Friday, October 3, 2008
AHHH!!!
Last night was horrible!!! This is even better than the lotion story!! So, last night I couldn't go to sleep and I was up doing work on my computer for the sorority and watching tv around 4am. I finally decided the doing work was not making me sleep it was just making me more awake, so I shut down the tv and my computer in hopes to force myself to go to sleep finally. I have a hospital like tray that can be wheeled over my bed so that I can work on the computer without having it on my lap and I can easily move it since it is on wheels. So I still had the laptop on my table with the cord hanging off the table where it was plugged in to keep the battery alive, but I pushed it back away from me. I pulled the blankets up and I looked back at the table and I saw a huge mouse climbing up the cord to my computer!!!!! He was about 1 inch from getting to the computer and onto my table!! It was sooo creepy, his little feet in the air trying to climb the cord, ahhhh! So I didn't scream (because I know that my mom would think I had popped a rod or something!) and I tried as best as I could to log roll out of the bed as fast as I could and I ran down the hall and woke everyone up! Then of course the mouse had gone and we couldn't find him so I had to sleep in another room because I was so freaked out!!! I couldn't believe that it was crawling up the cord while I was working on my computer and if I had not turned off the computer when I had it might have gotten in my bed!!! Hopefully they will go away so I can sleep in my room again!! :(
Thursday, October 2, 2008
NEW POST!
Ok, so I am horrible at updating this thing, so I feel bad for ragging on my mom about not posting because she's 100 times better at it than me! :) So recovery has had its ups and downs... The first two months I was really paranoid about messing up my back and nervous about doing things that could ruin the fusion or instrumentation placement. So, I haven't been doing much, mostly in the bed and maybe up for an hour or two a day. Also, I had pretty bad nausea and because of that I haven't really been able to eat much. The narcotics I'm on really help the pain, but they also cause lots of other not so great things! I'm probably 20 to 25 lbs lighter now, which is kind of scary!! I hope to gain the weight back so I don't look like I have an eating disorder! I really do want to eat, but my stomach does not want to cooperate.
On Sunday I left for New York for my 6 week checkup. I was so scared!! Being up only a few minutes a day and then knowing the next day I was going to have to be up and active for over 9 hours- I was sure I was not going to make it! I rode in my car to the airport, which wasn't that bad because I love my car. A wheelchair was waiting for me at the airport and I was taken through security and got patted down! They even scanned my pillow that I was using to pad the wheelchair, so I was glad they were so careful checking everything. I then got on the plane and sat for a while waiting to take off. By that time I was pretty tired and in some pretty bad pain too. But my mom helped by playing Phase 10 (a fun card game) with me to keep me occupied. When I got off the plane there was another wheelchair and we made our way outside to get a taxi. We got me into the taxi and took a short ride to the hotel right next to HSS.
One of my sorority sisters lives in the city because she's at NYU for grad school, so I called her and took a little rest for about an hour. I felt much better after resting in the bed for a bit so we decided to go meet Ashley (sorority sister) for dinner near her place which was actually only a few blocks away, so we got a cab up there and ate in this cute diner. Ashley had an operation as well so we were both going through the same thing with pain and meds and not wanting to move too much! It was great fun to meet up with her and see that she was ok. Hopefully next time we will both be healthy and be able to hit the town together! ;)
On Monday morning I got up and put in my contacts for the first time in ages! I got to Dr Boachie's office and took some xrays. I have 28 Mesa screws, 1 Natural Bridge cross connector, 2 PLIFs, and 4 rods inside me! I am a total K2M poster child now! :D The visit was really good because I was assured that everything is going well, the instrumentation is totally solid and is so straight! I have amazing correction, especially considering all the scar tissue! My kyphosis is reduced a lot as well, so I am really relieved to hear all that. I still have a lot of pain at the top of the construct like T1-2 area and at the bottom L5-S1 and in the middle on the right like T8ish area where they took out part of the ribs, but this is all to be expected and nothing out of the norm. We also went to see a pain management guy to work on my nausea and get me off the narcotics without major withdrawl. Hopefully I won't need the meds for that long. I am now supposed to be starting physical therapy, so I might need more pain killers for the beginning of that, but we'll see how it goes. I'm also supposed to wear a 1 cm lift in my left shoe because my illiac crests are slightly at an angle instead of being parallel to the floor. I think my right leg is a little longer than my left and I want to be straight while my fusion heals.
The biggest thing I learned from the trip was that I can do a LOT more than I have been doing and that I need to start being more active so my body gets more muscle tone and stamina so I can eventually return to my normal life! We had been up and around all day Monday, so by the time we got to the bus to get to Queens (we stayed with a family friend there) I was exhausted and in some intense pain. There were no benches at the bus stop we were at, so that didn't help either. We finally got on the bus and they didn't take the transfers we had and the fee was 5 bucks each, but it needed to be in quarters or dollar coins! Needless to say we didn't have 10 bucks in change, so this amazing woman had 5 dollar coins and she helped convince the driver to let me have the handicap rate (he griped that I didn't have an official card, but I'm like did you not see me hobble onto this bus in a huge back brace??). I talked to Estelle (the lady who helped us) the whole way to queens which really helped me keep my mind off the pain. She knew 2 people who had scoliosis fusion survey like mine and they have led great lives and have had lots of healthy kids. (Dr Boachie said I might even be able to do the epidural since my L3 - L5 levels are not fused. ) Estelle was going to the same stop as my mom and I so she even helped us off the bus.
