WEDNESDAY, OCTOBER 6, 2010 9:04 PM, EDT
I am not sure who I was kidding..... I THOUGHT today was going to be a little better since we were in NYC and I could concentrate just on Grier and scans.... when I am in Charlotte it is CRAZY trying to balance everything plus this treatment plan so I was lookiing forward to just doing HOSPITAL stuff.... but that is still a lot---!
I got Grier out of school early again yesterday so we could make our 2pm arrival for our 3pm flight... The flight went well... they treated Grier like a king and we arrived in NYC around 5:30-- waited for a LONG time to get checked in... and hen dropped our bags and walked to the hospital to get our supplies for the week--- meds, instructions, etc.--- it was late 6:20--- but they were still there --- it saved us from a really early morning today- Grier and I went to his pizza spot, ran to Duane Reade for some things that I needed to replenish in "our Box that we leave in NYC" and then came back and went to the playroom for some ping=pong .
We slept later than we wold have if we were home.... 8ish and took our time his morning... no breakfast was eaten because he had to have his CT @ 10:20--- so he drank contrast instead-- all 12oz of it- He keep asking HOW much more??? He finally finished and we left for the hospital around 9:30--- he needed to have his port accessed and a check up from a NP--- We were there saying "hi" to nurses we haven't seen in a LONG time... and they called him back and all of a sudden I FORGOT I had not put "magic cream" on his port--- WHAAAT? so we had to wait another 20 minutes.... while the numbing cream did its magic! I was really out of this routine....after the port was accessed we went down to CT and checked in-- they said come back in 30 minutes so we went back to 9 to see if we could finish with them... waited... and he had his check up-- they asked me what we had been doing since we were last there... and I almost could not rememeber..... had to go all the way back to MAY and try to remember what dates he had chemo... went back down to 2 and waited a LONG time.... finally around 12:15 he had his CT-- and we left --- he wanted to go to Lester's so we walked 15 blocks--- shopped.... and then walked back to the hospital for the 2nd appointment.... his MIBG injection.... left again around 2:30-- got some lunch at Lenny's-- and went to the Ronald for a second... and left again and took a taxi to the West side -- we went to the Museum of Natural History-- met Liam, Ella, and Gretchen there.... and then went to visit with them for a little bit--It was not long enough --before we knew it -- it was 6:30-- Grier was tired... he ate dinner... got a second wind, played some BINGO--- and a quick game of ping-pong-- and now has crashed! WHAT was I thinking......? This has been more exhausting than being at home juggling all three--- And and the mental part of all this---
Tomorrow-- we have to be at the hospital at 8 for the MIBG scan-- the one I hate... 1 1/2 of staying still--- and me trying to not look at a screen that is all around me--- At 1:30-- he is scheduled for his BM--- SERIOUSLY??????? That means he can't eat until after that because he has anesthesia--- they said to come by after the MIBG to ee if there was a cancellation.... ugh... I hope--- I am so glad I decided not to book a flight home tomorrow---- it would have been really hard doing all that and packing, cleaning etc.....
enough for tonight---- tomorrow will be here before I know it and we will do this all over again.....
I can not believe I did not take too many pictures today--- none at the museum.... oh well---
I got Grier out of school early again yesterday so we could make our 2pm arrival for our 3pm flight... The flight went well... they treated Grier like a king and we arrived in NYC around 5:30-- waited for a LONG time to get checked in... and hen dropped our bags and walked to the hospital to get our supplies for the week--- meds, instructions, etc.--- it was late 6:20--- but they were still there --- it saved us from a really early morning today- Grier and I went to his pizza spot, ran to Duane Reade for some things that I needed to replenish in "our Box that we leave in NYC" and then came back and went to the playroom for some ping=pong .
We slept later than we wold have if we were home.... 8ish and took our time his morning... no breakfast was eaten because he had to have his CT @ 10:20--- so he drank contrast instead-- all 12oz of it- He keep asking HOW much more??? He finally finished and we left for the hospital around 9:30--- he needed to have his port accessed and a check up from a NP--- We were there saying "hi" to nurses we haven't seen in a LONG time... and they called him back and all of a sudden I FORGOT I had not put "magic cream" on his port--- WHAAAT? so we had to wait another 20 minutes.... while the numbing cream did its magic! I was really out of this routine....after the port was accessed we went down to CT and checked in-- they said come back in 30 minutes so we went back to 9 to see if we could finish with them... waited... and he had his check up-- they asked me what we had been doing since we were last there... and I almost could not rememeber..... had to go all the way back to MAY and try to remember what dates he had chemo... went back down to 2 and waited a LONG time.... finally around 12:15 he had his CT-- and we left --- he wanted to go to Lester's so we walked 15 blocks--- shopped.... and then walked back to the hospital for the 2nd appointment.... his MIBG injection.... left again around 2:30-- got some lunch at Lenny's-- and went to the Ronald for a second... and left again and took a taxi to the West side -- we went to the Museum of Natural History-- met Liam, Ella, and Gretchen there.... and then went to visit with them for a little bit--It was not long enough --before we knew it -- it was 6:30-- Grier was tired... he ate dinner... got a second wind, played some BINGO--- and a quick game of ping-pong-- and now has crashed! WHAT was I thinking......? This has been more exhausting than being at home juggling all three--- And and the mental part of all this---
Tomorrow-- we have to be at the hospital at 8 for the MIBG scan-- the one I hate... 1 1/2 of staying still--- and me trying to not look at a screen that is all around me--- At 1:30-- he is scheduled for his BM--- SERIOUSLY??????? That means he can't eat until after that because he has anesthesia--- they said to come by after the MIBG to ee if there was a cancellation.... ugh... I hope--- I am so glad I decided not to book a flight home tomorrow---- it would have been really hard doing all that and packing, cleaning etc.....
enough for tonight---- tomorrow will be here before I know it and we will do this all over again.....
I can not believe I did not take too many pictures today--- none at the museum.... oh well---
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