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Week 4: March 24 - 30
Day 24 – March, 24, 2008 / Monday
Well I got to Nu Tech about 830am this morning to make sure our girl was up and ready to go; and to help Dianne learn the routine since today would be her first day actually here at Nu Tech. Should be an eye-opener for sure.
Kasie, of course running late and hit the hallway traffic jam....but all is good. PT and the normal banter with the PT staff, followed by a stem cell injection. Dr. Shroff was down in PT today checking on everyone's progress...and was so genuinely excited as she watched one of the other patients walk with his calipers for the very first time. She was beaming like a proud momma and saying she loves her job. She is so inspiring for her patients.
Then an afternoon nap – our girl was pretty tired and when afternoon PT rolled around and she asked to skip it, I said ok – but she had to promise to go to yoga – and do more than the breathing exercises today – deal. Shivani was okay with that.
This morning about 11am Lynne Coughlin Samson an Executive Director from NTAF (the National Transplant Assistant Fund) stopped by for a brief visit with Kasie. This is the fund that helps coordinate any donations Kasie receives and ensures she remains tax exempt so as not to lose her Medicare, Medicaid and Social Security disability benefits. Anyway, Lyn who happens to be visiting her brother her in India is based out of Philadelphia, she had also hoped to meet with Dr. Shroff and Dr. Ashish, however they were in a meeting, but she might try and catch them towards the end of the week.
After they left and Dr. Shroff was done with her meeting, Kasie and I went downstairs and visited with her for awhile. She continues to be so pleased with Kasie's progress. We talked about her now being “published' and going out for per review. That will hopefully help make strides for her research and treatment to be accepted worldwide. Wouldn't it be great if people could get this kind of treatment close to their own homes – or at least in their own countries instead of having to travel halfway around the world. Kasie was about to fall asleep on Geeta's desk so back up the room for her to take a quick 'little' nap...but since she was so tired it turned out to be a longer nap...and she wanted to skip PT and I said ok, but made her promise to go to yoga – and SHE agreed...wow. So we let her sleep until yoga...and off we went. She actually loved some of the stretches – hello Kasie, what have I been saying! I'm so glad she enjoyed yoga – finally.
Not sure what lead us to CityWalk Mall tonight, oh yes, our little mall princess Kasie. She wanted to get a couple t-shirts for PT. Anyway, a big, monstrosity of a mall – and inevitably the loudest place on the planet. The music was blaring so excruciatingly loud that we could barely hear each other – and that was in the mall, in the shops...in the Coffee Bean. It was ungodly, I'm sure we all lost some hearing while there. And very western in flair...Esprit, Benneton, Tissot, Nine West, Van Heusen , Nike, Reebok, Puma, Levi – you get the picture...but at least she found a few t-shirts at good prices.
We found Kasie's new # 1 restaurant in India, the 'Spaghetti Kitchen', holy posh Italian grill. Everything from pizza to elegant main courses. A touch on the pricey side for what we're used to around India - about $13/person...uh not bad really price – and the food was fantastic! And like Geeta said – SHE HAS to eat, and even though she tries to eat the hospital food from time to time – she fails miserably at it, unless it's a baked or boil potato....all the rest – the curry and the chicken not working for her. Well the BEST thing about this restaurant which was at this insanely loud mall – did I mention the decibel level was like 10 GAZILLION what it should be, was that it was in fact peaceful and quite – thank heavens!
Wow, we're late – missed our curfew....ah, we're okay it's only about 9pm in fact. Well back to the room and time for some BP check and stem cell injection. Hung out to visit for a bit and then at about 11pm I'm off to my hotel.
Day 25 – March 25, 2008 / Tuesday
Breakfast this morning – Fruit Loops - with the floor mates. Hmm, sugar, that'll get her going!
PT and stem cells, are you getting used to the routine? Kasie is and you can see it because she is comfortable and confident and STRONG in all her exercises.
Deepak 'told' her that she would be receiving her 3 day procedure tomorrow – but she didn't believe him because he jokes wth her so much, and yesterday when we met with Dr. Shroff, she had said that it would be next week. Kasie had asked her to maybe do another 2 day this week, so she could “build” up to staying at the other hospital for 3 days, but Geeta told her no – and that they were too busy this week. But as it turns out – it's true, tomorrow is going to be the 3 day procedure.
Afterwards our girl was tired, so back up to the room to rest. It's been real hot, and the PT does wear her out, so good to rest when she feels like she needs it.
Asha came up to the room with a release to sign for tomorrows procedure, so it's for real; not just Deepak teasing her. She's excited for it, but a little apprehensive because it is THREE days at the other hospital and a lot of not moving. This afternoon I went out and left Dianne to look after Kasie and make sure she got to PT. I'm feeling SO much better, so much so that while I was out with some new friends we had lunch out, on the street so to speak, well it was a restaurant of sorts I guess....so we'll see...being adventurous.
Hmm, naan.
During PT, Kasie had some new exercises added to her routine – that's great, because it'll help to change things up now that she's so used to the others. Dianne took photos - will add when get them.
