Thursday, October 23, 2008

Quite the long day.....

The day started with Cody getting up at 8:30 am. The first thing he said to me was that he wanted to go to school. Well that meant heading out there soon after. He really enjoys his time with the teacher. They have class in the waiting area that is adjacent to the elevator as you get off. If not one on one it's usually only two or three kids so they get special attention. Ann Marie is a very nice lady with a thick New York accent. She is very patient with the kids whom all have different needs. So I tell Cody I will give him 1 hour because he just finished his pre-meds and it takes that long before they can start the 3f8.

Around 10:00 I tell him it is time to go to his room. Without a fuss he runs out of the waiting area. I don't know why but he says that he likes going to his bed. I would expect quite the opposite. This leads me to believe that he doesn't remember everything that goes on in there. "I'm thankful for that." So we get started and he starts watching Scooby Doo. That works pretty well on keeping his mind occupied. Then the dance therapist comes in. Cody really loves when she spends time with him. They play with little toy animals, scarves, percussion instruments and listen to 'New Age ocean music.' :) She has the special ability to speak softly and let Cody take control of play time. He uses his imagination like kids do and she plays right along. It really helps him focus on something other than the pain. Well, he made it through the whole infusion of 3f8 like he usually does and even made it through the flush without any pain. As they were playing with the animals he asked her one of his 'drunk questions.' What I mean by 'drunk question' is it is one of those questions a drunk person would ask that no matter how you answer it you can't get it right. Well he kinda lost control for awhile after that and he said that he didn't want to play with the animals anymore. By now, the meds are really kicking in. Now he shifts his attention to Monopoly. This draws me into play time. I have found that when Cody is not going through 3f8 treatments he plays Monopoly like anybody else would. When he plays while getting his meds it is a completely different game. He tells you what properties you may or may not purchase. Cody is very good with money and numbers but while under the influence he does some very creating financing to say the least. Put it this way, if Cody grows up to work on Wall Street and dabbles in alcohol or drugs we will be in for a recession for sure... :) So we play the game and he actually eats for me while playing which really helped him I think. He was definitely feeling some pain because we had to stop 3 or 4 times so he could lie down. After a few hours the dance therapist says she has to leave and Cody gives her many kisses and hugs.

Now comes the waiting game. I get him to eat as much as I can. He needed two rescues so I was hoping that it would help him recover more quickly.
His MIBG injection was scheduled for 2:30 so we started to prepare to go down stairs at 2:00. He asked if he could go to the play room for a minute while I gathered the stuff up in the room. I asked if he felt OK and would be nice. He said "yes," and ran out of the room. I hurried because I wasn't so sure he was ready for the world quite yet. Or if the world was ready for Cody.... As I rounded the corner hallway heading to the play room I hear Cody cursing somebody out in the playroom. When I get there he is shouting at the top of his lungs for someone to stop looking at him. I knew it was too good to be true. Anyway, I tell him that we had to go get the injection and the whole trip down he was telling me that I was the worse father ever. I hear that so often that I'm starting to believe it... LOL... When we get down to Nuclear Medicine he leaves a path or open mouths along the way. He drops a couple of 'F' bombs and 'Triple asses' as he passes people. I just apologize and tell them that he is on medication and he can't help himself. After sitting in the waiting area for a few minutes having him kick me and telling me to shut up a lady came in and asked me if I wanted to sit in one of the side hallways. She knew what was going on and just wanted to make things easier for me. I accepted and picked Cody up heading out the door. He started laughing like we were playing a game. He was right on the edge of coming out of the high he was on. As we sat down in the hall he spotted a water fountain with little cups. He said he was thirsty and headed in that direction. My old Cody seemed to be back. He was blowing kisses to all the ladies as they walked by. It is funny to watch people when your child acts so loving and polite. They almost don't know how to act. It definitely puts a smile on their face.

Well we get the injection and head back upstairs. The injection is for the MIBG scan which is scheduled for today. We had to go wait upstairs for his MRI scan which was scheduled for 5:30. So we played more board games while we waited.

