Sunday, 27 January 2013

On the brink of Insanity!

Last year I had two very surreal moments when I feared for my sanity! The first one happened the first week of January, 2012. After two months of hell and suffering, I had finally managed to persuade a doctor to transfer Jack out of Aberdeen Sick Children's to Edinburgh Sick Children's Hospital.

We were due to be transferred on the Thursday morning so Wednesday was a day of tying up loose ends and packing up stuff.

One of the complaints I had made was re Jack's wheelchair. I had asked a nurse the very first week we had come into the hospital if she could ask someone from wheelchair services to come and have a look at Jack in his chair, as he was getting zero support due to the deterioration of his scoliosis. Every week that went by, I asked again and was fobbed off with many excuses so no one came to see us.

The day before our transfer, 8 weeks later, a nurse came over to tell us that she had phoned wheelchair services and the first available emergency appointment was in 6 weeks time!

It was the final straw for Granny Mac, who promptly burst into tears. As soon as she started to cry, I started laughing. I don't know who was more shocked, her or me! I laughed and laughed, til tears rolled down my face, my stomach ached and I thought I was going to be sick. I looked up in the middle of this hysteria to find the very bewildered faces of Granny Mac, the nurse and Val from Chas at Home looking at me like I had totally lost the plot!

The more Granny Mac cried, the harder I laughed. Through her tears she asked in a shocked voice "why are you laughing? Stop laughing, it's not funny!" This just made me howl with laughter all the more. I was totally creased up, bent double and was laughing so hard I literally couldn't breathe. Eventually I managed to splutter "you really need to stop crying cos the more you cry the more I laugh".

Even Jack thinks it's funny!

She looked incredulous at me as if I had gone mad! Then through her tears she went on a rant about how outrageous it was that an emergency appointment could take that long. This sent me into more bouts of hysterical laughter til I was a helpless, blubbering mess hanging onto the edge of Jack's bed.

I did manage in the middle to blurt out "if I had been given that appointment when we came in, I would have had it by now!" before dissolving into fits of giggles again.

I laughed like that for well over an hour and throughout the rest of the day, I would dissolve into fits of laughter for no reason whatsoever and at some of the most inappropriate times too.

Fast forward to June, when finally Jack has had his Fundoplication after two cancellations, been on continuous feed for 18 hours a day for 7 months, suffered a broken leg and severe oesophogitis, stopped breathing numerous times, suffered 100's of seizures, aspiration pneumonia twice and the countless other things that had happened in that 9 months. He was finally back to being fed into his stomach instead of  his jejunum and I had finally started to see the end of this nightmare.

After his fundoplication

After driving 4 hours to get home from the hospital I was shattered but happy to be home. Jack was still in plaster and his feeding peg was not yet a button but things were far far better.

Marion, Jack's carer was in looking after him so that Holly and I could have our tea. At 7pm we were getting him ready for bed. We had gotten most of his meds into him but when it came to putting in the last one, the peg was blocked! After trying to unblock it, I could feel the panic rising. We tried for over an hour to no avail; it was blocked solid.

I phoned Edinburgh for advice and the nurse told me to keep trying and call her back. I was shaking, crying and inconsolable. This was catastrophic because this was not a peg I could change myself and I had visions of having to get back into the car and drive the 4 hours back to Edinburgh. I kept saying to myself "no, no, no, no, no NO!" over and over. Poor Marion and Holly didn't know what to do with me so I asked Holly to call Granny Mac because in my mind, she was the only one who would understand what a disaster this truly was.

If it had been this type of peg, it wouldn't have been a problem cos I could have changed it myself!

We tried for another half hour after she arrived to unblock the damn peg! Everything we tried to flush down it, just exploded out of the other syringe portal. Marion, Jack and I were soaked. Granny Mac was trying to help but often just got in the way.  I felt like screaming! I lurched between crying hysterically and total silence! The only saving grace was that Jack slept through it all!

