Dante's Inferno: August 2006 Archives

Whatever word is equal to being past exhausted is what I am right now. I am just NOW getting back from picking Dante up from the hospital as he was discharged today...finally...I can't even see straight im so tired...

the reason this blog was started in the first place was because of Dante's previous hospitalization and trying to update everyone ina way that didnt include having to retell the same storie(s) over and over but let everyone know what was going on...

I saw dante twice today - when i first got in - and ran into one of the doctors as well. he informed me that the MRI and the MRA that were done last night both came back negative. He informed me however at that time that the plan was to do a spinal tap to also rule out any problems in that area. Unfortunately for dante that meant he could not eat anything until after they did the proceedure. When I saw him this morning he had a PICC line(i know im being clinical but im at work, bad habit)

I went to see him again in the afternoon around lunch time and he was doing ok he still had some discomfort and was more concerned about not having had anything to eat (he was hungry) we had no word at that time abotu when they were going to do the spinal. I got him a couple of movies to watch and i stayed for part of charlie and the chocolate factory and then i had to go back to the plantation before they came looking for me.

I have been calling hourly more or less to check on him - the last time i called he told me that the doctors had decided NOT to do the spinal because of the proximity to his tumor and the risk of the catecholamines infiltrating his spinal column - for those of you without medical terminology background lets just say that would be a VERY VERY BAD thing...

Instead they want to do some kind of CT scan and im sure with contrast - so when i spoke to him he was in the midst of ordering something to eat. No ETA on when they are going to do the CT scan but im sure that wont be that long a wait either.

As for me as long as i keep myself numb im ok - if i stay in "work" mode it doesnt allow me time to think about anything much i cant allow myself to think on any particular thing too much,. Think of the analogy of a closet door that you open slightly to peek in and realize that if you opened it a whole bunch of stuff would come bursting out and you would be buried under it thats about where i am right now.

haven't had any appetite today but i did pick my way through an omelette this morning. I can't afford to pass out right now and im already depleted since its that time of month.

Im headed back over to Sloan as soon as i clock out here dante asked me to bring him a subways sandwich which i will and then im going to go stay with him - havent decided if i will spend the night or not....i will see how hes doing and what he says...

Ok i got in last night from the gym and find out Dante had gone into the clinic because he was having more pain in his neck and actually left me a message saying that he was feeling a "cold wet pain" in his head and so he went into the clinic and they admitted him. Evidently once again no one thought to notify me which is why i didnt find out until i got home last night.

I got a call from my mother because she wanted to discuss travel arragenemnts for her coming back up here since now the lawyers are waiting on her to do the closing....after finding out dante was in the hospital i just couldn't talk and i didnt call but she called me...and demanded to know why i hadn't called her...i remember calling her an "evil woman" and saying dante's in the hospital before hanging up the phone...

I spoke to him briefly last night on the phone, I was going to turn around and go back to the hospital but he suggested i wait till the morning and just come over after i sign in at work ( i work across the street from his hospital) Appreantly he is being evaluated by the Neurology team to rule out aneurysms, the tumor spreading, or anything of that nature. They did an MRI and an MRA last night and when I got in this morning to see him the doctor told me those tests were negative..

He still has to go for a spinal tap at some point today..I haven't really said anything to anybody and I guess right now i just don't feel like talking much or having to tell this story over and over. I haven't said anything here at work and I doubt that I will because im tired of people looking at me with pity

Those parents over at the center are going to be up in arms since i was supposed to send out their order today and im not sure if i will get around to it and quite frankly right now i dont give a damn...

Days like today make me wonder if i will ever see a time in my life where im happy again....these days it doesnt feel like it and no place i go can i find peace of mind...

DAnte had another one of those "heart racing" episodes literally this morning....he knocked on my door and asked if he should call ems as his heart rate was at 135. I made him go lie down immediately and gave him something cool to drink....and retook his pressure lying down....at which point his heart rate started to subside....we both noted that he had just gone to the bathroom prior to all this so we are now wondering if its something related to the tumor....my nerves are frayed beyond belief...i HATE living like this....its taking all the good out of me and leaving me with fear and anxiety...