If any of you are familiar with the MRI it is a very loud, noisy and scary procedure which Cody has always had while under sedation. Well someone decided that he could do it without this time. I had no problem trying because he is doing every other scan without sedation now. So we get started. I had to put a gown on also while going in with him. The MRI machine is a huge magnet that can do major damage to any metal you have on or in you body. It will also erase any of your credit or atm cards. So you must leave all your personal items outside in a locker. The MRI guy puts Cody up on the table and lays a heavy pad on his tummy. It looked and felt like a lead blanket but I don't know for sure. I didn't ask. Then he strapped him down to the table and got ready to start. Cody didn't say a word and laid there nicely waiting to get started. The table rolls him into the machine which is a tube that is just big enough for Cody's shoulders to fit. Now I must say, I would have to keep my eyes closed on this one because I think it would make me a little uncomfortable. Cody seemed to have no problem. Then the process begins. The machine starts with a series of different tone horn sounds. It had a little timer on the front that I could read. It read 3 minutes and it counted down. I thought to myself "3 minutes, this will be a piece of cake for Cody." Well, that was just a small part of it. When the time elapsed it started at 3 again and began another sequence of loud tones. Then again and again. I knew it was only a matter of time before Cody would want out. I think it would've been OK if it weren't for the loud sounds. Well he was about 15 minutes into the procedure and Cody wanted out. I asked the guy on the other side of the glass how much longer it would be. He said "15 or 20 minutes." There was no way.. Cody began to protest and started to thrash about so I asked the guy to stop. This was just too much. I told Cody I was very proud of him for being so brave and that he did his best. Cody then said to me "I told you I needed my 'Magic Milky' Dad." His 'Magic Milky' is the sedation drug they use on him that is white and looks like milk. I told him I was sorry but we had to try. He agreed and we headed out to get dressed. We will have to reschedule the MRI for another time. I hope it is when we return next month but we will see.


At 7pm we headed back to the RMH just in time for dinner. A church group was putting on a party for the kids and they had a DJ. Cody was doing his best 'MC Hammer' impersonation. Everyone loves to see him dance. He really is pretty good. He doesn't seem to have the dreaded 'White Man's Disease." LOL

I'm waiting for a load of laundry to dry right now. I'm going to let him sleep as long as he wants because he doesn't have to be at the hospital until 11:00 for his MIBG. I will have to get the room clean and everything packed tonight because we will be pressed for time tomorrow. We might not be able to get back here in time to check out so I have to get things packed and ready to go tonight. We are both ready to go home... :)

Thanks for reading.....

7 comments:

Anonymous said...

LOL! I've never heard the term Triple Ass before. I'll have to use that next time I'm in traffic. I'm glad your trip went okay, given the bumps along the way. Cody is such a brave boy. I'll swing by the house before I leave.


Love ya,
Corie

Dottie O said...

Thanks for the insight into the treatment process. Glad you are packing and getting ready to go home. Travel safe and cling to what is good.


Dottie

Anonymous said...

Mickey, thanks for the update. Glad to hear that overall he did better yesterday. I know certain moments weren't good but it is part of the process. You and Diane are doing the everything right, in the best way you know possible.

Prayers coming your way.

Susan and Jonathan

Anonymous said...

Yep, as Corie mentioned, I'll add that new swear word combo into my vocabulary when needed for the bad drivers.... :-)

I'm glad yesterday went a bit better than the day before. Cody's a strong little man!

Hope you're hanging in there too, Mickey! We're all sending positive thoughts your way and Diane's way too...

Prayers continue,
ElizabethNYC

209Mike said...

Thanks for the updates. What a day. I want to laugh and cry at the same time. You gotta figure he probably handles this stuff better than any of us would.

Monica Cassier said...

I've been in Boston all week, so I logged on today to read how Cody was doing. First, you both are so darn brave, and you are so patient. Cody is such a little fighter. The "Triple Ass" thing had me laughing out loud!!! I know it's not supposed to be funny, but its his way of fighting back, so good for him.

Glad everything appears to be going well, prayers for you all...

monica

Anonymous said...

The ups and downs of all the treatments would leave anyone in a foul place. I might have to quintuplet "a", so I give Cody credit for only yelling a triple...
Ahh..Propofol. Nothing better for an MRI. Often referred to as "milk of amnesia". People ask me for take home bags...
Hard to believe they thought a child could lay still that long without sedation. It was a lead apron on him. They do it for xrays to protect the parts...May help kids to stay still in MRI.
You all continue to amaze and inspire. Positive thoughts and prayers continue for all of you!
G2G