My mom's friend Jimmy picked us up from the bus stop and took us to his place where I hung out on the couch for a while. They had some other guests at their house that had the cutest dog!! It was a maltese pomeranian mix and was the sweetest thing ever! A white little fur ball that would lick you to death! It was so fun playing with the dog and hanging out with everyone- I almost felt normal again! The next day my mom and I went to the airport and made our way home. When i got to the airport we got another wheelchair and I went through security again with the wand (which went off on my back!) and they wiped my shoes with some paper and put it in a machine. I was scared for a bit because I was wearing my crocs that I wear in the OR so who knows what's on them! But I got through and it took forever to get to the gate. I felt bad for the girl who had to wheel me to the gate because it was such a long way and the floor had these metal bars in it that she had to kind of lift me over them. It was hard work and then even at the gate there were 3 more really steep ramps we had to go down and then I had to walk up the stairs on this little prop plane. It was crazy. I got back to DC and I got wheeled around all the planes and luggage carriers to this elevator that took me up to the right level. We had a friend from church, Mr Brown, come and pick us up to take us back to Stafford and he also talked with us the whole way home so I was not concentrating on my pain.
So everything is better! Now that I'm up at a table eating and not laying down I think it helps the nausea. It's also good to get outside and get some fresh air. I have some visitors coming that I'm excited about! Giselle is coming on Saturday and Michelle on Sunday and Jessie on Wednesday I think, so that will be really fun!! Anyone who wants to visit just let me know when! :)
And thanks for everyone for their well wishes on facebook and email! I am trying to be on top of writing to everyone and finishing my email, but it gets a little crazy, so don't be offended if I don't write back right away! I really appreciate everyone's support because it is really helping me get through all of this! I have been really forgetful recently, so hopefully that's the meds and not a permanent thing!! I do eventually want to go back to work and remember things! :D My next doctors appointment is in 4 months, so I still have a while to go before I'm well enough to go back to my normal life! oh well, let's hope it goes by quickly!
On Sunday I left for New York for my 6 week checkup. I was so scared!! Being up only a few minutes a day and then knowing the next day I was going to have to be up and active for over 9 hours- I was sure I was not going to make it! I rode in my car to the airport, which wasn't that bad because I love my car. A wheelchair was waiting for me at the airport and I was taken through security and got patted down! They even scanned my pillow that I was using to pad the wheelchair, so I was glad they were so careful checking everything. I then got on the plane and sat for a while waiting to take off. By that time I was pretty tired and in some pretty bad pain too. But my mom helped by playing Phase 10 (a fun card game) with me to keep me occupied. When I got off the plane there was another wheelchair and we made our way outside to get a taxi. We got me into the taxi and took a short ride to the hotel right next to HSS.
One of my sorority sisters lives in the city because she's at NYU for grad school, so I called her and took a little rest for about an hour. I felt much better after resting in the bed for a bit so we decided to go meet Ashley (sorority sister) for dinner near her place which was actually only a few blocks away, so we got a cab up there and ate in this cute diner. Ashley had an operation as well so we were both going through the same thing with pain and meds and not wanting to move too much! It was great fun to meet up with her and see that she was ok. Hopefully next time we will both be healthy and be able to hit the town together! ;)
On Monday morning I got up and put in my contacts for the first time in ages! I got to Dr Boachie's office and took some xrays. I have 28 Mesa screws, 1 Natural Bridge cross connector, 2 PLIFs, and 4 rods inside me! I am a total K2M poster child now! :D The visit was really good because I was assured that everything is going well, the instrumentation is totally solid and is so straight! I have amazing correction, especially considering all the scar tissue! My kyphosis is reduced a lot as well, so I am really relieved to hear all that. I still have a lot of pain at the top of the construct like T1-2 area and at the bottom L5-S1 and in the middle on the right like T8ish area where they took out part of the ribs, but this is all to be expected and nothing out of the norm. We also went to see a pain management guy to work on my nausea and get me off the narcotics without major withdrawl. Hopefully I won't need the meds for that long. I am now supposed to be starting physical therapy, so I might need more pain killers for the beginning of that, but we'll see how it goes. I'm also supposed to wear a 1 cm lift in my left shoe because my illiac crests are slightly at an angle instead of being parallel to the floor. I think my right leg is a little longer than my left and I want to be straight while my fusion heals.
The biggest thing I learned from the trip was that I can do a LOT more than I have been doing and that I need to start being more active so my body gets more muscle tone and stamina so I can eventually return to my normal life! We had been up and around all day Monday, so by the time we got to the bus to get to Queens (we stayed with a family friend there) I was exhausted and in some intense pain. There were no benches at the bus stop we were at, so that didn't help either. We finally got on the bus and they didn't take the transfers we had and the fee was 5 bucks each, but it needed to be in quarters or dollar coins! Needless to say we didn't have 10 bucks in change, so this amazing woman had 5 dollar coins and she helped convince the driver to let me have the handicap rate (he griped that I didn't have an official card, but I'm like did you not see me hobble onto this bus in a huge back brace??). I talked to Estelle (the lady who helped us) the whole way to queens which really helped me keep my mind off the pain. She knew 2 people who had scoliosis fusion survey like mine and they have led great lives and have had lots of healthy kids. (Dr Boachie said I might even be able to do the epidural since my L3 - L5 levels are not fused. ) Estelle was going to the same stop as my mom and I so she even helped us off the bus.
My mom's friend Jimmy picked us up from the bus stop and took us to his place where I hung out on the couch for a while. They had some other guests at their house that had the cutest dog!! It was a maltese pomeranian mix and was the sweetest thing ever! A white little fur ball that would lick you to death! It was so fun playing with the dog and hanging out with everyone- I almost felt normal again! The next day my mom and I went to the airport and made our way home. When i got to the airport we got another wheelchair and I went through security again with the wand (which went off on my back!) and they wiped my shoes with some paper and put it in a machine. I was scared for a bit because I was wearing my crocs that I wear in the OR so who knows what's on them! But I got through and it took forever to get to the gate. I felt bad for the girl who had to wheel me to the gate because it was such a long way and the floor had these metal bars in it that she had to kind of lift me over them. It was hard work and then even at the gate there were 3 more really steep ramps we had to go down and then I had to walk up the stairs on this little prop plane. It was crazy. I got back to DC and I got wheeled around all the planes and luggage carriers to this elevator that took me up to the right level. We had a friend from church, Mr Brown, come and pick us up to take us back to Stafford and he also talked with us the whole way home so I was not concentrating on my pain.