I got back just as she finished PT at about 3pm and met up with them. We met with Dr. Ashish which was good because I had some questions. Like when – well they had that one answered already during PT, ok – 11am. But here's the rest of what we found out, so Kasie can be “prepared” and Dianne and I can plan accordingly. Kasie willl have PT and normal injection here at Green Park in the morning. Then she'll be whisked off to to the other hospital, her favorite detention center and we'll check-in...and then up to her cell – oh I mean room. She'll be given her I, and yes Kasie it will have to stay in the full 3 days while you're there. We reminded Dr. Ashish of the issues she had last week with the IV and he said he would do her IV. he will also set up an intermittent (IV) catheter for her so she doesn't have to deal with the issues with the sisters like last time. And then at some point in time, fairly early according to Dr. Ashish, be taken down to the operating room where he will perform the procedure. This procedure will place a “stint” in her back just at the level of injury. It won't be exactly into the spinal cord, but essentially into the spinal column. This 'stint' will remain in place for the 3 days and allows him to inject stem cells at this level each day, twice a day, without having to do the procedure again. After the first injection/infusion, she will not be allowed to move for 5 hours...then she can sit up and move about; her evening infusion will require her to be immobile for 2 hours afterwards. Thursday she will receive a morning and evening infusion and the times for immobility will depend on how he positions her after each infusion; and then same thing again on Friday. While at the other hospital she will be able to move around sporadically, and even roam around the hospital, which yeah – not a lot of room to roam actually. But at least she won't be totally couped up for the entire stay. We expect to be back to Green Park on Friday night about 7pm (India time – which would be about 730am Friday morning in CO). During the 3 days at the other hospital we won't have internet service...so we'll be out of touch for a bit - I might try and run back to Green Park while Dianne's with her to update...we'll see how it goes. Both Dianne and I will be there....I will stay with Kasie, and Dianne will stay at Green Park so we're not overcrowded into that little detention cell. If Kasie REALLY drives ME nuts, we'll swap – haha. Despite the internet being back up here – the speed of the connection is SO slow that loading photos and video takes forever....if they even go through. With all that “free” time at the other hospital, it'd sure be nice if they had internet and could work on it then....but no.
Dinner out with friends tonight – a last meal if you will before having to be couped up for 3 days. Kasie feeling a little nauseous though, but had some REAL ginger soda water and that seemed to calm her stomach a bit...must have, because she had room for some YOGHURT WILDBERRY Gelato.
Anyway, that's the scoop for now...it's going to be a long 3 days...more when we can...
Day 25 – March 25, 2008 / Tuesday night - guess forgot this part
Anjilia - “Angie”, by far Kasie's favorite sister (didi), stopped by to check her BP and give her her nightcap stem cell injection. The regular chit chat about “boys” and that Angie's parents are trying to arrange a marriage for her – we're invited, of course. Kasie shows her photos of our weekend 'adventure' and the monkey feeding. Of course she gives Kasie that stern look and tells her it's not safe to feed the monkeys and of course Kasie tells her that SHE's had HER rabies shots (bat girl...). Angie is certainly amused by the antics of our girl, here and at home. She “gets” Kasie – and does think she is 'charming' despite Kasie's occasional frustration and moodiness with the sisters over the “intrusions”. Angie is a wealth of knowledge for us about India and speaks English very well so we actually understand what she's telling us. Another one Kasie would like to take home for sure, Papa send a bigger suitcase. In fact she was trying to convince Angie to come to the other hospital with us tomorrow to be her personal nurse so she would have to deal with all the trials and tribulations of the sisters she doesn't know over there.
Day 26 – March 26, 2008 / Wednesday
Arrived at Green Park at a little after 7am, to make sure our girl was up and getting herself ready for her big day. Well awake yes, out of bed, no...but she got rolling fairly quickly. She said she didn't sleep very well, that her stomach had been bothering her all night, but she was feeling better now – but EXHAUSTED. Well that might actually prove to be a good thing after the procedure today, she should be able to sleep.
Out of the room by just after 9am – just a little traffic jam this morning not too bad.
This mornings PT, more of the same...and then while in the calipers while she was walking...she also did some “side” stepping. She started this yesterday – but no photos of it. She holds the rail bars and her movement is lateral as SIDE steps out from her hips . She is stronger to the left and says it is easier in that direction. But she is frustrated with this lateral motion and her progress because it is new to her and she has yet to master it. She says it is much harder than walking. Dr. Shroff and Dr. Ashish in PT checking on everyone at about 11am, so we're not late to head to the other hospital for the procedure because they're here. Dr. Shroff decides that even though Kasie may not be pleased with the side stepping exercises, she is. Except she'd like to see Kasie stand up straighter and lean over less on the bar, but that will come with time and practice.
(more photos to follow - download link failing)
Then Dr. Shroff brings over a set of 'crutches' for Kasie and wants to see her walk with them. They would love to wean her off the walker and onto crutches. WHAT?, isn't that a little soon? She still doesn't have the stamina to go great distances even with the walker yet...but Dr. Shroff believes the sooner she gets started on utilizing the crutches, the more comfortable she will become with them. So...first time, EVER, that Kasie has walked with the crutches. A little wobbly at first, because she needed to get the hang of the balance and weight shifting of her body, as well as the crutches, required to maneuver herself with them. That is definitely going to take some time and practice. BUT, OMG she did great for the first time out! Bonus – she didn't fall flat on her face – she didn't fall at all in fact. She held herself up and was able to take about 10 steps in total, she thinks it was about 4...but that's because it was exhausting. She has such great upper body strength, which will seriously pay off here...and I kept reminding her that so she'd realize that she CAN do it...and IS doing it, you go girl! You rock!
(photos to follow - download link not working)
After PT, back up to the room to gather up our things – we're taking everything with us including the kitchen sink this time. Three days at the Gautam Nagar Hospital is going to be like an eternity and then some. Well we've got all the goods to take with us, if we forget something Dianne can always bring it, since she'll be traveling back and forth between the 2 hospitals, while I stay with Kasie overnight. Still trying to ease Dianne into India and how life with Kasie in a hospital - in India of all places, really is. Rude awakening ain't it?
Finally, a quick check in on the floor mates....should see some of them over there today or tomorrow for...a 3 day procedure; and the other for a 2 day procedure. Then off the 3 of us go; crammed into the little car, 3 in the back seat the size, actually smaller than an old school VW Bug...wheelchair in the front seat, tires in our laps, and LUGGAGE and FOOD in the 'trunk'.