I just hate this...i hate this...then if i feel like shyt im supposed to just "snap" out of it...will someone PLEASE tell me how the hell you snap out of this???

i dont even know how im supposed to go to sleep tonight...my eyes are burning like there are tears there waiting to come out but they won't.....my nerves are shot to shyt....i was supposed to call my mother tonight but i don't feel like talking to her...

People just don't understand living like this....im to the point now where i have to really "brace" myself to come home at night not knowing what im going to find when i get home...

my nerves are just so bad right now....im not even going in the bedroom because im not going to be able to sleep...

ok i come in from the gym, and my son hits me with - he had to call ems and be rushed tot he hospital because his heart rate zoomed up to 170 for no reason...and they had to come get him and take him to downstate - they did ct scans of his chest and didnt see anything that would cause his heart rate to go up like that....additionally his blood pressure was actually normal... his heart rate eventually returned to normal...but we have no idea what caused it to go up like that in the first place(well its probably the tumor) but we dont know why?

After him explaining to me all this...and how they came and had to give him oxygen...i started to just go outside and sit on the curb and cry...instead of doing that i did go outside but i wound up calling a girlfriend just to talk about something else...because i didnt feel like falling apart - and still dont...

He's got to go to the doctor tomorrow...somehow im supposed to manage to be at work knowing all this....

God help me....it's just too much...

Ok this will be a good one as its in part response to something said to me by someone that begs for a response but it also is something I had been contemplating and considering for some time.

The pursuit of goals, and in fact the act of being "goal oriented". I would like to think that there is no better example of how much emphasis and how my idea of focus and goals are of importance but by looking at my son. From a very early age he was taught and shown as best as i could that in order for him to live a life where he would have MORE choices and more freedom to do the things that he wanted to do, to live the kind of life that would be more comfortable for him, that he had to hit the books in school, and go to college. Not that I drummed it in his head but it was imparted to him and whenever I got the opportunity to show him actual evidence of this being the case I did. I tried to expose him to professional people who had gone that route as well as expose him to situations and circumstances that would reinforce that.

The result is nothing short of stunning, because even having spent an entire summer in the hospital with a serious illness and even being very close to not being here at all, he never lost sight of his goals. To graduate high school and go on to college. It was what he used to focus on during the entire time he was in the hospital and even when he got out, he never relinquished his focus and did not doubt for one second and did not even speak any words of doubt into existence.

Even when everything around him appeared to be working against him he never lost sight of his goal. He NEVER EVER gave up. Never said, "Mom I can't do this..." NEVER. While there may have been times when he was in the hospital where the situations he was going through made him exasperated, angry even(the MSG insurance fiasco comes to mind) HE never ever gave up, and I as his mother never EVER stood in his way nor did anything in thought word, or deed to discourage him in any way.

Evidently something worked and as he prepares to go back to register for his second semester of classes at college. I know it is more of a testament to who HE is and is a walking, shinning, no BLINDING example of being goal oriented, being able to focus on those goals, and being completely unafraid of doing what is necessary to achieve them.
People have tried to credit me with what he has achieved so far in his life and I hear the phrase often "well it was a result of good parenting, you did this or that etc...."

My parenting was not so spectacular - i just love my child I loved him from the moment i felt him move inside me and every day i see him it grows. I don't feel like i did anything overly out of the way or anything that is like "well tell us how you did it "

I love my son with everything that is inside me, I am proud of his accomplishments because for me it is a testament to the wonderful person that i know him to be, NOT necessarily becaose of anything i did other than bring him into the world.

There are no words to express how completely angry and disgusted I am with myself tonight. Good thing because i dont have time to cry over the latest tidbit of news that my son actually called 911 and went to the emergency room today because he was having some pains...it sounds like a pinched nerve.....he's supposed to go to the doctor in the morning....im giving up my bed so he doesnt have to sleep on the air mattress....but that means i either sleep in a chair or don't sleep tonight....

I am so very very angry and disgusted with myself - there are no words.....