So everything is better! Now that I'm up at a table eating and not laying down I think it helps the nausea. It's also good to get outside and get some fresh air. I have some visitors coming that I'm excited about! Giselle is coming on Saturday and Michelle on Sunday and Jessie on Wednesday I think, so that will be really fun!! Anyone who wants to visit just let me know when! :)
And thanks for everyone for their well wishes on facebook and email! I am trying to be on top of writing to everyone and finishing my email, but it gets a little crazy, so don't be offended if I don't write back right away! I really appreciate everyone's support because it is really helping me get through all of this! I have been really forgetful recently, so hopefully that's the meds and not a permanent thing!! I do eventually want to go back to work and remember things! :D My next doctors appointment is in 4 months, so I still have a while to go before I'm well enough to go back to my normal life! oh well, let's hope it goes by quickly!
Thursday, August 21, 2008
Recovery
Recovery is going well! I still have some pretty big problems with pain management, but today was a good day. It's a crazy roller coaster of pain which is really frustrating. Sometimes I'll just wake up in horrible pain and I can't do anything to get comfortable and I try to just go to sleep most of the day to get away from the pain. In the same day as pain rated a 6, I could have pain at a 2! I mean I don't expect that there will be no pain, but I do expect to not be in severe pain especially when I'm on so many drugs! I'm also trying to slowly get off the drugs as well so that I don't become dependent, but sometimes it's just too painful to be brave and try to go without the meds. Anyways, I think it might be getting a little better and I can definitely move much more easily. I still need hepl to get up out of the bed, but once i'm sitting on the bed I can get up and walk around and sit in chairs and am fairly mobile.
(Finally a picture where I look put together!)
This past Sunday I had my first visitor! Adam drove down and spent lots of time with me! It was good to see someone else besides my parents :) I had a pretty good pain day that day so that was good because I was able to talk and not be so out of it on meds!
(Finally a picture where I look put together!)My room is pretty nice! I rented a hospital bed so that is a great advantage!! I am entertained by my big HD tv of course, but also have a bird feeder outside my window and I have been learning what birds come to my window. They are soo cute!! Today my dad just put up a humming bird feeder because we've seen a few around the regular bird seed feeder, so hopefully we'll get even more birds. We also got a bird bath today that hopefully I'll be able to see the birds in the water as well! We also have a woodchuck that comes out and visits every once in a while and is sooo cute!
Leigh and Ryan came on Tuesday and visited for a bit and got me tons of great things! I got reeces peanut butter cups (mmm), surfer magazine, legos, a book about girl power, an eye cover that smelled sooo good, and a tamagotchi (blast from the past!!) so that was awesome!! I finished my legos so far and have been reading and enjoying all the things in the care package :) Since then I think my pain has been getting worse, so even though I'm ready for visitors, I'm going to try to space them out so I don't get tired and I don't get my pain at a higher level because I'm not much good for anything when I'm in a lot of pain!
Ok, I think that's enough pictures and bloging for one day! ttyl :)
Sightseeing in NY and other pre-op photos
Ok, now i'm posting some pictures and catching up from before when mom was posting. Mom and I went around NY and had a crazy whirlwind day starting at the end of the island to see the statue of liberty and walking all day practically seeing everything! 
We saw the flatiron building...
(my grandmother worked there apparently which I never knew and never even noticed the building with all the times I've been to that area of NYC!) and I got two good pictures of it.
After that we went to chinatown and little italy, but I didn't take pictures there.
The next day my cousin Anne came and we had fun walking around the city, first through central park...
We went to the Museum of Natural History and saw this big statue of the pacific people section of the museum. 
We saw the flatiron building...(my grandmother worked there apparently which I never knew and never even noticed the building with all the times I've been to that area of NYC!) and I got two good pictures of it.Then we were in a great position to look at the empire state building too!
After that we went to chinatown and little italy, but I didn't take pictures there.A few days later we saw a broadway show, Legally Blonde! I felt so weird picking that over something like A Chorus Line or something more traditional Broadway, but I did watch most of the MTV show where the lead part of the broadway show was a competition between lots of different girls all trying to be the best Elle Woods. The girl that I was rooting for on the show won, so I did want to see it, so we went! It was soo good!! There were two live dogs in the show and they were so well trained and the singing was wonderful, so I'm glad I went! I got a picture of myself in front of the huge picture of the star of the show...
Mom took a picture of the doors of some music store that was near times square because they were really cool looking...
The next day my cousin Anne came and we had fun walking around the city, first through central park...We went to the Museum of Natural History and saw this big statue of the pacific people section of the museum. The statue reminded me of Michelle...it was in some movie we watched I think, anyways, I thought it was cool!
We also took a picture near the totum polls (spelling?) which were amazing! There were so many of them and they were so tall!!
Then the next day was my surgery day and I got to the hospital way early in the morning and took pictures just like my last surgeries with my cousin and my mom by my bed, helping me keep calm before they started the painful things like IVs.
But everyone was very nice and I was comfortable before my surgery. The last thing I remember is being wheeled into the OR and I was put on some other table and I was introduced the the OR staff (scrub tech, circulating nurse, etc) and then I was out!! :)
During my surgery my mom took pictures of Mike with a Range picture, Gracie in the waiting room when a huge bird landed on the window right next to her, and then after the surgery we got a picture of my mom, Dr Boachie, and my cousin Anne. 