As we're arriving at the hospital, “welcome to the ghetto” - KB; so Dianne, what did you think? “Oh shit” -” oh, don't put that in there, put like 'shoot'” – (yah, whatever...) – “but kind of like oh, where are we, and what are we doing here”...ah yes Dianne, WELCOME to India, yet again! As for Kasie and me, we're definitely used to the place...it's becoming quite appealing, not. Seriously though, Kasie and I are SO used to India – well at least Delhi, we are really quite comfortable. If it weren't for the pollution, the overcrowding, the beggars, the smells, and the utter filth, I'd have to say we love it. Seriously, there is something about India that gets into you – at least for me (Kasie getting there I think)...despite all the hustle and bustle...there is also the calm and serene. And the people are so nice and genuinely caring and OMG patient like you wouldn't believe...guess you have to be when there's 13 + million people in the city.
Check-in, super smooth today, only a couple forms for Kasie to read and sign...huh, yeah read? not so much – well sign at least, “Sonia?” - “uh Kasie, even if it turns you blue, eh?” “No doubt...” Upstairs we go – to room 202 again...we like it, it's the larger room...more comfortable for the 3 of us to hang out in pre and post procedure since it's so roomy compared even to our room at Green Park...and we NOW know how to operate the air conditioner – a little rocket science required...but we're there now.
Dianne was wishing she brought something with her to keep herself entertained here; as I'm writing and setting up some photo files to make downloads easier if and when we ever get back to the internet access that will STAY connected – figuring I'll actually have to do the videos when I get back to the states and have high speed access...and Kasie is playing on her computer and of course has to spout off “didn't you get the memo...”, ah, well perhaps not...I guess at least Dianne's got the TV if she gets really bored.
Two sisters come into set up Kasie's IV, we remind them, NOT in the hand. Ok, no problem. Kasie, however starts to work herself up right away and that of course starts to snowball and she's almost panicking about how much it's GOING to hurt. Kasie, relax – they haven't even pricked you yet...you've got Ted, Marine Bunny and Lucky to keep you company....and holy cow you've got some grip – can I have my hand back, it's not that bad. They do get the IV in, first try – no problems; just above her wrist this time, not quite at the wrist where they did last time. Kasie begins complaining about it hurting too much and it's not right and that the needle is poking through, and that blood is coming out - “look you can see it”....hum, no Kasie, I'm calling you on this one...discomfort, yes I'm sure; poking through, no – I can see, or rather, I CANNOT see it poking through; blood coming out, well yes, that is where she drew back to make sure she was in your vein, nothing to worry about....RELAX girlfriend, it's not that bad and perhaps one day the indentations you left in my hand will go away. I still think it has to do with the stems cells making her hyper-sensitive to certain things and the fact that there is no topical anesthesia to just numb up the area a bit before they insert the IV. But she's still complaining...okay Kasie - relax – you have 2 options, either they redo it now...or you cowgirl up and see how it feels in a little bit and then if still a problem they can redo it, because yes it's going to be in for the full 3 days. Ah that's a good COWGIRL, I'm sure you'll be fine – because YOU KNOW if I didn't think so, I would have had them do something else...and besides Dr. Ashish and the anesthesiologist will double check it when you get to the OT, so let them know if it's still bothering you as much.
202pm she's off to the operating theater for her procedure. Opie – aren't you so proud of me, I'm not badgering you about going with her today, I didn't even ask to go.
Dianne and I had a great surprise for Kasie. We took the chair/bed and put it on the hospital bed. And Dianne DID bring a fitted sheet from home, an extra one in fact per our “wish list” of things for her to bring for Kasie. So we made up the bed for Kasie to to be more comfortable since she'd have to be immobile for so many sessions during the next 3 days.
3:26pm our girl returns...and I had just been commenting to Dianne that she was gone longer than the last two times...and they said this was only going to be a ½ hour and it's been a about 1 ½ now...Opie how did she do...”crying”...hmm really, “no, but she's a baby...REALLY? ah, he's just giving her a hard time...sort of. hey shift her to the bed, oh wait they notice that the bed is now MUCH higher, what's going on? We have to explain to them what we did and they seemed to be a little concerned that the sections would be a problem – uh, no...and oh is Kasie psyched, it is SO comfortable. Anyway, Opie tells me that she can't move until 7pm, then at 7pm she can roll over on her side and we can have the bricks taken out from under the bed (you know - the positional gadgets), and then at 730pm she can sit up. Also, she can't drink for 1 hour and she can't eat for 2 hours. Ok Opie – got it covered.
3:30pm sister comes in to check BP – Kasie, “are you serious, I've been here for like 2 minutes and they just did it downstairs”....uh, yeah, what I can't figure is 'why aren't you used to this yet?' Kasie, “What was it it 110/80”, sister – “yes”, Kasie – “yeah that's what it was 5 minutes ago....if I had a mood ring it would be neon black (blacklight) and it would stand for annoyed...” yeah, she's feeling fine...
“So Sonia, I have to tell you what happened before I forget - Dr. Ashish made sure he told me what he was doing so I could remember it to come and tell you....(ah, he's thinking, what a guy!). Ok, so he told me what he was going to do and then he had to take the tape off so he could put in the antibiotic for the IV, that's when they said I was being a baby – hurt like &#*@!. So let's see, then they rolled me on my side and then swabbed, swabbed, and swabbed some more my back, below the site of injury at about T10, T11, T12. Then they had me tuck my chin to my chest. And then he placed the stint at just below my level of injury and that 'felt' like bone popping, and I could hear it and my bladder was spasming a lot and so were my legs, and then they taped, and taped, and taped some more...and then rolled me back over...the tube runs up to a port up on the front of my right shoulder and then he injected like 3 or 4 syringes of stem cells into the port. Could feel it coming up my spine, and my abs felt so tight and my legs spasmed really stiff and freaking out – but in really good way, and it felt like someone was sitting on my chest. I could feel the injection going up as the stem cells traveled from the entrance point into my spine and up to about T7 where it stops. They were asking me if I was abouriuoi, WHAT, akjdfke, WHAT, athletic, OH,athletic, yes, ?why? - because most athletic type people don't complain about any pain or discomfort and I wasn't; but I wasn't afraid to whine about the IV hurting. Ok it MF hurts, I will give you an outline and everything of how it hurts. I'm glad I can't feel it, because I saw the needle, it's huge...seriously it's big, it's like a 14 gauge or 16 gauge needle, I don't know it's huge.”
