I just spoke to Diane and she said that Cody just woke up about noon. They started to run a different antibiotic yesterday. Vancomycin is one of the drugs that Cody has a problem taking. He gets what is called "red man's syndrome." His face would swell and turn bright red. Unfortunately it is a drug that covers a spectrum of things that the other antibiotics don't. So they decided to give it to him over a long period of time and they pre-medicated him for it. It's seems to have worked. He did not have a fever since yesterday afternoon. They had to watch him very carefully while giving it to him so they had to keep turning on the lights in the room last night. He also had to be pre-medicated for platelets this morning. I'm sure he is going to be grumpy today.
Cody's doctor finally got back yesterday. She is from Palestine and travels back there once a year. Unfortunately for us she left just 2 days after Cody was re diagnosed. Her name is Dr. Abu-Ghosh and she is an angel. They have a great group of doctors which you can read about here. Dr. Shad is the lead doctor of the group and she is one of the best ever. We feel truly blessed to have found this group.
I'll write more this evening when I get in.
Well I'm here and hanging out with Cody. I don't know how to start this. This is one of those times where I feel like I'm hitting rock bottom. I'm not sure if Diane is feeling much better. Cody is sleeping now after a knock down, drag out, melt down. I'm becoming increasingly concerned about Cody's mental state. He has had two very bad nights of no sleep or very little sleep. I'm not talking about him being grumpy, moody or even angry. I'm talking all out rage... I'm deeply concerned that he is going to hurt himself. These are sessions that we would see after he would wake up from sedation. Now it's so bad that if you say something that he doesn't like or if he has to repeat himself he has a total meltdown. I had to physically straddle his legs and hold his arms and hands so he wouldn't hurt himself. I really want to talk to his doctor tomorrow and voice my concerns. Another sad point to this whole thing is that Justin and Daniela had to see all of this. They must be so confused by all of this. I know that I am.
Cody has lost control of everything in his life. He is forced out of school, his home and his bed. He has to stay in a hospital room hooked up to an IV 24 hours a day. He is forced to take oral meds at all hours of the day and night. On top of all of that his feels like shit. He has parents that are forcing him to do things that he doesn't want to do. He doesn't understand that they are doing this for his own good. This is one of those times when writing in this blog helps me more than I could ever say.
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12 comments:
Mickey and Diane,
My heart aches for you. I remember Cody's rages after sedation and hate that all of you have to go through this again. It shouldn't have to be this way. You are so right... Cody has had everything taken away from him right now from school and soccer to being at home and learning how to do things for himself. Cody is older now and is trying to make sense of all these changes that have suddenly stormed your worlds again. Trust that you and Diane are doing the right thing. Assure Cody that it's okay to be angry but it is not okay for him to hurt himself or anybody else, remind him that he is a good boy and he didn't do anything wrong and that it isn't his fault that he is back at the hospital. I know you already know all of this. I wish I were there to help. Praying for health, healing and comfort for Cody; for strength, guidance and support for you and Diane and patience, courage and understanding for Daniella and Justin. I love you guys, please call if you need to.
Lori
I think that anger is something that all cancer patients deal with - the little ones just have a harder time expressing their anger in politically correct ways. You are doing all the right things including discussing with the doctor. We are praying for all of you. - Trish
Oh Mickey and Diane.....I can't imagine any of it is easy or makes sense half the time. If the rages are linked to the sedation at least be comforted that it's self-limiting and will go away once the need for sedation is over.
Good news that this fever episode seems to be resolved.
Hugs to all of you,
Dottie
Mickey,
Just a thought...Does Cody like any paricular type of music? Is he allowed to have it the room? Soothing music can do wonders for someone in an agitated state. Keep the faith. Good days are coming. My best to Diane, Justin Daniela (get well!) and Cody.
Eric W.
Hey guys,
Reading everyday what all of you are going through, put life in its place for me. It is so hard not to get caught up in your own life and think boy what problems will come next and it is to much to handle. Then I read Mickey's thoughts and fears and I think how in Gods name I would get through it. I want you guys to know that John and I think of you daily and wish there was something we could do. Just let us know.
Mickey, I feel stuck here wishing I could do more to help and encourage you. Know that you are doing the best for him. Definitely talk it over with the Docs. Hopefully, they can give you some perspective if they can't help with the issues. And if you need to talk to someone with a semblance of sanity, give me a call.
Kirk
Mickey, it is particularly hard at Cody's age to put any of this in perspective. He's too young to understand, yet old enough to question why he's going through all of this. I agree with Eric on the music outlet. If he gets to pick, it may offer at least temporary solace from time to time. He may get a kick out of earphones. Anything that gives him back some control and choice.
You and Diane are so strong and are doing all the right things. You are just feeling helpless. As parents, we always hate that. We, who are so far away wish we could help more. Just know you can always call or ask anything of us. Prayers and positive thoughts continue for a healthier 2008. G2G
I don't know what to say without crying. I'm sorry that you are all going through this. I am especially sad that Cody is going through this. It's times like this that really do test a person's faith in anything. But please don't lose faith. Keep it strong, if not for you, then for Cody. My heart goes out to all of you!
Poor Cody.
I agree 100% with what Trish said. He's brave and strong, but he's still a little human in that sick body. Anger is a natural response and it must hurt so much Mickey, for you and Diane to watch him deal with his own life.
My prayers are with you. Prayers for strength enough to carry Cody through his darkest moments. Prayers for strength enough to make it until tomorrow. Prayers for rest for all of you!
Kati
I can't even imagine how difficult this must be for you and Diane. I do believe that what everyone here has already stated is right. You and Diane are doing the everything correct. Cody and all of you are trying to find a way to deal with something no one should have to confront. And that isn't always easy or rosy. I know you all know this. Jonathan and I are thinking of you and praying for Cody and the entire family.
I am so sorry you have to go through all of this --(you I mean ALL of you).
My son had the melt downs too, but he was older--Dx at 9 yr old. He he was sure I could make them stop & was pretty mad I didn't.
He's almost 16 now & after reading your BLOG, apologized to me. . . .& its that I was his closest target. He said he meant to tell me a long time ago, but he hated having no say in anything.
That's why he insist we take band-aid's down to the hospital (everyother month or so); that way the kids have a choice of SOMETHING, even if its just a 'stupid band-aide'. (all kinds of kids band-aides--latex & non, etc)
Anyway; I think its the no choice thing that has him so mad. Quite frankly, it pisses me off to think/remember it.
As Brandon said, IT JUST SUCKS. (my insiteful 15 yr old) :o)
Brandon also asked if you have a CHILD LIFE SPECIALIST that you like at the hospital, more importantly, one Cody likes???? We had a great one for the first year & he helped out alot with the dealing of things, just him & Brandon. . . . he didn't like the "oncology" one, he preferred the one for the burn victims. They just got along awesome. He moved back to Philly with his family, but when he comes into town, he always makes sure to see Brandon & they email/IM often.
OH, crap-almost forgot, he's at 23 points for Cody, but I'm not sure how many are goals/vs assists. . . . I'll find out.
As for your other kids, I really recommend you look into a camp for them--they have camp for SIBLINGS of kids with cancer--almost if not free & it gives them a break from the cancer too.
I'm in MIchigan, we do Special Days 2x a yr; but there's a Montana camp--Brandon's gone 3 times--CAMP-Mak-A-Dream----there are a ton out there. . . .it might be really good for them too! I know we looked at on in Virginia or W. Vir. . . . .gives them their own special time & attention & NO cancer talk for a week! Just camp!
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