Several days after the surgery when I was in my room and I was getting better at walking around and sitting in a chair my mom paid for a really nice guy to do my hair (since I couldn't get by back wet at that point so I couldn't wash my hair!) and it was awesome! It made me feel so much better and he was able to do the washing part in my bed! He had this plastic cloth that he put down under my head which then funneled into a big basin for the runoff of water and then I sat in a chair for the style. He was a very small guy (in the picture i'm sitting and he's standing!) and he sung itallian songs while doing my hair and styling it! It was very cute and made me feel so much better!
My last picture for this blog is when Betty visited. Betty is Dr Boachie's nurse and she is so nice!! She came and visited all the time and made sure I had everything I needed and I was doing well! I can't remember when this was taken, but I still look pretty busted! I can't believe how many pictures I put up here where I look totally busted with my glasses and crazy marks on my face from the cap on my head and the tape on my cheeks to hold the tube down my throat in place. I had lots of "war wounds" from this one! :)
Thursday, August 14, 2008
We're here in VA!
Aug. 14, 7 AM
Yesterday was a challenge, but we are here now. Catherine was a trooper through the whole thing. If I never travel on Amtrak again, it will be too soon. I want to tell you the whole story, but honestly am not sure I'm ready to re-live it yet! Suffice it to say, by the time we got into Penn Station in NYC, I was practically in tears! OK, here goes!...
I called Amtrak the night before to make our reservations....I upgraded to First Class because those seats were supposed to be better, and I was also assured that a red cap would be waiting for us with a wheelchair if I went in and told them our reservation number......I also called a car service, and they were to drive us to the "handicapped accessible" entrance to Penn Station....
So, first the orderly wheels her down to the car, and then we find that we can barely fit her into the car, since she is taller than before, and can't bend over, so he practically stuffs her head into the car to get her in ! The car ride, was pretty excruciating for her....Between bumps in the road, rush hour traffic, and the fact that we forgot to take her brace OFF while she was in the car, so it was poking her the whole time.....etc. etc. The driver was really nice and concerned, and asked if he should drive even slower, but we said no....at that point we just wanted to get there, and you really can't drive "slower" in NY because all the drivers are crazy, and if you leave literally (I am not exaggerating) more than 2 inches between you and the car in front of you, another driver will force his way into that space! The roads in NY haven't been patched in 100 years, I think....they were awfully bumpy, and she was gripping my hand like anything, so I know she was more than uncomfortable.....Also, we forgot to take her brace off, so that was jabbing into her the whole time....well, I wrestled the brace half off after some of the trip....The traffic was awful, so it took almost an hour to get there....I had stupidly put the bag with her pain meds in the trunk, thinking we would be there in 15 mins....so, at a red light, I asked the driver to pop the trunk, and I got out and got her meds and a ginger ale I had taken from the hospital with me (thank Goodness I had) Without realizing, I slammed the trunk so it would close the first time, and even that was painful to her..... So, finally we reach Penn Station, and I hop out and ask where you call for the redcap....I am directed to this little (un-manned)booth, on the outside of the building with a call button.....I called, gave my name and reservation number, and ask for the redcap, and she says to me, "where are you?" (I'm wherever this call button is located, you idiot!) So, I try to tell her where I think I am, and she says, "OK, I'll send somebody" So, I am thinking someone is on the way......Long story short....I keep calling and calling, and going back to the car, and I'm getting more and more freaked out, and there is no red cap in sight! I call and say, "Please, my daughter is in pain, please send a redcap" and all I get is, "OK" or "he's coming" After like 20 minutes of calling on a call button, and getting a person saying, "He's coming...", I call again, and get....no answer! (they knew it was me, so they just didn't answer!) I just pressed again, and I lit into whoever it was on the other end...."I paid $600 for these stupid tickets and I was told a redcap would be here, and blah, blah, blah.....(I have no idea what I said, but I was NOT happy" At least the person I got this time was more coherent than the others....(maybe they got their supervisor to answer), and she explained that there is no redcap assigned to me..they just call and the "next available" one comes......Well, at least that made some sense to me now, instead of just "OK", but that was definitely NOT what I was told on the phone the night before when I specifically made "handicapped reservations"......So I went back to the car, which the driver was kindly talking to Catherine, and running the a/c for her, and explained the situation. So Catherine finally said, "Let me try to walk it"....I had no idea how far it was, but it was like 3:30 by this time, and our train left at 4, (last available train for the evening), so I said ok....the driver was like, "Are you sure??" So we said yes, and he helped Catherine out to her feet, and me with the bags, etc. OH--insert here.....Catherine's dad came up this AM and got the bulk of our luggage to take home in the car....THANK GOD....because this way, all I was carrying was bags full of pillows to stuff around her, her pills, and other things she needed for the trip... I NEVER would have made it with that stupid 50 lb. rolling suitcase I started the trip with.....
