Bed Sores and Pressure Sores

2 days back I checked Vin's back (as I always do- its become a habit now), and to my utter dismay found a small round bruise just below his SB site. For half a minute, all the memories associated with his previous sores came back. First I scolded him for not taking note of his back and then I thought why does it always happen in winter when the sore would take longer to heal due to layers of clothing . Then I told Vineet- We both can make it right, only you have to help me.ok? And he nodded his head in affirmation. Now I have to personally take charge of changing his diapers once in the morning before going to school and then again in the evening after lunch. But the very next day when I came home from work, I saw that it had increased in size.My daughter told me that he had acted naughty with her and the maid and had lied on it. I am at my wits' end. Now Vin has to turn around 6 times while wearing his pants- twice for the diaper and 4 times for the pants.Its going to be worse when winter sets in properly and he will have to wear warm inners along with his pants.

WHY DOES IT HAPPEN  
Well, Vin's backbone is curved right in the middle - his SB site. It is called SCOLIOSIS. So it is prone to scraping and bruising. The dry winter makes the thin skin over it easily breakable. The tumour did not have a skin in the begining at all. The Doctors took skin from elsewhere and and grafted onto it. I don't know if they could have done a better job or not, but its quite unsatisfactory for me.....



PREVIOUS HISTORY


Vin had his first back sore when he was in Prep school at the age of  4 (?). He had come back one day from school and there was this small round wound and at that point I didn't know what to do. We took him to the Doctor who prescribed an antibiotic cream and another one. It took a very long time to heal is all I remember. Then it happened again and this time we used a particular ointment that a Doc had prescribed to heal Vin's burnt feet (he had accidently gone on a bike ride without his shoes in our absence, and the exhaust cylinders had burnt his feet), and it worked just fine. Then happened the Third sore and it took our patience away - it stayed for a year and half!!! We tried every possible kind of treatment, but nothing would work! It healed only when we went to Vellore in 2007, and the Doc told us - Keep the wound moisturised with ointment or coconut oil and leave it open all the time. It was the month of June- July (rainy season with high humidity) and when we returned from CMC, Vellore, I followed the Doc's advice and BELIEVE IT OR NOT, the bedsore healed exactly within a month!!!!

So last year when he had a small one again, it healed after 2 months(I think), because of the winter clothing. And now this.......

 

 (I AM WAITING EAGERLY FOR VIN TO TURN 18 SO WE CAN HAVE HIS BACK SURGERY AND IT CAN TAKE CARE OF A LOT OF PROBLEMS......and then the Doc has also told us thats its going to be a MAJOR  RISKY Surgery and Vin will have to stay in bed for 6 months!!! :(((( Its certainly a big price to pay for.....for what?? 'HIGH ESTEEM' , as an SB gentleman, aged 40 or so said in an SB Group.....)

 

I would like to share this link with all SB-associated people. Have a look-

 

Phenix Rod

 

 

 

PRESSURE   SORE now I think that a pressure sore is different from a bed sore, or is it?? Well actually I want to talk here about this particular clot I noticed on Vin's soles in the right leg sometime last year. At first I thought that it was because of his new AFO's that we had just got for him. I thought that the cast had been defective. So I stopped putting them on. But it stayed on and at times it used to go very dark. Then I noticed that when I was putting him to sleep on his left side, the right leg's feet was tilted at an angle so that the heel's position stayed in the same position till he turned around later in the night. I wasn't sure about this being the reason , so I discussed with my brother who is a Doctor, and he said 'Try putting a pillow under his legs and see what happens. See if it improves..". I tried it, and within a week the clot had turned pale and I could see colour returning there :)))  I AM A HAPPY MOM NOW!!!