Well, I think she covered it in her own words...
Dianne's surprised Kasie wasn't drained or anything. Actually Kasie is really perky...didn't have to have anesthesia today, that's a good thing. But of course she's pretty wired and is of course talking a mile a minute, go figure. Blah, blah, blah, and “FYI – I wasn't being a baby...and next time I'm going to have them give you and IV too...” Ah, whatever... Dianne heads back to Green Park around 5pm, not much else to do around here, she'll be back in the morning.
Oh, Geeta ordered a check on her UTI today...we're wonderin' when we'll get the results back, maybe when we get back to the states....find some monkey disease instead of ecoli...
Oh, yeah 530pm and our “boyfriend's” back – Dr. McDreamy...hello Kasie – show him you can move your toes. Excellent! Um, can you recommend a good restaurant...hey thanks...we are definitely ordering in.
556pm – sister knocking to see if the 'guy' can clean the room – no thanks, we're good. “What the frizzle, we've been here like 4 hours - KB”. Not sure what that was all about.
648pm – BP check
Hey, it is 648pm, where is dinner I ordered it like over an hour ago.
Now it's 705pm...and Kasie can roll over on her side...yahoo....got the guys to remove the bricks....oh and now dinner's here...delivered by a kid like all of 9 years old. The takeout containers here are a riot. The food – cheap, but really good in fact...we're psyched...Kasie having Chinese, I'm having Indian...wondering if Dianne actually got her dinner at Green Park...because before she left we had arranged to have her dinner at Green Park...and we said no dinner for us because we knew we were going to order in – no more hospital food thank you.
About 9pm Dr. Ashish came by to give her her injections into the the port actually stayed and talked to us for quite awhile as well. I really like how Dr. Ashish will actually talk to Kasie, not just to me as to what is going on with her. The patient interaction is really appealing, he has a great bedside manner and we both really appreciate that.
So she's good, comfortable and we watch a movie for the night and get to sleep around 1am.
DAY 27 - March 27, 2008 / THURSDAY
Today, another long day at the Gautam Nagar hospital.
Dr. Ashish was supposed to be there about 9am to give Kasie her injections into her port,, however he was running late and didn’t arrive until about 11:30am. Once he was there she had to get into a position where she could lie comfortably for 2 hours without moving…and that took a bit of doing. But finally she got comfy on her LEFT side, received the injections, and the ever so important positioning of the bed.
And then 2 hours of listening to music and a nap. Afterwards Kasie was able to be up and about, until the afternoon injection series.
The afternoon series of injections into her port required her to lie on her RIGHT side this time, again without moving for 2 hours.
All in all a long, boring and tedious day in the room and mostly in bed for our patient. So nothing really new and exciting to report.
Day 28 - March 28, 2008 / FRIDAY
Can you say more of the same…well that was today of course. Another long and uneventful day in ‘detention’.
Our excitement this morning was me washing Kasie’s hair since she couldn't just take a shower because the port on her back couldn’t get wet until Saturday night. Talk about pampered and spoiled
After that getting both of us fairly soaked, Kasie had a morning series of injections into her port. She then had to lie motionless, yet again, as best she could on her stomach for 2 hours. Yeah, not the easiest to find that comfortable position. Um, " move that pillow here, shift my legs there, oh no let’s try the pillows here"…but eventually she got herself situated.
Then once her two hours were up, she was able to again get up move about.
Her afternoon shot was at about 5pm and that one she actually got to stay upright in her chair.
Last injections for this 3 day procedure.
And now finally they removed that IV line from her left arm, and boy was she relieved. Was it as simple as just pulling it out, why would you even think that. Of course there were some “issues” with the removal, but FINALLY it was out, hoorah!
About 7:30pm Dr. McDreamy removes the stint and tubing from her back.
About 8pm, they tell us our taxi is there and off just a little more paperwork, and away we go, back "home" to Green Park. Ah what a relief.
So once settled back in at Green Park, we ordered dinner in - Chinese for Kasie, Indian for me...oh Dianne you brave one...trying the the Mutton Curry from the hospital.
DAY 29 - March 29, 2008 / SATURDAY
I arrived from my hotel at about 745am. Dianne was in the lobby reading the paper and Kasie was in her room, sort of sleeping, but more realistically lounging about and avoiding getting out of bed. At about 8:45am she realized that she did indeed have PT this morning, and wasn't getting a reprieve simply because she was tired and had just had the 3 day procedure. But it was to be a light day of PT, so she dragged her butt out of bed and down to PT we went.
Sure enough, regular "light" leg, balance, and core strength exercises. But then of course was the re-match with Deepak.
Didn't go so well...
but maybe you need better background music, eh?
Then they decided her spunky and scrappy attitude today meant they wanted to see her walk...
So first into bars and walking...
then on to lateral movements
After PT, we spent some time hanging out around the hospital just relaxing...and then we went with a bunch of folks to Conaught Place - the CENTER of Delhi, and Janpath Market. Kasie was psyched because she got to ride in, as Marcia calls it a "tuck-tuck" as everyone else calls it, an auto-rickshaw. Sam and I rode with her, and Marcia, Dianne and Jacqui - as did her chair rode in a car, since it wouldn't fit in the "tuck-tuck". After some great bargains and the sheer FUN of haggling for things you don't need - it's a game for sure...and not everyone is a good player...but they're learning...with a little help from me and Sam - I think they're finally realizing there is NO way you should be paying "retail" here in India...we returned to Green Park. We gathered the rest of the floor and we all headed out for a dinner out together.
photo link is down - AGAIN...
Day 30 - March 30, 2008 / Sunday
Ah, my last day in India.
How depressing to be leaving Kasie. She and I did a little running around on our own today to just spend some time together and then we met up with Marcia and Dianne. Afterwards we returned to Green Park and I packed, we had dinner with Will and Marcia, I said my goodbyes to everyone and headed off to the airport.
