Saturday, 31 December 2011

Goodbye 2011, I didn't like you very much!

Greeting my little gigglers. As 2011 draws to a close, I am still in the hospital with Jack. As I said before, this time last year, Jack had been rushed to hospital after having a 22 minute seizure and spent New Year's Eve in hospital and most of New Year's Day.

Little did I know at that time, that we would end the year by being in the hospital, after a period of 3 months. The start of month 4 is tomorrow.
Christmas day. Jack's getting a cuddle from his new  panda bear
I am struggling now if I am honest. I struggle to sleep, get outta bed in the morning and now I am starting to dread going into the ward every day cos each day presents a different set of problems. It never ends, there is no let up and exhaustion is now my best friend.

We are booked into a hotel again tonight as I just couldn't stand the thought of spending the New Year in a poky little room. We spent Christmas there too, going between the hospital and the hotel and it turned out to be a surprisingly good time. We had a pool side room, a connecting door between the rooms and we were, in  general, a lot less stressed than we would normally have been at Christmas time. No rushing about buying last minute food, presents etc. I think Holly, Jacqui and Diana actually had a really good time. We ended up staying for 4 nights!

Holly in the hotel with her one of her favourite Christmas prezzies

o as the year draws to an end, I would just like to say a heartfelt thank you to all those who have supported me, read my blog, sent supportive messages and texts, visited and kept me sane and just in general helped to keep me going.

I wish you all the best for 2012 and I hope that it is a good year for you. Much love and hugs to you all from the North of Scotland.

Thursday, 22 December 2011

Merry Christmas my arse!

LOL. Do you like the title of this post? One of my best friends gave me a Christmas card with that on the front and it made me howl with laughter cos basically, I couldn't have put it better myself.

Jack is still in hospital and I have spent the last two weeks arguing with doctors who have refused to keep on top of his pain. Finally they have decided that he needs an operation for a Fundoplication (tightening of the lower oesophagus where it enters the stomach) and a Jejunoscopy where they fit a feeding tube into his gut, bypassing the stomach. At the moment he has a temporary feeding tube.  They told me yesterday that they can't slot him in for these operations until 11th January, 3 weeks away!

I was told that there are other people on the waiting list before him and I argued that as they were well enough to be at home and Jack was not, surely he would jump the queue. No such luck.

Does this look like a well boy to you???  Jack getting an EEG.

Apparently it is not that straight forward as Jack may well need Intensive Care nursing after the operation so they have to make sure that there is space. As Aberdeen Children's Hospital does not have an intensive care ward that would mean transferring him to another hospital. So I suggested they just transfer him to Edinburgh now so that he doesn't have the trauma of the journey, post operation.  That way, he would be fast tracked and it would also mean that I wouldn't miss out on the long awaited appointment Jack has with the back surgeon in Edinburgh on the 18th January.

Plus I couldn't stand the thought of staying another 3 weeks in that bloody hospital so this morning I lost the plot with the doctors (once again!) and "threw my toys outta the pram".

The result being that Jack was taken back down to HDU as they decided he might have another chest infection and needed more intensive nursing and he is being transferred to Edinburgh at the start of next week or sooner if his condition deteriorates.

So it looks like we will finish the year with a bang, the same way we started the year.

I finally resigned myself on Monday to the fact that having Jack home for Christmas was not going to be an option so I booked us into a hotel for the weekend, close to the hospital and that means we can be close to him but have somewhere a bit more luxurious to go to at the end of the day. My sister (in law) Jacqui will be joining us, as will my lovely lodger, Diana.

If all else fails, it's good to have a back up plan.

In the end, it's not where you are, it's who you are with that counts.

Guy, one of the nurses, looking very festive!

I wish you all a very Merry Christmas, where ever you are.

Sunday, 11 December 2011

Beam me up Scotty!

It has been a very long week since I last posted.

Jack has been very uncomfortable and I have continued to argue with Doctors as to whether he is in pain or not.

I think he is and they think he isn't.


He is not able to tolerate his feeds and is being sick. There is blood in the sick and when his tummy was aspirated a lot of brown reddy sludge came out. I was horrified!

So finally he got some painkillers and they were sedating him to give him some peace. At last, after being uncomfortable for days, he was finally at peace. He had even managed to come off oxygen but then it all went a bit crazy.

On Wednesday morning, he was sleeping in his wheelchair when I noticed he had gone a bit grey. I alerted the nurse and she checked his sats and his oxygen levels were in the 70's which wasn't good so she put him back on oxygen. He had a couple more episodes throughout the day but nothing as bad as the first one.