OK, so next disaster....where we had pulled up was an odd place....it had these large cement planters all over, which helped to sort of block off an area like a small "official" parking lot, where there were a few Penn Station trucks and cars parked....there was also a long covered taxi line, a ramp that led into the station, and another area that looked like a parking garage, (it went underground) but it also was official....the Pepsi truck that fills the vending machines, etc. was in there......So, just around the time that we are deciding whether or not to get Catherine out of the car or what (she's not supposed to stay in one position for too long, and at this point she's been stuffed in this car for like an hour and a quarter) this blind man comes along with a cane, and he is getting himself all tangled up in the cement planters....he is really close to our car....I overheard him ask some young ladies what street he was on...but after they talked to him, he was still not making progress down the street, but just avoiding the oddly placed cement planter/obstacles, going around in circles.....So we decide to take Catherine out of the car, so the driver and I get out of the car. The driver goes up to the blind man and very politely tries to explain to him where he is, and how to get out, and they guy starts saying, "I don't need your help! Blah, blah, blah..."--very nasty to my driver.....So the poor man just turns back to me and we shrug our shoulders at each other, and we proceed to get Catherine out of the car.....In the process, this blind guy gets circled around again, and starts whishing his cane precariously close to Catherine, as I'm trying to get the bags, etc....there is no wheelchair in sight.....So I say to the man, something like "Please go to the left, I have another handicapped person here, and I don't want you to hit her, she just had surgery...."or something like that...so he says (in a psuedo-friendly voice) "Another handicapped person??? Who's the other handicapped person?" So I say, "My daughter" So then he says, "But who's the other handicapped person?" He keeps following us, and saying it again and again, so I say, "Look, sir, I'm sorry if I insulted you, I just need to keep people away from bumping into my daughter" and he's like "Insulting me? Who's insulted? I just want to know who the other handicapped person is." Oh my God, it was a nightmare! Catherine was like, "Mom, just stop talking and keep moving!" So, we finally got away from him....we're walking toward the station, no redcap in sight.....the walk was long, but people were very nice to us, trying to tell us what elevator to take, etc. We get into the station proper, and we're looking for where Amtrak is, as opposed to the million other options in the station...Long Island RR, etc......then we're trying to find the waiting room....a lady ran ahead for me and told me I was going the right way, and finally we got put in a waiting room, handicapped seating area (even though it said you had to show your tickets to get in the waiting room, they let us through, (I think they could see I was beside myself at this point) The first thing I see in the waiting room is a redcap and a wheelchair, so I said, "We have been waiting outside, and I have been calling for the last half hour for a redcap with a wheelchair"....(no big response from said redcap......) So, they let me go out of the waiting room, and leave Catherine there, to go to the machine to pick up my pre-paid tickets, which I did, and then I bring them back in.....all of a sudden, "OH....you're FIRST CLASS????.....Let me take care of you, you're not supposed to be in this waiting room....I'll take care of you..."
(now that they think I have money to tip them, I guess....) So they put Catherine in a wheelchair, and are about to wheel her to the special first class waiting room, when they see that the train is coming in about 3 minutes, but there is no track up on the board, so they decide to just keep us there, and then take us directly to the train.....So finally they get the track number, and start wheeling Catherine through the catacombs to get us to the track....we stop in front of an elevator, which was too crowded, so we decide to wait for the next one....it must have been 200 degrees in that hallway waiting.....finally we get down there, and the train is there, and we have come out by the back of the train....well naturally the FIRST car is the first class car, so he wheels her all the way up there......OK, on the platform, it is like 4 feet wide....the left 2 feet is smooth cement and the right two feet is (I can't think of what you'd call this, but) like a "stamped" steel.....steel with bumps all through it.....so the whole way down the length of the train her left wheel is on smooth and her right wheel is on bump, bump, bump, bump (it was too narrow to get both wheels on the smooth surface).....Oh my God, if I had been carrying a gun, you would have heard about me on the evening news.....I wanted to kill someone/anyone/EVERYONE! So FINALLY we get to the entrance to the train (on the regular trains you have to step up three giant steps to get on, so I "made sure" (notice the quotations) the night before that they would get her on with a wheelchair lift, so she wouldn't have to do stairs...but the Acela is close to the ground, so they stop her at the train door, and tell her to get up with her cane and walk onto the train....You know the expression "Mind the Gap"? I mean there is like a 9 inch gap between the platform and the train, and she has used a cane for like 2 days, so far!!! I was a nervous wreck.....but, she got in without incident, and we got a seat (first one seat, and that one hardly reclined at all) So I asked the steward, and he said some of them recline more than others, and found her another one...so we moved!! Catherine had planned to sit near the window, with me near the aisle, so that I could get in and out as needed to get her stuff in the overhead....but of course, without being able to bend, she couldn't get into that seat without hitting her head on the overhead luggage racks, so she ended up on the outside and I had to climb over her everytime we needed something....Thank God the Acela is less bumpy than the regular....but it is not what I'd call "smooth"......The best thing about First Class was that you had free water, and they brought it to you, so I didn't have to walk to the cafe car....you also got a free meal, but they served it the minute we left Washington, which was too early for Catherine, so we just didn't get that....I was not at all impressed with the first class seats, they hardly reclined at all, and the armrest between us did not go up, so there was no way to put her down on her side, or anything, she basically was sitting on her back from 2 PM to 9 PM....we did walk as best we could (I climb over her and get her brack out of the overhead, put it on her, walk her up and down the train aisles (at stations, because the Acela is not bump-free at all) So, since we're at stations, we have to dodge oncoming and off-loading passengers, (but they did most of the dodging...everyone was really nice to her) then I'd have to get the brace off, put it back in the overhead, reposition her, and then climb over her to my seat......Needless to say, I gave Catherine some of her drugs a little early at this point....(I had had a long conversation with her pain management dr. that day, so he told me exactly how to dose her, and what I could do early if I needed to, etc....I was so thankful for his help!) So, most of the way she slept fitfully.....I held her hands tightly so that if they fell when she dosed, it wouldn't wake her up....I had her iPod in one of her ears, and we made it to Washington.....Just before Washington, I asked if they would call ahead and make sure a redcap was there with a wheelchair...they said they would, but I didn't trust them, so I called Greg and asked him to do it too, (I probably said something like, "I don't care if you have to lasso one of them, or hold them up at gunpoint....just make sure someone is there to help us..." (because our original plan was to just have Greg circle the station and pick us up in front of the building) Anyway, the second after I hung up with Greg, an Amtrak lady came up to us holding a walkie talkie, and was like, "Ma'am, would a golf cart be ok, or does it have to be a wheelchair?" So, I knew they really were making plans for us (at that point, we were in the first class section, and so they were finally taking us seriously) Anyway, I called Greg back and he met the guy, and they made plans to meet Greg's car, etc....As we pulled into the station, I could see the golf cart!! So we both got in, and I held her as we went.....it was lovely to have the ride, but the ride was LONG!....and it was up steep ramps, and down steep ramps and around and over and through! I held her for dear life as we went, but they got us out to the front of Union Station, and it was really Catherine's first breath of fresh air! It was a lovely Washington evening....warm, but not hot...anyway, Greg finally arrived in Catherine's car....he is so gentle and caring....so he came with a bunch of stuff....pillows, food, drinks, you name it...and he helped her into the car much better than the other people....We drove about half way home....I think either the pain was a little less, or she could just see that the end was in sight...she seemed a bit better going home....I was "stuffed" into the back seat with all our stuff, and all the stuff Greg had brought for "just in case"....it was probably laughable to see me! We stopped at a rest area after half an hour (half way) and we got her out and walked her with her brace up and down the sidewalk...then we got in and got her home.
