Saturday, November 13, 2010

Missing everyone tonight

My cousins Chris and Susan came to visit today.  They drove all the way from New Hampshire and Maine to support Ty, and I can't tell you how great it was to see them!  I am truly touched.  When they got to the hospital, Ty had just started feeling better after a severe headache episode.  I was so happy that he was doing okay because I wanted to spend some time with them, but of course we got whisked away for a CT scan right in the midst of their visit so it was cut short.  Regardless, Ty is still asking about them and playing with the toy dinosaurs they brought... it really brightened our day.   Thank you Chris and Sue!!

Uncle Harry and Aunt Theresa also stopped by and Uncle Harry decorated the wall in his room with a picture of the one and only Rocky Balboa.  Ty thinks it is soo cool.  He really is surrounded by so much love and support, he is one lucky little guy.

I was really hoping to get out tonight to see everyone who is coming out for the benefit in NYC, but Ty has taken a downturn so I had to stay with him here at the hospital.  He has been having bad headaches more and more frequently, and I want to be here for when that happens.  It's not fair that a little 3 year old boy should have so much pain.  I feel so helpless, but at least I can hold his hands and whisper in his ear how much I love him until he feels better.  I know that Lou will represent us well at the benefit :)  To those of you attending tonight, we love you to pieces and we can't thank you enough. 

Ty made Lou and I so proud today during his CT scan.  When he learned he was getting a scan, he got very fearful that it would require a needle (which it doesn't).  He was so scared, he asked me to cover up his hands so the doctors wouldn't be able to pull up his sleeves to give him any shots.  I put socks on his hands.  Then, Lou explained to him that he had to hold very still during the CT scan, and we never thought he would do it.  He has always been under anesthesia any other time, but this was an emergency because of the headache he had this afternoon and the docs wanted to get him in there ASAP to rule out any dangerous intracranial bleeds.  We expected him to totally freak out once he was placed on the table and under that huge machine - but he didn't!  He barely even cried!  He held still for the duration of the scan, and he amazed all of the doctors with how well he understood and adhered to their instructions. 

Afterward I was so upset with the neuro team because they decided to tap his VP shunt to get a sample of CSF fluid for cultures.  I understand being cautious and ruling out the possibility of another CSF infection or shunt infection, but I just wish it could have waited because as far as Ty understood, he thought that if he held still for the CT scan he wouldn't get any needles.  Then an hour later, in walks the doctor with a needle to poke through his scalp, followed by his daily G-shot to boost his white blood cells :(  I hate this so much. Ty is my hero. 

It's been an exhausting day.  For everyone who went to the Public House, I hope you had a drink for me!  I am throwing them back with you all in spirit :) 

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