I called Edinburgh again and was told to take him to our local hospital. We had to hoist him back into his wheelchair and into the car. On the drive up, I was so distressed that I told Granny Mac exactly what I thought of her son, Father of the Year! I held nothing back. By the time we got up there, I couldn't breathe and was having chest pains. Poor Granny Mac was crying too as she just didn't know what to do with me

Marion met us up there and we went straight to the children's ward. We spent hours in the treatment room with numerous people trying to unblock that damn peg but it was not to be. The said we would probably have to go back to Edinburgh the next day and I told them "well you will have to take him, cos I am not going!". They tried numerous times to get a drip into him as well but his veins were crap which distressed me all the more. Bloody hell, had he not had enough? I cried most of that time with Marion getting permission to bring me cups of tea, which believe me, is NEVER allowed in the treatment room! Marion left at 11, three hours after her shift should have finished. It was her wedding anniversary too!

They managed to persuade me to sit in the parents room for a while but then they called me back because they needed to get a drip into Jack otherwise he would be dehydrated. Granny Mac was getting upset again so I knew that I was gonna have to pull up my big girl panties and just face it so back through I went. It was after midnight by then and I was rung out. I persuaded Granny Mac to call her husband and go home cos she looked as bad as me. Lynette stayed as she was going to be staying with Jack overnight. Just after 2 am we got Jack into a room on the ward. The drip was in but the peg was still blocked. I kissed him while he slept on, oblivious and went home.

I woke up the next day, feeling as if a huge weight was sitting on my chest. I ached everywhere. I rolled out of bed and saw that I had a text from Lynette saying that she wished she had good news to impart but that things were still the same.

I dragged myself up to hospital, resigned to the fact that I was probably having to drive back to Edinburgh.
Oh joy! But there was a glimmer of hope. A doctor was called and he said he probably could replace it, as it had been a week since it was put in so it should have healed and meshed now. I suggested he call the surgeon in Edinburgh to check just in case. He then spent the next hour trying to unblock the peg too, putting wire down it but the damn thing just wouldn't budge.

Granny Mac came to visit and the two of us sat with Jack.I apologised for losing it the night before and she said it was perfectly understandable!  Eventually at 1.30 pm the doctor appeared and changed the peg. When he took the blocked one out he showed us what was causing the blockage. There was a solid lump of white which turned out to be calcium, the supplement he was getting to help his broken leg heal! He had only been on it a week and a half but since it had been given with all his other meds, it had just slowly attached itself to everything until one day it became rock hard! Who'd have thought?

I was so relieved!

Ah happiness at last.....my old friend Red!

After I took Jack home, it took me weeks to recover from my melt down. I now know that it was the final straw after 9 months of hell and holding it together.

So please tell me I am not alone?







31 comments:

  1. You are the perfect example of "what doesn't kill you makes you stronger". You are one of the strongest people I know. With all you all went through in 2012, 2013 will have to be a banner good year! Please give a hug to your wonderful boy for me.

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    1. I definitely believe that! Just when you think you have used up all your reserves, you have to find more. I wasn't born this strong, necessity has made it happen. I gave Jack a big hug from you and he laughed, cheeky wee monkey!x

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  2. I think that what you posted was actually very reasonable.
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    My blog ... kumpulan

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  3. No Lynne, you are not alone. I terrify myself and others around me when i start to cry - because that means i am really at rock bottom and i cannot see a way back up. I'm always in fear of getting left at the bottom of that big dark hole with no parole or get of jail free card.

    Usually i have Boudica, Attila the Hun and Ghengis Khan terrified, but there are time...............

    And if we don't laugh, sweetie, we cry.

    What good would that be to our boys and the others around us?

    Onwards and upwards - tomorrow is another day!

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    1. Julie, I know when I am crying and just can't stop it's because I have reached that dark place where I just want to curl up in a ball and just be.

      What keeps me going is that I know, only too well, that it could be so much worse ie: I didn't have him at all!

      That's why I try to see the funny side as much as possible cos lets face it, one day that very dark place will come :)

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    2. Indeed - what would life be like with without Jack or Peter.
      As i said to my cousin's wife last week - Peter may live in a little world of his own, but you know what - it's a nice world, i get to be in it and if he's happy, so am i

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  4. You are not alone. My eyes are wet with tears just reading this, but seeing your happy face at the end with a well-deserved glass of red is the perfect ending.

