Wednesday, 15 January 2014

You only get what you can cope with..........what a crock of shit!

Since my last post, my life got a little crazier, surprisingly...NOT!

Jack and I were due in Rachel House for a few days from the 18th November. He had been unwell previously, was still a bit chesty and had just finished another dose of antibiotics.

The first night, I was called by the hospice staff as he wasn't breathing very well.

I came downstairs thinking it was more of his noisy obstructive breathing but no, he wasn't breathing much at all and not even trying to, which was ten times more scary. His lips and skin were a dusky colour which meant he wasn't getting enough oxygen. We changed his position in the bed a couple of times to open up his airway and roused him from sleep and he started to take deeper breaths therefore improving his colour. Phew!

Once he was a better colour I went back to bed and the hospice staff assured me they would sit by his bedside the rest of the night.

The next day, all seemed well until around 11.30 am when he had another episode of not breathing and looking dusky. His neck collar wasn't doing anything to help so the hospice doctor was bleeped to come and have a look at him.

Meanwhile, Holly and her friend Georgia were on the bus from Edinburgh coming for a visit so I had to nip out and pick them up. When we arrived back the doctor had been to see Jack and was coming back for a chat with me. It was decided to give the hospital a ring, as Jack's chest sounded clear and there seemed to be no reason for these episodes. He was back shortly to say they were sending an ambulance for Jack.

As I was the only one who could drive,  Holly went in the ambulance with Jack and Georgia and I followed behind with all Jack's stuff.

We spent 5 hours in A & E and were eventually transferred to the Respiratory Ward just after 8 pm. Jack seemed to go a bit downhill when we reached the hospital, having seizures and producing lots of saliva which he was then swallowing! His chest was getting quite rattly so I had a feeling he wasn't going to have a great night.

This photo says it all

The next day when we arrived back at the hospital they had put an airway into his nose as he was having such bad episodes of obstructive breathing. He also had two bugs in his chest...he really is a greedy boy!

It was a hard two weeks, during which it was decided that he would need the NP airway in on a permanent basis. Holly and I were quite distraught about this as it wasn't the most discreet looking thing and it spread out from his nose across his cheeks, covering most of his beautiful face.

Jack, though, had other ideas! Due to the bugs in his chest, it kept getting blocked and required regular changing which turned out to be an ordeal for all involved as he fought them and even learned to use his tongue to block it. My boy is so clever! As if that wasn't enough to contend with they could only get it down one nostril as the other one had a little kink in it making it extremely difficult to pass a tube down.

At the end of the two weeks, I told the consultant that this really wasn't working and could we go onto Plan B, whatever that was but I had a fair idea.

Trying on my new hat....he was not amused! He reminded me of the Grinch! So cute

We had a meeting shortly after. Plan B was CPAP which I kind of expected and about an hour later, we tried it while he was quite calm and awake. He didn't even struggle, which nearly broke my heart and once the mask was in place, machine switched on, he just rolled towards me for reassurance and I hugged him. He tolerated it for 30 mins lying in my arms. The respiratory nurse, Linda, was so impressed with him, he was such a star. Apparently it can take months for kids to get used to it.

That's the way with Jack, he knows when he needs something, so he doesn't fight it.

The best bit of all was he only has to use it at night so less invasive than the NP airway. The consultant said that it would take a week for Jack to get used to the cpap machine and for me to be trained. So my goal was a week from that day and we weren't going to stay a day longer!

After 3 weeks in hospital we managed to get home. Jack was very tired so I kept him off school. The first week home was a bit hectic with lots of phone calls, appointments etc. We popped into school for a morning and he was able to take part in his play, much to his disgust, which made Holly and I fall about laughing!

Unfortunately we missed out on respite and our other dates at Rachel House but to be honest, I felt home was the best place for us.

I managed to get out for the day with Tori (my new student) and although the weather was pretty dire, we managed to visit the Highland Wildlife Park where we had a stand off with two Bison who stood in the middle of the road and were refusing to budge! Intimidating but hilarious.

That same night, after we got home, Kathy surprised me with a visit. I had no idea she and the kids were coming but it made me cry! Holly arrived home in the early hours of the Sunday morning too, so my weekend was complete.

Christmas was hectic. The house looked like a winter wonderland by the time Holly, Tori and I were finished!

Jack seems to like the tree

Even the dogs were decorated!

Tori decorating Jack's hoist

Holly with her favourite girls

My dad was coming for Christmas so Holly and I had a baking frenzy on Christmas Eve whilst Marion the carer was in. The two of us haven't baked for years. It was loads of fun. My Dad stayed over for two days and we had such a great time, he is still talking about it today.

