at me like "This sucks!" Yeah... pretty much! She has kept a good appetite so far and is drinking well. We've taken her off the miralax for now after she had a major blow out last night. Keep praying that she doesn't get sick and that she keeps eating!!!

About Kennedy's chemo meds: Kennedy's new doctor (Dr. Prasad) said that Dr. Shankar presented Kennedy's case to the tumor board here at Vandy as well as contacting other children's hospitals and an expert in Down syndrome and Leukemia and they all agreed that it was too risky to do the Ara-C again. She said they didn't want to test Kennedy's limits and accidently push her too far where they can't fix it. I agree with that!!! They also said that should Kennedy ever relapse, they have the low dose of Ara-C to fall back on where they wouldn't have it if they use it now. So they are hoping the regimin she is on right now will get this cancer out of her system. 

She also said there is a 40-50 percent chance that Kennedy will need a bone marrow transplant in the future. Sometime next week the kids and Frank and I will all be tested to see if we are a match for Kennedy. We're still waiting on the report from Keeghan's cord blood as well. That won't tell us if he's a match though, it will just tell us that they got good cells from him... or something... so he'll have to be tested as well. I'll let you know as soon as we hear anything. 

Speaking of Keeghan, he has his upper GI at 1:15 today downstairs (how convenient!). They are going to be checking for reflux and prayerfully ruling out pyloric stenosis. The Zantac doesn't seem to be doing him a whole lot of good, so we'll see what they say... I'll update again when we hear about that as well. My mom and Kameron will be coming up to stay with Kennedy while I'm down with Keeghan. Kassidy is going to a friends house (with 7 year old triplet girls, how fun!!) so she'll be happy! 

I feel like I'm forgetting something, but I can't think of what that is! I guess I can always update again later if I remember. Don't forget to pray for Cody and his family!!!

I am thankful that Keeghan is sleeping. He can't eat until after his test and he's going to be so hungry!!!