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    1. Kath, I know you were with me, going through it, if it made you cry. As for the red wine....at times, it is my life line! Plus I couldn't leave you crying, I had to make you smile!

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  5. Hi Lynne. I honestly don't know what to say after reading all that turmoil you had to go through back then. I just really pray that it never gets that bad again for you or your gorgeous Jack. It's a wonder you haven't lost the plot completely before now. What an amazing mum you are. I'm so glad that granny mac is still there for you both, in spite of her son! Hugs to you.

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    1. I hope it never gets that bad again but I am under no illusions as basically I am on an never ending roller coaster ride with my boyo. Yes Granny Mac knows that is son isn't the man she thought he was cos he has proved that to her but in the end, blood is thicker than water :)Hugs to you too xxx

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  6. You are certainly not alone if it is friends who love and admire you -there are oodles of those here, and I am leading the pack holding hands, via blogging, with all of them, cheering you, Jack and Holly on, praying our most heartfelt thoughts that something, sometime [ALL things, ALL the time actually] go right and easy for your family and you. It is distressing to witness what you all have to endure, the frustration, the pain, the anger and sorrow. I do not know how you do it, but you do, amazingly, with a smile, a laugh and the strength of 100 women. I have never met anyone like you Lyndy. It's hard to explain, but I know that I would've given up a long time ago, not because I don't love my children, you know I do, but I don't think I have the mental stamina to deal with the STUPIDITY and harmful [to Jack] way these supposed "professionals" with their degrees and letters after their name treat you and especially your song. I would've tossed up my hands after a few years and said "HERE. YOU think YOU can do it BEST? HAVE AT IT." Then they would be begging for me to come back [if I was even a bit like you] because they would know I [you] could do it best. He is YOUR son, and I don't know how they haven't realized how this effects you and all the others, his sister, grandma, friends that see him IRL. They are FREAKING BLIND [and like I said stupid] treating Jack and you in this manner. A wheelchair, a WORKING wheelchair isn't a want, a "oh, wouldn't that make life easier" sort of apparatus, but a TRUE and urgent need. They might as well told you it would take 6 weeks to set his leg when he broke it, that being every bit as absurd as saying it's six weeks until he gets his chair looked at. Not to mention the calcium blockage they should've forwarned you of and they should realize that the amount of driving you have to do, just for an appointment adds to an already stressful life when your son is chronically ill.
    Yeesh, that was wordy [when aren't I? hee, and it probably doesn't make a lick of sense - but I just want you to know that although not a one of us has been through so many years of the pain and heartache you have, we ARE here in spirit and interwebs ::wink:: hugging you and wishing we were there to help you. I promise.
    As I have said, it may sound hollow, being a couple of typed sentences on a green page, but please know I mean every single word from my heart. People think I have strength dealing with my own personal illness, but it is ZIP compared to the strength your son has everyday and he could only gain that by having a Mother, whose love and own strength truly keep him alive. I am a Mom too and I don't know, honestly know, if I could do what you do. I have a breaking point and as yours is non existent it seems, mine is growing a bit closer to the surface every day. I don't know how you do it, but I wish I had an ounce of strength. Oh, and a little bit of your good looks would be nice too. [GREAT PIC' btw]

    And a little off topic, but since I mentioned your pic' I would be remiss if I didn't tell you what I thought everytime I see a pic' of Jack - besides the fact that he is one of the most handsome young men of all my friends' kids [including mine] but I have wanted to ask you - how big a flirt is he? He just looks like he is a bit mischievous with that smile and his dark hair and eyes. It always makes me smile seeing him smile, because as with all boys [and with a Mom and a sister to egg him on I am sure giggle] they are always up to something behind that "innocent" look. Y'know?

    Okay - I best get off. I haven't slept myself in a ...well, a while and I almost fell asleep during Mass. oops - so I best get a nap now while my head is telling me to sleep and my body finally wants to follow it's lead.