Kasie - keep your chin up, you'll be great - only 5 more weeks.
Well I got to Nu Tech about 830am this morning to make sure our girl was up and ready to go; and to help Dianne learn the routine since today would be her first day actually here at Nu Tech. Should be an eye-opener for sure.
Kasie, of course running late and hit the hallway traffic jam....but all is good. PT and the normal banter with the PT staff, followed by a stem cell injection. Dr. Shroff was down in PT today checking on everyone's progress...and was so genuinely excited as she watched one of the other patients walk with his calipers for the very first time. She was beaming like a proud momma and saying she loves her job. She is so inspiring for her patients.
Then an afternoon nap – our girl was pretty tired and when afternoon PT rolled around and she asked to skip it, I said ok – but she had to promise to go to yoga – and do more than the breathing exercises today – deal. Shivani was okay with that.
This morning about 11am Lynne Coughlin Samson an Executive Director from NTAF (the National Transplant Assistant Fund) stopped by for a brief visit with Kasie. This is the fund that helps coordinate any donations Kasie receives and ensures she remains tax exempt so as not to lose her Medicare, Medicaid and Social Security disability benefits. Anyway, Lyn who happens to be visiting her brother her in India is based out of Philadelphia, she had also hoped to meet with Dr. Shroff and Dr. Ashish, however they were in a meeting, but she might try and catch them towards the end of the week.
After they left and Dr. Shroff was done with her meeting, Kasie and I went downstairs and visited with her for awhile. She continues to be so pleased with Kasie's progress. We talked about her now being “published' and going out for per review. That will hopefully help make strides for her research and treatment to be accepted worldwide. Wouldn't it be great if people could get this kind of treatment close to their own homes – or at least in their own countries instead of having to travel halfway around the world. Kasie was about to fall asleep on Geeta's desk so back up the room for her to take a quick 'little' nap...but since she was so tired it turned out to be a longer nap...and she wanted to skip PT and I said ok, but made her promise to go to yoga – and SHE agreed...wow. So we let her sleep until yoga...and off we went. She actually loved some of the stretches – hello Kasie, what have I been saying! I'm so glad she enjoyed yoga – finally.
Not sure what lead us to CityWalk Mall tonight, oh yes, our little mall princess Kasie. She wanted to get a couple t-shirts for PT. Anyway, a big, monstrosity of a mall – and inevitably the loudest place on the planet. The music was blaring so excruciatingly loud that we could barely hear each other – and that was in the mall, in the shops...in the Coffee Bean. It was ungodly, I'm sure we all lost some hearing while there. And very western in flair...Esprit, Benneton, Tissot, Nine West, Van Heusen , Nike, Reebok, Puma, Levi – you get the picture...but at least she found a few t-shirts at good prices.
We found Kasie's new # 1 restaurant in India, the 'Spaghetti Kitchen', holy posh Italian grill. Everything from pizza to elegant main courses. A touch on the pricey side for what we're used to around India - about $13/person...uh not bad really price – and the food was fantastic! And like Geeta said – SHE HAS to eat, and even though she tries to eat the hospital food from time to time – she fails miserably at it, unless it's a baked or boil potato....all the rest – the curry and the chicken not working for her. Well the BEST thing about this restaurant which was at this insanely loud mall – did I mention the decibel level was like 10 GAZILLION what it should be, was that it was in fact peaceful and quite – thank heavens!
Wow, we're late – missed our curfew....ah, we're okay it's only about 9pm in fact. Well back to the room and time for some BP check and stem cell injection. Hung out to visit for a bit and then at about 11pm I'm off to my hotel.
Day 25 – March 25, 2008 / Tuesday
Breakfast this morning – Fruit Loops - with the floor mates. Hmm, sugar, that'll get her going!
PT and stem cells, are you getting used to the routine? Kasie is and you can see it because she is comfortable and confident and STRONG in all her exercises.
Deepak 'told' her that she would be receiving her 3 day procedure tomorrow – but she didn't believe him because he jokes wth her so much, and yesterday when we met with Dr. Shroff, she had said that it would be next week. Kasie had asked her to maybe do another 2 day this week, so she could “build” up to staying at the other hospital for 3 days, but Geeta told her no – and that they were too busy this week. But as it turns out – it's true, tomorrow is going to be the 3 day procedure.
Afterwards our girl was tired, so back up to the room to rest. It's been real hot, and the PT does wear her out, so good to rest when she feels like she needs it.
Asha came up to the room with a release to sign for tomorrows procedure, so it's for real; not just Deepak teasing her. She's excited for it, but a little apprehensive because it is THREE days at the other hospital and a lot of not moving. This afternoon I went out and left Dianne to look after Kasie and make sure she got to PT. I'm feeling SO much better, so much so that while I was out with some new friends we had lunch out, on the street so to speak, well it was a restaurant of sorts I guess....so we'll see...being adventurous.
Hmm, naan. During PT, Kasie had some new exercises added to her routine – that's great, because it'll help to change things up now that she's so used to the others. Dianne took photos - will add when get them.