 

 



About Wheelchairs

Suddenly I find FOUR wheelchairs in my house - of different sizes , colours and make, of course. I keep shuffling them according to 'when' they are needed, and the living room sometimes resembles a parking lot! LOL! So as the story goes, Vin had his first wheelchair when he was about 5 years old. It looked like this

Vineet's First wheelchair (2004)

 

I had cried when it first rolled into our home..it tore my heart,but, of course. But for Vin, it was like a 4 wheeled car! He could not wheel it, but it was enough for him that he could be moved around everywhere. It was the Best option we had in the year 2004, because it was the only one which had the smallest rear wheels.We couldn't be bothered about the front wheels as such... We hardly knew anything about wheelchairs!! It was bought from a shop in Kolkata's Chittaranjan Avenue -its a very long road with Medical Equipment shops on both sides. My daughter Vinisha was just born, and must have been a few months old when I had gone with my husband to check out the wheelchairs there. We ordered this one for the seat dimensions,etc, and since we wanted a foldable one with built-in potty, they said it would take them some time for them to deliver. So Vin's papa went and got it some days later when it was ready. It was made totally of iron pipes, and as we realised later, the foldable part was hardly of any use - it got jammed because of the iron nuts and bolts :( Vin had already made it apparent by then that his favourite colour was 'green'. So I painted the wheelchair green(all by myself, of course, haha), coz the silver looked a bit sickly for a vibrant kid like my Vin :) So now it looked like this

 

Phew! It was hard work!!

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WHEELCHAIR NO.2    

 

 

 

 Errrrr...wheelchair no 2 was hardly ever used. It was totally miscalculated because we thought that with small wheels, Vin could not reach the wheels and wheel it himself, so let us get him one with big wheels with small dimensions.(By now, the shop was ready to make custom-made ones for us - It was a great thing for us back then...) So now we had big rear wheels, Vin's seat size, a little bit bigger front wheels, etc. Vin's dad had gone to order for this one, I made the dimensions myself, but when it came down home, it was a total failure :(  It was just TOO HIGH. We used it for school when Vin started school in April 2005,but when the third wheelchair came over in Feb 2006 , we kept it aside for emergencies as the first one was getting old now. We began our hunt for another decent one as Vin was now was going to start regular school. This wheelchair stayed with us for some time - sometimes people borrowed it for use(say broken legs, etc) , and in the end we donated it to someone needy. I have very few pictures of it. This is one of them

 

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WHEELCHAIR NO. 3   

 Aaaahhh!! What can I say about Wheelchair no 3...I just LOVE it...and so does Vin. One day I noticed an ad about wheelchairs in a small column of our newspaper. I don't remember if they mentioned anything special, because the next moment we had called them up and asked about their address in Kolkata. The person in -charge told us that his agency had acquired some imported wheelchairs from Germany(?) and we could have a look. He told us they cost around Rupees Seven Thousand - a very big amount for us those days...(the iron ones cost only Rupees One thousand eight hundred back then!!) but we still wanted to have a look.
So it was a sort of a warehouse in Kolkata's narrow lanes and the moment my husband saw it, he knew this was the one. But I was a little sceptical about the seat size- it was an adult size, but the gentleman was very very kind enough to call over his own son who was younger than Vineet, and showed us that even he could move it around. As we discussed, the gentleman and Vin's papa got an idea- the foldable wheels could be fixed with velcro straps and not opened fully.Then the adjustable rexine-leather seat and backrest could be folded inside. Of course that would make it a little bit higher, but otherwise, it was Super. The wheels just glided so smoothly and they had tyres you didn't need to pump air into- rubberised I think. Everything about it was just so fine. We were happy except the price part, but we had to invest in this one. It looks like this- we have not put the foot-rest because it was too low for Vin's feet and it was non-adjustable. We would have to find a way to put something there....

The pic date says 28th Feb 2006, at 7.11.a.m.
I think it came a day earlier and this was the first day of school when Vin went with it? But maybe not, as I see that the seat and backrest have been adjusted for Vin and the wheelchair is a little high. Oh! I don't seem to recollect...old age duh! So he was just finishing Kindergarten and about to go to Class I. About the footrest now, it had a clip-in system which was super, but not working for Vin as of now. So we got an iron-welder to fix  iron grooves on both sides like the one he had for his old ones, and put in one of the old footrest.We could put in only one of them because they were big and the breadth of this wheelchair was small.Both wouldn't fit together. It worked somehow...though I was always unsatisfied about this factor, but then we couldn't find any other way....Its the one we take for journeys and outings because because of its big front wheels,it easier to move about. Plus it just snaps shut with a raise of the finger!!:)