Jack slept through most of Christmas Day but came to life around 5 pm so we grabbed that window of opportunity and there was a chaotic hour of present opening til he got fed up. He got loads of tactile stuff that either had flashing lights, squeaked or just felt nice.

He was just too tired and wanted to be left alone

Holly got loads of goodies, her favourite being the Alice In Wonderland bag that was made for her by the lovely lady at Big Daisy Kiss Boutique. She has been desperate for one so I thought it would be a lovely surprise.

Speaking of surprises, Holly and her friend Georgia secretly bought me a present and organized friends and family to contribute to the buying of it over a period of 3 months. She managed to get it home as well, all without me seeing it. Her only comment about it was "you know mum, you have some really really good friends and you are well loved, that's all I am going to say!".

This represents the three of us!

It's a Jennifer Hogwood original and I just LOVE it!

He was a happier boy later in the day

New Year's Eve was a bit eventful. Jack had to have rescue meds after having 4 seizures in 5 minutes so he was totally out of it for the rest of the day. Holly had been unwell since she got home so she took to her bed in the early evening too. It was a crap day all round!

Now though it is 2014 and I am looking ahead to a new year.

This year Holly will be 20 and Jack will be 16...eek! Surely I am not old enough to have kiddies that age? Where has the time gone?

Jack's National Insurance number came in this week which means he can now officially get a job.  Holly and I had such a laugh coming up with the ideal job for him.

We both think that he would be ideal as a tester of toys! He is so rough with his; dropping them, rolling on them, bursting them etc so any toy that could withstand the "Jack treatment" would pass the grade! He would be brilliant at it! Hee hee hee.

Holly also suggested he would be great as a tester of special needs equipment cos I am sure they test most equipment with someone who just lies very still! Jack, who wriggles about all the time seriously puts his equipment through a punishing regime on a daily basis!

So it looks like my boy might have to start earning his keep when times get hard! Now that would be something eh?


  1. Onwards Lynne.
    It's a New Year, so lets see what it brings - hopefully good things

  2. Love you all Lynne, thinking of you and Jack every day (I don't have to think about Holly obviously - I live with her!) <3 xxx

  3. You, Jack and Holly have certainly had a year, haven't you? God bless you all as you smile through it. I don't know how you do, but I am sure the deep love and great humor helps, doesn't it?

    My favorite saying is "Whatever doesn't kill me.....had better start running." Makes me laugh because if God is giving me only what I can handle he must think I am quite the badass. Just like my Lynnie. Love you all. Thank you. For you.

  4. I hope and pray 2014 is a year of amazingly good things for you and your beautiful family. What great Christmas pics! Love to you all~

  5. I'm finding it hard to find just the right thing to say. I have so many things that I feel…awe, inspired, anger you all have to endure this. Mostly I guess I just want to say you all are always in my thoughts and prayers and I think you and your family are just a great testament of love. Big hugs, much love!

  6. I'm so sorry. I have tears in my eyes, and I don't cry very often. God bless you all.


  7. I have no idea how you do it but you just do. Your family is so beautiful and the love you have for each other just shines from each photo.
    I am happy you had a lovely Christmas and wish you easier times for this new year.
    Sending hugs xx

  8. Onwards and upwards dear Lynne. What a year you all had. I really do pray that 2014 will be kinder to all of you, as I know that Holly suffers as well. I pray that He will give you the strength to keep going amidst all your trials and tribulations with looking after that gorgeous boy of yours. Lovely photos today. What a fabulous pressie you had - no-one deserves something special more than you. We all have such huge admiration for you. Hugs x

  9. Here's to 2014 and that it's way less shit than 2013 has been for you 3 xxx

  10. I hope 2014 is a much better year for all of you :) I love the decorated hoist, must try that here :) And I've had the same thoughts about jobs for my special girl - she's going to be an A&R woman - if she likes a song, it's definitely going to be a hit!

  11. What a close to the year for the family. Hope 2014 is wonderful for you all! Take care

  12. I hope 2014 brings good fortune for you guys,,

    Thanks for sharing with us ,, :)


  13. Just popping into say hi, I havent been blogging for tends to get in the way,hey. I hope things aren't as hectic. Love the pics of jack above , cute kid, can't beleive nearly 16!! and Holly 20? where does the time go. I just got another grandchild!!! Hope you are well and not run ragged. would love to hear from you again xx


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