I got back just as she finished PT at about 3pm and met up with them. We met with Dr. Ashish which was good because I had some questions. Like when – well they had that one answered already during PT, ok – 11am. But here's the rest of what we found out, so Kasie can be “prepared” and Dianne and I can plan accordingly. Kasie willl have PT and normal injection here at Green Park in the morning. Then she'll be whisked off to to the other hospital, her favorite detention center and we'll check-in...and then up to her cell – oh I mean room. She'll be given her I, and yes Kasie it will have to stay in the full 3 days while you're there. We reminded Dr. Ashish of the issues she had last week with the IV and he said he would do her IV. he will also set up an intermittent (IV) catheter for her so she doesn't have to deal with the issues with the sisters like last time. And then at some point in time, fairly early according to Dr. Ashish, be taken down to the operating room where he will perform the procedure. This procedure will place a “stint” in her back just at the level of injury. It won't be exactly into the spinal cord, but essentially into the spinal column. This 'stint' will remain in place for the 3 days and allows him to inject stem cells at this level each day, twice a day, without having to do the procedure again. After the first injection/infusion, she will not be allowed to move for 5 hours...then she can sit up and move about; her evening infusion will require her to be immobile for 2 hours afterwards. Thursday she will receive a morning and evening infusion and the times for immobility will depend on how he positions her after each infusion; and then same thing again on Friday. While at the other hospital she will be able to move around sporadically, and even roam around the hospital, which yeah – not a lot of room to roam actually. But at least she won't be totally couped up for the entire stay. We expect to be back to Green Park on Friday night about 7pm (India time – which would be about 730am Friday morning in CO). During the 3 days at the other hospital we won't have internet service...so we'll be out of touch for a bit - I might try and run back to Green Park while Dianne's with her to update...we'll see how it goes. Both Dianne and I will be there....I will stay with Kasie, and Dianne will stay at Green Park so we're not overcrowded into that little detention cell. If Kasie REALLY drives ME nuts, we'll swap – haha. Despite the internet being back up here – the speed of the connection is SO slow that loading photos and video takes forever....if they even go through. With all that “free” time at the other hospital, it'd sure be nice if they had internet and could work on it then....but no.
Dinner out with friends tonight – a last meal if you will before having to be couped up for 3 days. Kasie feeling a little nauseous though, but had some REAL ginger soda water and that seemed to calm her stomach a bit...must have, because she had room for some YOGHURT WILDBERRY Gelato.
Anyway, that's the scoop for now...it's going to be a long 3 days...more when we can...
Day 25 – March 25, 2008 / Tuesday night - guess forgot this part
Anjilia - “Angie”, by far Kasie's favorite sister (didi), stopped by to check her BP and give her her nightcap stem cell injection. The regular chit chat about “boys” and that Angie's parents are trying to arrange a marriage for her – we're invited, of course. Kasie shows her photos of our weekend 'adventure' and the monkey feeding. Of course she gives Kasie that stern look and tells her it's not safe to feed the monkeys and of course Kasie tells her that SHE's had HER rabies shots (bat girl...). Angie is certainly amused by the antics of our girl, here and at home. She “gets” Kasie – and does think she is 'charming' despite Kasie's occasional frustration and moodiness with the sisters over the “intrusions”. Angie is a wealth of knowledge for us about India and speaks English very well so we actually understand what she's telling us. Another one Kasie would like to take home for sure, Papa send a bigger suitcase. In fact she was trying to convince Angie to come to the other hospital with us tomorrow to be her personal nurse so she would have to deal with all the trials and tribulations of the sisters she doesn't know over there.
Day 26 – March 26, 2008 / Wednesday
Arrived at Green Park at a little after 7am, to make sure our girl was up and getting herself ready for her big day. Well awake yes, out of bed, no...but she got rolling fairly quickly. She said she didn't sleep very well, that her stomach had been bothering her all night, but she was feeling better now – but EXHAUSTED. Well that might actually prove to be a good thing after the procedure today, she should be able to sleep.
Out of the room by just after 9am – just a little traffic jam this morning not too bad.
This mornings PT, more of the same...and then while in the calipers while she was walking...she also did some “side” stepping. She started this yesterday – but no photos of it. She holds the rail bars and her movement is lateral as SIDE steps out from her hips . She is stronger to the left and says it is easier in that direction. But she is frustrated with this lateral motion and her progress because it is new to her and she has yet to master it. She says it is much harder than walking. Dr. Shroff and Dr. Ashish in PT checking on everyone at about 11am, so we're not late to head to the other hospital for the procedure because they're here. Dr. Shroff decides that even though Kasie may not be pleased with the side stepping exercises, she is. Except she'd like to see Kasie stand up straighter and lean over less on the bar, but that will come with time and practice.
(more photos to follow - download link failing)Then Dr. Shroff brings over a set of 'crutches' for Kasie and wants to see her walk with them. They would love to wean her off the walker and onto crutches. WHAT?, isn't that a little soon? She still doesn't have the stamina to go great distances even with the walker yet...but Dr. Shroff believes the sooner she gets started on utilizing the crutches, the more comfortable she will become with them. So...first time, EVER, that Kasie has walked with the crutches. A little wobbly at first, because she needed to get the hang of the balance and weight shifting of her body, as well as the crutches, required to maneuver herself with them. That is definitely going to take some time and practice. BUT, OMG she did great for the first time out! Bonus – she didn't fall flat on her face – she didn't fall at all in fact. She held herself up and was able to take about 10 steps in total, she thinks it was about 4...but that's because it was exhausting. She has such great upper body strength, which will seriously pay off here...and I kept reminding her that so she'd realize that she CAN do it...and IS doing it, you go girl! You rock!
(photos to follow - download link not working)
After PT, back up to the room to gather up our things – we're taking everything with us including the kitchen sink this time. Three days at the Gautam Nagar Hospital is going to be like an eternity and then some. Well we've got all the goods to take with us, if we forget something Dianne can always bring it, since she'll be traveling back and forth between the 2 hospitals, while I stay with Kasie overnight. Still trying to ease Dianne into India and how life with Kasie in a hospital - in India of all places, really is. Rude awakening ain't it?
Finally, a quick check in on the floor mates....should see some of them over there today or tomorrow for...a 3 day procedure; and the other for a 2 day procedure. Then off the 3 of us go; crammed into the little car, 3 in the back seat the size, actually smaller than an old school VW Bug...wheelchair in the front seat, tires in our laps, and LUGGAGE and FOOD in the 'trunk'.
As we're arriving at the hospital, “welcome to the ghetto” - KB; so Dianne, what did you think? “Oh shit” -” oh, don't put that in there, put like 'shoot'” – (yah, whatever...) – “but kind of like oh, where are we, and what are we doing here”...ah yes Dianne, WELCOME to India, yet again! As for Kasie and me, we're definitely used to the place...it's becoming quite appealing, not. Seriously though, Kasie and I are SO used to India – well at least Delhi, we are really quite comfortable. If it weren't for the pollution, the overcrowding, the beggars, the smells, and the utter filth, I'd have to say we love it. Seriously, there is something about India that gets into you – at least for me (Kasie getting there I think)...despite all the hustle and bustle...there is also the calm and serene. And the people are so nice and genuinely caring and OMG patient like you wouldn't believe...guess you have to be when there's 13 + million people in the city.