For those of you who have not been to our home before, we have the unpaved "Driveway from Hell" at our house....But my neighbor cut in a new driveway to her house, so we used that driveway to get up the hill....
and finally we were HOME!!
The hospital bed was all set up, Greg had bought nice new sheets (not hospital white!) and he even bought us a bouquet of flowers....Everything was set up nicely for her to watch her tv, get her water and meds, etc. (We have rented a hospital bed, so it's nice to have it)
The night was great. I set the alarm for every 3 hours and made sure she had her meds on time, so she woke up today in good spirits.....Up until now, I have been with her in the hospital from about 7 in the AM to 8 or so in the PM, and then I was going "home" to my hotel room and falling dead asleep until the next morning at 6...but now, I am getting up every 3 hours.....11:30P.M., 2:30A.M., 5:30A.M., etc. So it's a little more challenging for me...but I really want her to have her pain meds on time, and get her under control.
Well, I know this blog has been very long....thanks for letting me "vent"
Catherine is in good spirits this AM...she is in relatively little pain, has had a phone call or two already, and has had breakfast....she has eaten more today than she did in the hospital, too.
I think in a day or so we will be ready for visits, phone calls, etc. I know she will enjoy hearing from you, and has already started using her Blackberry. She has a lot of unanswered calls, so you might just want to call again, I'm not sure when or if ever she will catch up! Ditto for me...I have not looked at my email yet, and don't know if Greg has or not.
Well, let me sign off so you get this post.
Cindy
Yesterday was a challenge, but we are here now. Catherine was a trooper through the whole thing. If I never travel on Amtrak again, it will be too soon. I want to tell you the whole story, but honestly am not sure I'm ready to re-live it yet! Suffice it to say, by the time we got into Penn Station in NYC, I was practically in tears! OK, here goes!...
I called Amtrak the night before to make our reservations....I upgraded to First Class because those seats were supposed to be better, and I was also assured that a red cap would be waiting for us with a wheelchair if I went in and told them our reservation number......I also called a car service, and they were to drive us to the "handicapped accessible" entrance to Penn Station....
So, first the orderly wheels her down to the car, and then we find that we can barely fit her into the car, since she is taller than before, and can't bend over, so he practically stuffs her head into the car to get her in ! The car ride, was pretty excruciating for her....Between bumps in the road, rush hour traffic, and the fact that we forgot to take her brace OFF while she was in the car, so it was poking her the whole time.....etc. etc. The driver was really nice and concerned, and asked if he should drive even slower, but we said no....at that point we just wanted to get there, and you really can't drive "slower" in NY because all the drivers are crazy, and if you leave literally (I am not exaggerating) more than 2 inches between you and the car in front of you, another driver will force his way into that space! The roads in NY haven't been patched in 100 years, I think....they were awfully bumpy, and she was gripping my hand like anything, so I know she was more than uncomfortable.....Also, we forgot to take her brace off, so that was jabbing into her the whole time....well, I wrestled the brace half off after some of the trip....The traffic was awful, so it took almost an hour to get there....I had stupidly put the bag with her pain meds in the trunk, thinking we would be there in 15 mins....so, at a red light, I asked the driver to pop the trunk, and I got out and got her meds and a ginger ale I had taken from the hospital with me (thank Goodness I had) Without realizing, I slammed the trunk so it would close the first time, and even that was painful to her..... So, finally we reach Penn Station, and I hop out and ask where you call for the redcap....I am directed to this little (un-manned)booth, on the outside of the building with a call button.....I called, gave my name and reservation number, and ask for the redcap, and she says to me, "where are you?" (I'm wherever this call button is located, you idiot!) So, I try to tell her where I think I am, and she says, "OK, I'll send somebody" So, I am thinking someone is on the way......Long story short....I keep calling and calling, and going back to the car, and I'm getting more and more freaked out, and there is no red cap in sight! I call and say, "Please, my daughter is in pain, please send a redcap" and all I get is, "OK" or "he's coming" After like 20 minutes of calling on a call button, and getting a person saying, "He's coming...", I call again, and get....no answer! (they knew it was me, so they just didn't answer!) I just pressed again, and I lit into whoever it was on the other end...."I paid $600 for these stupid tickets and I was told a redcap would be here, and blah, blah, blah.....(I have no idea what I said, but I was NOT happy" At least the person I got this time was more coherent than the others....(maybe they got their supervisor to answer), and she explained that there is no redcap assigned to me..they just call and the "next available" one comes......Well, at least that made some sense to me now, instead of just "OK", but that was definitely NOT what I was told on the phone the night before when I specifically made "handicapped reservations"......So I went back to the car, which the driver was kindly talking to Catherine, and running the a/c for her, and explained the situation. So Catherine finally said, "Let me try to walk it"....I had no idea how far it was, but it was like 3:30 by this time, and our train left at 4, (last available train for the evening), so I said ok....the driver was like, "Are you sure??" So we said yes, and he helped Catherine out to her feet, and me with the bags, etc. OH--insert here.....Catherine's dad came up this AM and got the bulk of our luggage to take home in the car....THANK GOD....because this way, all I was carrying was bags full of pillows to stuff around her, her pills, and other things she needed for the trip... I NEVER would have made it with that stupid 50 lb. rolling suitcase I started the trip with.....
