Wednesday, September 19, 2007

Long time no blog

I have had a very rough time since Gabe's decompression surgery. I finally figured out that most of it had to do with me keeping my keepings bottled up. I don't want to post it over at caringbridge as that is suppose to be about the kids and not me. But I have been afraid to blog it here for fear that the EVIL ones will read it and send me more nasty emails about how I wanted this. But I need to blog this for my own good. If you do not like it. Then don't read it.

Emotionally I have been through the ringer. When Gabe had chemical meningitis and they told me that his CSF pressure was only 11 and he was so symptomatic of being high I lost it. I cried and cried and cried. I never cry. Tests, surgeries ect are matter of fact. To be completely honest with you the whiny parents in the waiting room drives me nuts. For the love of God people there are OTHER PEOPLES KIDS ones who are still WAITING to go back for their surgeries sitting out here. You are freaking them out. Suck it up. DEAL ALREADY! I felt like I was becoming a whiny parent.

I have continued to cry. Papilledema...I cried....Elevated pressure....I cried. I cry because he has pain. I cry because I am exhausted because rarely does he sleep. I cry because this just pisses me off and I can no longer even verbalize my frustrating.

The day that took the topper was when Gabe had his drain trial. That was his 17th time under general anesthesia. The dark thoughts drift into your head. Your kid goes under general one time....No biggie the odds are in your favor. Your kid goes under multiple times, you start to worry about when the odds will not be in your favor.

I got weepy when Amanda came in to get for surgery. I pulled myself together. We walked to the double red lines. That is such a long walk for such a short distance. He gave hugs and kisses and I love you's. Amanda had stopped at the desk to page the NS and I just walked passed her as she told me it would be okay. I must have freaked her out a bit as when I was trying to open the door to go to the waiting room (and then continue my flea to outside) I could not get the door open and she came back and grabbed my hands as I was trying to get the door opened and told me that I did not have to go out there yet. I just lost it. I composed myself the best that I could and we walked into the waiting room. Looking at all those parents who were there for their kids to get tubes in their ears or circumcisions I wanted to scream at them all. I wanted to run away. And so I did. I told Darren that I needed to go outside and get some fresh air. Darren knows I never leave until they call to tell me that surgery started and he was a little concerned. He talked to the receptionist and I headed to the elevators.

Down we went. I text messaged people to tell them that he was taken back for surgery. I talked to a lady from my moms work to give my mom the message and I hung up. We walked back into the lobby and I heard a Hey Guys! I did not at first recognize the person and it was Sheri Dr. Fr ims nurse. I said hi and just got all weepy again. Darren wanted to go and eat but I was not hungry and he did not want to leave me alone. I told him to go but if I saw or smelled food I would vomit.

It was just over an hour for his surgery and they called us back. We walked back there and saw the drain collection device and I wanted to run like hell. Run as far away as I can. I did not and we stayed in the recovery until they got his room ready.

It was a long 8 days in the hospital. It has been long weeks since his procedure. He now knows what it is like to have pain free days. And well he wants it back. He is none to happy that he has to wait. :(

I still have my days. It makes me so mad that he has to suffer. Let me try to explain here what the days are like when I try to describe them.

"Good Days"---Days when his pain will respond to medications and come from a 5 (on a 0-5 scale) to a 4. These are also the days when he can actually act like a little boy. The days he can run and play outside without crying within 5 minutes that he hurts and wants to go inside.

"Normal Days"---Days when his pain stays a 5. The meds may help his pain come from an intense 5 to a mild 5. And yes these are descriptions Gabe gives. These days our huge activity from him is playing on the computer. Maybe playing in the playroom for a few minutes.

"Bad Days"---Days when the meds dont touch the pain. Days when his biggest activity is getting off the couch to go to the bathroom or walk upstairs for meals. These days result in a lot of movie time. Lots of him sucking on his fingers.

"Horrid Days"---Days when he is in so much pain he screams at us. Pain meds dont work. He yells, screams, says mean things and does mean things. He is just pushing out of control. He hurts and does not understand why he has to hurt and others do not. These are the days he gets very frustrated and usually cries about wanting to be normal.

"Status Quo" means that we are having one of the 4 before mentioned days. Any of these days and vary over the course of a day and often do.

Well my friends. AS much as I would love to blog more. I must sleep. Speech therapy tomorrow for the boy....Great!

7 comments:

Amy L. said...

(((((((((((Hugs))))))))))) I'm so sorry that you all have to go through this. I'm praying that he gets relief that lasts!!!

The McMommy said...

Hugs for you. Hugs for Gabe.
So sad that he has to live like this. No 5 year old should ever have pain like that. I ma so sorry for everything he has been through. I wish I could say more than that, but I know there is nothing I can say to take away his pain. Just...HUGS

Wendy said...

((((Michelle))))) I am so sorry and think of you guys so often. I don't know of any words or advice to make your pain lessen. Just remember that you are not alone - there are alot of people who love and care about you guys. And do not beat on yourself for crying - you have every right to and it is better to get it out then to keep shoving it down deep.

If there is anything I can do for you, please let me.

Joanne said...

I wish there was something I could say or do to help you. When there is something going on and you can't fix it it takes its toll you you. You need to let it out. There are lots of us around who will just listen to you yell, scream, laugh or cry. Lots of prayers for all of you!

USANSAY said...

I can't believe anyone would tell you "you wanted this" - who would want this for their child?

For your own sanity, I think you do need to let it out every once in awhile. Even if YOUR every once in awhile is 3 times a day right now. Don't worry what others may think of you - you are his mother and you feel his pain and all you want to do is fix it.

{{{{{hugs}}}}}

Lynn said...

Hugs for you, and hugs for Gabe. Sometimes I never know what to say, but you guys are ALWAYS in our thoughts and prayers.

I hope his next surgery is his last for a very very very long time.

He is such a wonderful little man and deserves to be a kid and not in pain.

You are a wonderful Mommy and need to vent...

HUGS!!

Anonymous said...

Michelle,
I haven't been around checking in with you lately and after reading this I so wished I had made the time. I am sorry for your pain, for Gabe's pain an I continue to pray for a miracle cure.
Neither of you deserve this...
you are doing a fabulous job being his mom...
Continued prayers,
Tammy