Check-in, super smooth today, only a couple forms for Kasie to read and sign...huh, yeah read? not so much – well sign at least, “Sonia?” - “uh Kasie, even if it turns you blue, eh?” “No doubt...” Upstairs we go – to room 202 again...we like it, it's the larger room...more comfortable for the 3 of us to hang out in pre and post procedure since it's so roomy compared even to our room at Green Park...and we NOW know how to operate the air conditioner – a little rocket science required...but we're there now.
Dianne was wishing she brought something with her to keep herself entertained here; as I'm writing and setting up some photo files to make downloads easier if and when we ever get back to the internet access that will STAY connected – figuring I'll actually have to do the videos when I get back to the states and have high speed access...and Kasie is playing on her computer and of course has to spout off “didn't you get the memo...”, ah, well perhaps not...I guess at least Dianne's got the TV if she gets really bored.
Two sisters come into set up Kasie's IV, we remind them, NOT in the hand. Ok, no problem. Kasie, however starts to work herself up right away and that of course starts to snowball and she's almost panicking about how much it's GOING to hurt. Kasie, relax – they haven't even pricked you yet...you've got Ted, Marine Bunny and Lucky to keep you company....and holy cow you've got some grip – can I have my hand back, it's not that bad. They do get the IV in, first try – no problems; just above her wrist this time, not quite at the wrist where they did last time. Kasie begins complaining about it hurting too much and it's not right and that the needle is poking through, and that blood is coming out - “look you can see it”....hum, no Kasie, I'm calling you on this one...discomfort, yes I'm sure; poking through, no – I can see, or rather, I CANNOT see it poking through; blood coming out, well yes, that is where she drew back to make sure she was in your vein, nothing to worry about....RELAX girlfriend, it's not that bad and perhaps one day the indentations you left in my hand will go away. I still think it has to do with the stems cells making her hyper-sensitive to certain things and the fact that there is no topical anesthesia to just numb up the area a bit before they insert the IV. But she's still complaining...okay Kasie - relax – you have 2 options, either they redo it now...or you cowgirl up and see how it feels in a little bit and then if still a problem they can redo it, because yes it's going to be in for the full 3 days. Ah that's a good COWGIRL, I'm sure you'll be fine – because YOU KNOW if I didn't think so, I would have had them do something else...and besides Dr. Ashish and the anesthesiologist will double check it when you get to the OT, so let them know if it's still bothering you as much.
202pm she's off to the operating theater for her procedure. Opie – aren't you so proud of me, I'm not badgering you about going with her today, I didn't even ask to go.
Dianne and I had a great surprise for Kasie. We took the chair/bed and put it on the hospital bed. And Dianne DID bring a fitted sheet from home, an extra one in fact per our “wish list” of things for her to bring for Kasie. So we made up the bed for Kasie to to be more comfortable since she'd have to be immobile for so many sessions during the next 3 days.
3:26pm our girl returns...and I had just been commenting to Dianne that she was gone longer than the last two times...and they said this was only going to be a ½ hour and it's been a about 1 ½ now...Opie how did she do...”crying”...hmm really, “no, but she's a baby...REALLY? ah, he's just giving her a hard time...sort of. hey shift her to the bed, oh wait they notice that the bed is now MUCH higher, what's going on? We have to explain to them what we did and they seemed to be a little concerned that the sections would be a problem – uh, no...and oh is Kasie psyched, it is SO comfortable. Anyway, Opie tells me that she can't move until 7pm, then at 7pm she can roll over on her side and we can have the bricks taken out from under the bed (you know - the positional gadgets), and then at 730pm she can sit up. Also, she can't drink for 1 hour and she can't eat for 2 hours. Ok Opie – got it covered.
3:30pm sister comes in to check BP – Kasie, “are you serious, I've been here for like 2 minutes and they just did it downstairs”....uh, yeah, what I can't figure is 'why aren't you used to this yet?' Kasie, “What was it it 110/80”, sister – “yes”, Kasie – “yeah that's what it was 5 minutes ago....if I had a mood ring it would be neon black (blacklight) and it would stand for annoyed...” yeah, she's feeling fine...
“So Sonia, I have to tell you what happened before I forget - Dr. Ashish made sure he told me what he was doing so I could remember it to come and tell you....(ah, he's thinking, what a guy!). Ok, so he told me what he was going to do and then he had to take the tape off so he could put in the antibiotic for the IV, that's when they said I was being a baby – hurt like &#*@!. So let's see, then they rolled me on my side and then swabbed, swabbed, and swabbed some more my back, below the site of injury at about T10, T11, T12. Then they had me tuck my chin to my chest. And then he placed the stint at just below my level of injury and that 'felt' like bone popping, and I could hear it and my bladder was spasming a lot and so were my legs, and then they taped, and taped, and taped some more...and then rolled me back over...the tube runs up to a port up on the front of my right shoulder and then he injected like 3 or 4 syringes of stem cells into the port. Could feel it coming up my spine, and my abs felt so tight and my legs spasmed really stiff and freaking out – but in really good way, and it felt like someone was sitting on my chest. I could feel the injection going up as the stem cells traveled from the entrance point into my spine and up to about T7 where it stops. They were asking me if I was abouriuoi, WHAT, akjdfke, WHAT, athletic, OH,athletic, yes, ?why? - because most athletic type people don't complain about any pain or discomfort and I wasn't; but I wasn't afraid to whine about the IV hurting. Ok it MF hurts, I will give you an outline and everything of how it hurts. I'm glad I can't feel it, because I saw the needle, it's huge...seriously it's big, it's like a 14 gauge or 16 gauge needle, I don't know it's huge.”