Touchwood, its still the BEST we have had till now..as if its blessed by GOD himself. Thankyou Jesus! Praise you Jesus! Its one of the many miracles we have witnessed in the path with Vineet...
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WHEELCHAIR NO  4     



 By now the first potty wheelchair was in bad shape and we needed another potty wheelchair for the house. So off we went to our favourite shop on Chittaranjan Avenue and ordered another one with our own dimensions for Vin. Oh what Super luck this time- it turned out just so fine and right in all ways.The arm-rests were lower as was the back rest.The arm rest was just about enough for a cardboard to be rested on it, so Vin could have meals by himself and even do some home work on it! Super!! :))

I see fotos of it as early as 30th April 2007. Although its potty is no more in use, Vin still finds it most comfortable for meals.
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WHEELCHAIR NO 5       



 Aahhh!!! What can I say about wheelchair no 5 ..... ITS AMERICAN!!!!! LOL!!! I'm laughing with pure joy because never in my wildest dreams did I imagine that Vin would be able to have one of those wheelchairs that looked SO damn Fabulous on the internet. Its a Quickie G T i and I had known about it from various places and SB Groups on the internet even before this one came. Now that I am writing about it, I feel it was a dream of sorts - the homecoming :)
Maria Linny is my messenger from God - she's been sent to help me and Vin in all our difficult times...I became friends with her on the net via the Spina bifida group that I have made on ORKUT. I shall have to have a seperate place for her here later I realise now. Coz Vin's journey is incomplete without me telling you about Linny (hugs for you Linny). So Linny was coming down to India in June 2009 and was bringing down her daughter Teena's extra wheelchair which was battery-operated. I couldn't believe my ears when I heard about it. She was coming down to Bangalore and we decided we would meet there. It was so un-imaginable that someone whom I had never met in my whole life was taking all the trouble to get a wheelchair with batteries and two sets of wheels, all the way from USA. Till the time we both met in Bangalore, both our husbands were so sceptical about the whole episode! haha! They kept phoning each other up to ensure it was actually happening!! But then miracles do happen....

It has jazzy light-up front wheels (which amaze people here all the time :), a pair of back-wheels for support and to avoid toppling , detachable armrests and everything about it so USA-made. He removes the armrests when he's practising his Octapad. I sometimes can't believe there ARE people who make a wheelchair so lovingly....So one set of wheels can be 'hand-pushed', while the other has batteries attached. So even at the slightest push, it can go faster than hands.Now Vin got a scare the first time when he sat on it in Bangalore with the battery-wheels,so he's still afraid to try them out, but the hand-driven ones are his favourite as of now.He can even play cricket on it!! :) Yes, we have to pump air sometimes. The footrest was high with the 'pressure-seat' Linny gave us, and low without it. So now we have our own-made cushion seat for him. I decorated it with white ribbons for Vineet's First Holy Communion in 2010. :)

            14th November 2010

WHEELCHAIR NO 6        





Now Vineet's second potty wheelchair (the comfortable home one) was getting old and rusty. So we had to get him a new one. Now inspite of me tediously taking measurements, Vin's papa tediously taking it down on the phone, and ordering it , it came with one disaster - high armrest. In fact too high an armrest. Now Vin does not want to let go of his 'comfy-wheelchair'.


SO THAT IS HOW THERE ARE 4 wheelchairs in my living room!!! Hahaha!! Not that I mind at all ;P Its good for the other kids of the house who sometimes like to race!!

(A small note-
And now I have my eyes on the 'beach' wheelchair wheels. Recently I was going through my old saved fotos and I came across fotos of beach wheelchairs. It looks like this-

Most of them were motorised and out of reach for us. I thought let me see if there have been any new improvements in them. I googled and saw some videos ,and then I came across this site-
CLICK HERE FOR THE LINK TO THE WEBSITE HOTSHOT PRODUCTS

This guy Hank is good coz he's given the option to just change the normal tyres of a normal wheelchair into balloon tyres with the help of some attachments at a price we can afford. I'm very very keen to proceed into this thing because our family loves the beach and so does Vin. In fact he's told me -Lets go to Goa again!! So I have told my dear friend Linny to look into it, and of course she too is working on it :) Love you Linny!