    I meant everything I said, and then some. Love always xo S

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    1. Skippy your words mean so much to me. You are my biggest champion, truly. I really appreciate you taking the time to write when you, yourself, are struggling daily. Big big hugs.

      As for Jack, yes he truly is the biggest flirt EVER! He just knows how to melt a heart but he also knows how to withhold it and make you work for it too....and boy do I work for a smile or even a kiss!

      And those chocolate brown eyes, I just have to look into them and I am gone. I so love love love that boy.

      Keep well and smiling my friend. Love ya xxxx

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  7. You are not alone. But you ARE one of the bravest and most inspirational women I know xx

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    1. Wow! Thank you but you are equally the same to me x

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  8. You are not alone. Sometimes you just need to release your emotions however they choose to come out. I laugh at things other people think are not funny, and then sometimes I cry and can't stop for the longest time. Shit happens. Better to let it out than keep it all bottled up and turn into a turd.

    Love,
    Janie

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    1. Oh Janie I laughed so hard at your comment about turning into a "turd". Thanks for making me smile :)

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  9. Never alone...I have this thing with my family...when things are getting stressful and I'm going through tuff stuff I say, "Don't be nice to me". I can get through it all unless someone starts being all oh poor thing etc.
    Glad you got stuff off your chest...I'm sure it needed to be said, just too bad its wasn't Jack's Dad that would have been really the best!
    Hugs to you dear heart...you amaze the world!

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    1. I know exactly what you mean. I say the same thing to people. I was sorry that Granny Mac got the crap but since Father of the Year is only in the country about a month every year, I never get the opportunity to tell him that there is much more to being a father than paying maintenance! She totally understood as I rarely say anything so she knew it was out of character :) (((hugs))) to you too Sush xxx

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  10. No not alone. You are an amazing woman and sometimes, if you dont laugh, you cry. And laughing releases feel good stuff, which probably gives you the strength to keep going regardless

    Big hugs

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    1. Laughing really is the best medicine. I prefer to do that but sometimes it's just not possible. xxx

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  11. Dear Lady,

    You are the strongest person of either gender I know of.

    Know this: You will never be alone. Read the 23d Psalm whenever you feel that you are.

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    1. Thank you Don. I will look that up x

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  12. Oh Lynne, you have been through SO much in the past few months (and years!) I was laughing and crying with you reading this! I do hope things have settled somewhat. Your jack is gorgeous, love that smiley photo of him! He's very like you I think.

    I am so glad that you have such good friends around you to lean on..... especially red ;-)

    Take care

    ((xx)) Jazzy

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    1. Yes things have settled :) Jack has a beautiful smile and you are not the first one to say he looks like me.

      Friends are my lifeline and friends who bring some red are even better! x

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  13. Nope, you are never alone! Trust me when I say I think we've all had a melt down such as you've described. Different situations maybe, but the stress levels/craziness were sky high!

    And now all these months later, do you feel better putting it down in print? Kind of work it out, how all the shit happened? I know I do.

    Happy life has taken a good turn for you all.

    Is Holly back to school yet? My boy just left on Saturday- ugh..

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    1. Yes it feels great having written it down. Writing is definitely my version of therapy!

      Holly went back to Uni last week....it totally sucks! Never mind, onwards and upwards eh?

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  14. Dearest Lyndylou,
    Wow!!! I can never imagine what you have been through, dear greatest mother. These hardships won't be able to feel to yourself unless it happens personally to you. The last paragraph have really touched me to read the perfect way to express your situation☆☆☆
    All my prayers for Jack and all of your family from Japan; I DO hope you can have blessed year 2013!!!

    Love you always from Japan, xoxo Miyako*

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    1. Thank you Yamada for your prayers and thoughts. Love to you too xxx

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  15. You are absolutely not alone! X and the meltdowns are necessary so I that you can function the rest of the time x

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    1. So true but you just feel totally wiped after, not a good feeling :(

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Laughter is the best medicine and it's free. Thanks for visiting my blog and I look forward to hearing from you.

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