It's all been too much today.......I want to close my eyes and forget about all that makes my heart so heavy. Hopefully tomorrow will be a new day. Thank you all for being there for me when it all gets too much. You all are my cathartic release. It makes a difference to know there's someone out there listening. Xx
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Our boy has not had a good day, he's continuing to battle sky high strep levels, and these are now taking their toll. Our treatment plan is progressing but it takes time. We should be used to this now because PANDAS = waiting. He's been so distressed all day, and his distress has really highlighted to me today the difficulties he has. It was 3 very ordinary & everyday tasks/conversations that put him into a spiral. Unfortunately we are still out of our house, the repairs will take another 5 weeks at least. However, our temporary accommodation is full this weekend with prior bookings so we've had to pack everything up and move out (AGAIN - I'm a pro now!! Lol) however he has not handled this well. We have come to the cottage for the weekend. Arrival at the cottage, brought another crisis that broke the camel's back. As he sat with his head in his hands sobbing, I just looked at him, so frightened, confused and distressed, and I honestly felt physical pain...... Because we have got used to adapting our daily lives to coping with PANDAS, (what we can & can't do. Where we can and can't go. What we know he'll cope with and what he won't) you get led into a sense of false security. Then, when things crop up that you have to deal with (I'm talking everyday things you take for granted that we try to stay clear off as much as possible), as much as you try to approach them cautiously, trying to protect him, it's not always possible. For example, his brain sequencing has been badly affected by his brain injury, some of the tasks he has great difficulty with are - he cannot put clothes on a hanger, fold them or pick clothes out. Attempting any of these will put him in a terrible state. We have installed a bookcase in his room where his clothes can be kept so he doesn't have to use the wardrobe or drawers. Even when he's having a good day, I'll say to him do you want to pack your bag for Nana's? Thinking, he's having a good day, he'll manage it. However minutes later, he's in a terrible state, I'm unable to calm him and he's either punching me, heading for the knife drawer or trying to throw himself down the stairs......... Today's 3 triggers were 1. A conversation about organising my birthday present. 2. Choosing & packing clothes for the cottage. 3. The grass at the cottage being waist high. It would take you to see the sheer panic, fear, distress & pain that these 3 situations created for him, before you would believe it. Unfortunately, after the 3rd crisis, he's started to become physically aggressive and I had to sedate him........ this is the point of no return, he's too big now for me to restrain him on my own and I have Annie to consider so it's my only option. I honestly don't know how we would manage him without the drug regime he's on......... "My everyday life with PANDAS" xx I've just got my wee man settled, after administering more medication and sponging him down. His head continues to be sore so I'll contact the docs at neurology tomorrow and see what they say. Thank you for your prayers. Xx It would be really good to get some prayers for our boy tonight. He's in a terrible lot of pain, he can't keep his head up because there is so much pressure in it, he feels it's going to explode and he's too weak to walk because of the pain in his legs and feet. He's running a low grade fever. It's not possible to give him his sedation in this situation because I need to monitor him. It's very possible we'll head to Children's Casualty in the next couple of hours. I'll keep the blog updated. Xx At the European PANDAS Conference - Immersed in a huge caldron of PANDAS knowledge, listening to the leading doctors on this condition including the lady who discovered PANDAS, Dr Sue Suedo. After the roughest week we've had in quite some time, including our precious boy being in such a state of distress he tried to open the door to get out of a moving car. He is having a very good day, we have had a lovely laughter filled couple of hours at Pickie Park Bangor and now catching a bite to eat in Cafe Brazilia. It should not be underestimated what an achievement this is for Cameron, it seems ordinary enough but for him a trip out like this is filled with mine fields and hidden distress. It will take a lot out of him as he's very sore physically at the minute, but his laughter & enjoyment is lovely to see. Very thankful for a family afternoons like this, God Willing we are granted them more frequently as Cameron's health improves I'm wound like a tight coil today, feeling very stressed. Cameron is finding everything such a struggle today, it's all so intense, it's exhausting! Words that pop to mind today - overwhelming. Daunted. Drowning. Tired. So the outcome of falling asleep on the bed at 6.30pm and not waking till 12 midnight on Jonathan's night off? Everyone's now fast asleep and I'm up half the night composing and updating word documents & sending the latest list of email correspondence to doctors, clinics & folk in Oklahoma, New Jersey, Toronto, Italy, Dublin, Galway, Belfast Royal Children's hospital and templepatrick!! Reading this causes physical pain in my heart as I scan the lines thinking the author is reading my thoughts xx We survived the trans Atlantic crossing! Just!! We welcomed the sight of the special assistance Omniserv team at Heathrow with open arms! They really show up their colleagues in other airports with their first class care. As usual they came on to the plane to get us and made our transition through the airport stress free. Cameron is quite volatile, he's in the seat and buckled in, which is progress! Now waiting to take off for good old Ulster. Roll on home - family reunion at the airport & then off to our temporary accommodation to sleep off the jet lag, before picking myself up and getting on the ball with the next stage of treatment. Dr T & I have already got things underway and I'm eager to get things moving. |
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December 2015
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