OK, so next disaster....where we had pulled up was an odd place....it had these large cement planters all over, which helped to sort of block off an area like a small "official" parking lot, where there were a few Penn Station trucks and cars parked....there was also a long covered taxi line, a ramp that led into the station, and another area that looked like a parking garage, (it went underground) but it also was official....the Pepsi truck that fills the vending machines, etc. was in there......So, just around the time that we are deciding whether or not to get Catherine out of the car or what (she's not supposed to stay in one position for too long, and at this point she's been stuffed in this car for like an hour and a quarter) this blind man comes along with a cane, and he is getting himself all tangled up in the cement planters....he is really close to our car....I overheard him ask some young ladies what street he was on...but after they talked to him, he was still not making progress down the street, but just avoiding the oddly placed cement planter/obstacles, going around in circles.....So we decide to take Catherine out of the car, so the driver and I get out of the car. The driver goes up to the blind man and very politely tries to explain to him where he is, and how to get out, and they guy starts saying, "I don't need your help! Blah, blah, blah..."--very nasty to my driver.....So the poor man just turns back to me and we shrug our shoulders at each other, and we proceed to get Catherine out of the car.....In the process, this blind guy gets circled around again, and starts whishing his cane precariously close to Catherine, as I'm trying to get the bags, etc....there is no wheelchair in sight.....So I say to the man, something like "Please go to the left, I have another handicapped person here, and I don't want you to hit her, she just had surgery...."or something like that...so he says (in a psuedo-friendly voice) "Another handicapped person??? Who's the other handicapped person?" So I say, "My daughter" So then he says, "But who's the other handicapped person?" He keeps following us, and saying it again and again, so I say, "Look, sir, I'm sorry if I insulted you, I just need to keep people away from bumping into my daughter" and he's like "Insulting me? Who's insulted? I just want to know who the other handicapped person is." Oh my God, it was a nightmare! Catherine was like, "Mom, just stop talking and keep moving!" So, we finally got away from him....we're walking toward the station, no redcap in sight.....the walk was long, but people were very nice to us, trying to tell us what elevator to take, etc. We get into the station proper, and we're looking for where Amtrak is, as opposed to the million other options in the station...Long Island RR, etc......then we're trying to find the waiting room....a lady ran ahead for me and told me I was going the right way, and finally we got put in a waiting room, handicapped seating area (even though it said you had to show your tickets to get in the waiting room, they let us through, (I think they could see I was beside myself at this point) The first thing I see in the waiting room is a redcap and a wheelchair, so I said, "We have been waiting outside, and I have been calling for the last half hour for a redcap with a wheelchair"....(no big response from said redcap......) So, they let me go out of the waiting room, and leave Catherine there, to go to the machine to pick up my pre-paid tickets, which I did, and then I bring them back in.....all of a sudden, "OH....you're FIRST CLASS????.....Let me take care of you, you're not supposed to be in this waiting room....I'll take care of you..."
(now that they think I have money to tip them, I guess....) So they put Catherine in a wheelchair, and are about to wheel her to the special first class waiting room, when they see that the train is coming in about 3 minutes, but there is no track up on the board, so they decide to just keep us there, and then take us directly to the train.....So finally they get the track number, and start wheeling Catherine through the catacombs to get us to the track....we stop in front of an elevator, which was too crowded, so we decide to wait for the next one....it must have been 200 degrees in that hallway waiting.....finally we get down there, and the train is there, and we have come out by the back of the train....well naturally the FIRST car is the first class car, so he wheels her all the way up there......OK, on the platform, it is like 4 feet wide....the left 2 feet is smooth cement and the right two feet is (I can't think of what you'd call this, but) like a "stamped" steel.....steel with bumps all through it.....so the whole way down the length of the train her left wheel is on smooth and her right wheel is on bump, bump, bump, bump (it was too narrow to get both wheels on the smooth surface).....Oh my God, if I had been carrying a gun, you would have heard about me on the evening news.....I wanted to kill someone/anyone/EVERYONE! So FINALLY we get to the entrance to the train (on the regular trains you have to step up three giant steps to get on, so I "made sure" (notice the quotations) the night before that they would get her on with a wheelchair lift, so she wouldn't have to do stairs...but the Acela is close to the ground, so they stop her at the train door, and tell her to get up with her cane and walk onto the train....You know the expression "Mind the Gap"? I mean there is like a 9 inch gap between the platform and the train, and she has used a cane for like 2 days, so far!!! I was a nervous wreck.....but, she got in without incident, and we got a seat (first one seat, and that one hardly reclined at all) So I asked the steward, and he said some of them recline more than others, and found her another one...so we moved!! Catherine had planned to sit near the window, with me near the aisle, so that I could get in and out as needed to get her stuff in the overhead....but of course, without being able to bend, she couldn't get into that seat without hitting her head on the overhead luggage racks, so she ended up on the outside and I had to climb over her everytime we needed something....Thank God the Acela is less bumpy than the regular....but it is not what I'd call "smooth"......The best thing about First Class was that you had free water, and they brought it to you, so I didn't have to walk to the cafe car....you also got a free meal, but they served it the minute we left Washington, which was too early for Catherine, so we just didn't get that....I was not at all impressed with the first class seats, they hardly reclined at all, and the armrest between us did not go up, so there was no way to put her down on her side, or anything, she basically was sitting on her back from 2 PM to 9 PM....we did walk as best we could (I climb over her and get her brack out of the overhead, put it on her, walk her up and down the train aisles (at stations, because the Acela is not bump-free at all) So, since we're at stations, we have to dodge oncoming and off-loading passengers, (but they did most of the dodging...everyone was really nice to her) then I'd have to get the brace off, put it back in the overhead, reposition her, and then climb over her to my seat......Needless to say, I gave Catherine some of her drugs a little early at this point....