Well, I think she covered it in her own words...
Dianne's surprised Kasie wasn't drained or anything. Actually Kasie is really perky...didn't have to have anesthesia today, that's a good thing. But of course she's pretty wired and is of course talking a mile a minute, go figure. Blah, blah, blah, and “FYI – I wasn't being a baby...and next time I'm going to have them give you and IV too...” Ah, whatever... Dianne heads back to Green Park around 5pm, not much else to do around here, she'll be back in the morning.
Oh, Geeta ordered a check on her UTI today...we're wonderin' when we'll get the results back, maybe when we get back to the states....find some monkey disease instead of ecoli...
Oh, yeah 530pm and our “boyfriend's” back – Dr. McDreamy...hello Kasie – show him you can move your toes. Excellent! Um, can you recommend a good restaurant...hey thanks...we are definitely ordering in.
556pm – sister knocking to see if the 'guy' can clean the room – no thanks, we're good. “What the frizzle, we've been here like 4 hours - KB”. Not sure what that was all about.
648pm – BP check
Hey, it is 648pm, where is dinner I ordered it like over an hour ago.
Now it's 705pm...and Kasie can roll over on her side...yahoo....got the guys to remove the bricks....oh and now dinner's here...delivered by a kid like all of 9 years old. The takeout containers here are a riot. The food – cheap, but really good in fact...we're psyched...Kasie having Chinese, I'm having Indian...wondering if Dianne actually got her dinner at Green Park...because before she left we had arranged to have her dinner at Green Park...and we said no dinner for us because we knew we were going to order in – no more hospital food thank you.
About 9pm Dr. Ashish came by to give her her injections into the the port actually stayed and talked to us for quite awhile as well. I really like how Dr. Ashish will actually talk to Kasie, not just to me as to what is going on with her. The patient interaction is really appealing, he has a great bedside manner and we both really appreciate that.
So she's good, comfortable and we watch a movie for the night and get to sleep around 1am.
DAY 27 - March 27, 2008 / THURSDAY
Today, another long day at the Gautam Nagar hospital.
Dr. Ashish was supposed to be there about 9am to give Kasie her injections into her port,, however he was running late and didn’t arrive until about 11:30am. Once he was there she had to get into a position where she could lie comfortably for 2 hours without moving…and that took a bit of doing. But finally she got comfy on her LEFT side, received the injections, and the ever so important positioning of the bed.
And then 2 hours of listening to music and a nap. Afterwards Kasie was able to be up and about, until the afternoon injection series.
The afternoon series of injections into her port required her to lie on her RIGHT side this time, again without moving for 2 hours.
All in all a long, boring and tedious day in the room and mostly in bed for our patient. So nothing really new and exciting to report.
Day 28 - March 28, 2008 / FRIDAY
Can you say more of the same…well that was today of course. Another long and uneventful day in ‘detention’.
Our excitement this morning was me washing Kasie’s hair since she couldn't just take a shower because the port on her back couldn’t get wet until Saturday night. Talk about pampered and spoiled
After that getting both of us fairly soaked, Kasie had a morning series of injections into her port. She then had to lie motionless, yet again, as best she could on her stomach for 2 hours. Yeah, not the easiest to find that comfortable position. Um, " move that pillow here, shift my legs there, oh no let’s try the pillows here"…but eventually she got herself situated.
Then once her two hours were up, she was able to again get up move about.
Her afternoon shot was at about 5pm and that one she actually got to stay upright in her chair.
Last injections for this 3 day procedure.And now finally they removed that IV line from her left arm, and boy was she relieved. Was it as simple as just pulling it out, why would you even think that. Of course there were some “issues” with the removal, but FINALLY it was out, hoorah!
About 7:30pm Dr. McDreamy removes the stint and tubing from her back.
About 8pm, they tell us our taxi is there and off just a little more paperwork, and away we go, back "home" to Green Park. Ah what a relief.
So once settled back in at Green Park, we ordered dinner in - Chinese for Kasie, Indian for me...oh Dianne you brave one...trying the the Mutton Curry from the hospital.
DAY 29 - March 29, 2008 / SATURDAY
I arrived from my hotel at about 745am. Dianne was in the lobby reading the paper and Kasie was in her room, sort of sleeping, but more realistically lounging about and avoiding getting out of bed. At about 8:45am she realized that she did indeed have PT this morning, and wasn't getting a reprieve simply because she was tired and had just had the 3 day procedure. But it was to be a light day of PT, so she dragged her butt out of bed and down to PT we went.
Sure enough, regular "light" leg, balance, and core strength exercises. But then of course was the re-match with Deepak.
Didn't go so well...
but maybe you need better background music, eh?Then they decided her spunky and scrappy attitude today meant they wanted to see her walk...
So first into bars and walking...then on to lateral movements
After PT, we spent some time hanging out around the hospital just relaxing...and then we went with a bunch of folks to Conaught Place - the CENTER of Delhi, and Janpath Market. Kasie was psyched because she got to ride in, as Marcia calls it a "tuck-tuck" as everyone else calls it, an auto-rickshaw. Sam and I rode with her, and Marcia, Dianne and Jacqui - as did her chair rode in a car, since it wouldn't fit in the "tuck-tuck". After some great bargains and the sheer FUN of haggling for things you don't need - it's a game for sure...and not everyone is a good player...but they're learning...with a little help from me and Sam - I think they're finally realizing there is NO way you should be paying "retail" here in India...we returned to Green Park. We gathered the rest of the floor and we all headed out for a dinner out together.
photo link is down - AGAIN...
Day 30 - March 30, 2008 / Sunday
Ah, my last day in India.
How depressing to be leaving Kasie. She and I did a little running around on our own today to just spend some time together and then we met up with Marcia and Dianne. Afterwards we returned to Green Park and I packed, we had dinner with Will and Marcia, I said my goodbyes to everyone and headed off to the airport.
Kasie - keep your chin up, you'll be great - only 5 more weeks.
CODivegirl |
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