(I had had a long conversation with her pain management dr. that day, so he told me exactly how to dose her, and what I could do early if I needed to, etc....I was so thankful for his help!) So, most of the way she slept fitfully.....I held her hands tightly so that if they fell when she dosed, it wouldn't wake her up....I had her iPod in one of her ears, and we made it to Washington.....Just before Washington, I asked if they would call ahead and make sure a redcap was there with a wheelchair...they said they would, but I didn't trust them, so I called Greg and asked him to do it too, (I probably said something like, "I don't care if you have to lasso one of them, or hold them up at gunpoint....just make sure someone is there to help us..." (because our original plan was to just have Greg circle the station and pick us up in front of the building) Anyway, the second after I hung up with Greg, an Amtrak lady came up to us holding a walkie talkie, and was like, "Ma'am, would a golf cart be ok, or does it have to be a wheelchair?" So, I knew they really were making plans for us (at that point, we were in the first class section, and so they were finally taking us seriously) Anyway, I called Greg back and he met the guy, and they made plans to meet Greg's car, etc....As we pulled into the station, I could see the golf cart!! So we both got in, and I held her as we went.....it was lovely to have the ride, but the ride was LONG!....and it was up steep ramps, and down steep ramps and around and over and through! I held her for dear life as we went, but they got us out to the front of Union Station, and it was really Catherine's first breath of fresh air! It was a lovely Washington evening....warm, but not hot...anyway, Greg finally arrived in Catherine's car....he is so gentle and caring....so he came with a bunch of stuff....pillows, food, drinks, you name it...and he helped her into the car much better than the other people....We drove about half way home....I think either the pain was a little less, or she could just see that the end was in sight...she seemed a bit better going home....I was "stuffed" into the back seat with all our stuff, and all the stuff Greg had brought for "just in case"....it was probably laughable to see me! We stopped at a rest area after half an hour (half way) and we got her out and walked her with her brace up and down the sidewalk...then we got in and got her home.
For those of you who have not been to our home before, we have the unpaved "Driveway from Hell" at our house....But my neighbor cut in a new driveway to her house, so we used that driveway to get up the hill....
and finally we were HOME!!
The hospital bed was all set up, Greg had bought nice new sheets (not hospital white!) and he even bought us a bouquet of flowers....Everything was set up nicely for her to watch her tv, get her water and meds, etc. (We have rented a hospital bed, so it's nice to have it)
The night was great. I set the alarm for every 3 hours and made sure she had her meds on time, so she woke up today in good spirits.....Up until now, I have been with her in the hospital from about 7 in the AM to 8 or so in the PM, and then I was going "home" to my hotel room and falling dead asleep until the next morning at 6...but now, I am getting up every 3 hours.....11:30P.M., 2:30A.M., 5:30A.M., etc. So it's a little more challenging for me...but I really want her to have her pain meds on time, and get her under control.
Well, I know this blog has been very long....thanks for letting me "vent"
Catherine is in good spirits this AM...she is in relatively little pain, has had a phone call or two already, and has had breakfast....she has eaten more today than she did in the hospital, too.
I think in a day or so we will be ready for visits, phone calls, etc. I know she will enjoy hearing from you, and has already started using her Blackberry. She has a lot of unanswered calls, so you might just want to call again, I'm not sure when or if ever she will catch up! Ditto for me...I have not looked at my email yet, and don't know if Greg has or not.
Well, let me sign off so you get this post.
Cindy
Tuesday, August 12, 2008
Tuesday, Aug. 12, ...Good News
We are going home to Virginia tomorrow!!
We haven't seen Dr. B today yet, but everyone says we are going home tomorrow. It's Tuesday, so Dr. B has 2 surgeries today. We thought we might see him between surgeries, but he didn't come, so maybe later this evening, when he's done....
Anyway, there is a ton to be done before she leaves--packing up both the hospital room and the hotel, checking out of both, making train reservations, and car reservations to get to the station, etc. etc. But hopefully I will get it all done.
Here is the picture I took last night of the flowers, balloon and bear that arrived yesterday...I cut the flowers off of the picture accidentally...the white ones are from Ashley, and the colored ones are from K2.....
We probably won't send any more blogs until after we get home....Catherine's dad is coming tomorrow to take our stuff home in his car...so that I can just have Catherine to be responsible for on the train, and not Catherine AND luggage....so, anyway, he will probably take the computer with him, to save me carrying the extra weight home.
So, this will probably be our last blog for another 24 hours or more....
Thanks to everyone! Talk to you soon from VA
Cindy
Monday, August 11, 2008
Surprises!
Had to get on again this evening, as a gentleman came in with a huge surprise for Catherine. A beautiful bouquet of flowers, a "Get Well Soon" balloon, and a "big brother" for K2M bear!
So now she has a bear for each elbow! (we sometimes use the bear to support her arms instead of a plain pillow) Thanks to the engineering department for the great gifts. The delivery man opened the flowers, tied the pillow to the end of the bed, and gave Catherine the bear....so, at dinner time, when she sits up again, I will get a picture of her with all her gifts.
Be back later!
-Cindy
So now she has a bear for each elbow! (we sometimes use the bear to support her arms instead of a plain pillow) Thanks to the engineering department for the great gifts. The delivery man opened the flowers, tied the pillow to the end of the bed, and gave Catherine the bear....so, at dinner time, when she sits up again, I will get a picture of her with all her gifts.
Be back later!
-Cindy
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