About 5pm, his doctor, Dr S along with the lovely Dr O appeared at his bedside. Now the lovely Dr O is a horrible female. She was Jack's Dr for many years and wouldn't recognise a seizure if it met her in her soup! She argued with everything I said but in the end, I was usually right, which went down like a lead balloon. It all came to a head 5 yrs ago, when she accused me of making Jack ill. After that I refused to come back to the children's hospital in Aberdeen.

My feelings about Dr O have been recorded and it was understood that she would no longer have anything to do with Jack's care while in Aberdeen. So imagine my surprise when she just stood there, smiling at me as if there had never been any issues.

I was so angry and told Dr S that I was happy to speak to him but not while she was present. She looked at me in total surprise, pointed to herself and said "you mean me?" and I replied "yes, you, so could you please leave". Her face was a picture, let me tell you and off she scuttled.  Dr S, drew the curtains around Jack's bed and asked was I happy to speak to him and I said that I was. He was grinning from ear to ear, so I think he was expecting it!

Jack on Tues, off oxygen

About an hour later, my sister Julia came in and we headed off for a coffee. I came back about half an hour later to find the curtain pulled around Jack's bed and I assumed they were changing him so had a wee chuckle to myself that, phew, I'd missed that one!  But as I got closer, I could hear this noise and as I rounded the corner I could see that his bed was surrounded by doctors and nurses and he was being helped to breathe by a form of c-pap. I was in shock and was unable to do anything but watch while his sats dropped again and again but eventually he started to breathe on his own. Then we were rushed down to HDU.

Another doctor appeared and felt his stomach and told me, like her colleagues, that his stomach was soft and that's when I lost it! I was so sick of arguing about his stomach! I knew it was soft and I had been told many times but my point of view was that there could be other things going on there apart from something you could feel, like an obstruction!! I then demanded a second opinion and to be moved to another hospital if I didn't get it. I was so sick of arguing with these people as I was convinced that with all the agitation and seizures Jack had endured over the last few months, that it had upset the balance of his stomach and that he probably had ulcers at the very worst or just an inflamed stomach.


The next day, Thursday, the GI doctor appeared and he agreed to take a look via an endoscope but that it wouldn't happen til next week. He also suggested moving Jack's feeding tube into his gut, bypassing his stomach all together, therefore avoiding inflammation and excessive reflux. At last, a plan, but it wouldn't be happening til next week.

Thursday night and Friday were horrendous as I watched Jack writhe and moan in pain without any pain relief or hydration as they were unable to get any more canulas into his viens, They were afraid to sedate him after he had stopped breathing so it was decided that they should take him into theatre and put in a Central line or a Hickman line and they would combine this with an endoscope. An hour before he was due in theatre, I was still arguing with a doctor re Jack's pain, It was totally insane. Jack went down at 3.30 and it was the longest 2 and a half hours ever.

My gut instinct told me I was right but I started to doubt myself and then felt bad for hoping that he had what I thought it was because if I wasn't right, I couldn't bear the thought of starting to look elsewhere again,


At 6.15pm, Dr B who did the endoscope, came to see me. He showed me photos of some of the severe inflammation and extensive ulcers in Jack's oesophagus. I was appalled but also relieved that at last we had an answer and there would be no more arguing over pain relief.

It was a bitter-sweet victory and suffice to say, there were no doctors around for the rest of the evening.

Monday, 5 December 2011

Is it really December?

Hello my little gigglers. I can't believe it is December already!

This is the start of my 3rd month of hospital living. It is truly sucking my will to live! LOL

I have been home again for the weekend while Granny Mac stays with Jack in the hospital. It's been a hard week so Holly and I took off to Inverness for some retail therapy. We took the train so that I didn't have the worry of getting parked.

We managed to get so many bargains including an outfit for Holly's High School dance, complete with shoes, which are so so gorgeous! I am mega jealous of them, so much so that I may have to borrow them sometime. I saw this necklace and I just had to have it cos it was just perfect.

how cool is this?

By the time we got off the train at Elgin, the snow was really coming down so I was glad to get home. I think by then I deserved a big glass of wine or two.

In the end, I had the whole bottle! Yummy.  It went down so so well. We also watched a dvd that Holly had bought called Chalet Girl which was actually really funny and is now Holly's feel good movie of the moment.

And god knows we need something that makes us feel good at the moment. I am trying to keep my spirits up and be strong but it is so damn hard when I just want to take Jack home but I can't.

I still try to read your blogs when I can so although I don't comment, know that I am lurking!

Thankfully I have been pretty organised and have done my Christmas shopping, just have to wrap things and write out my cards. As for decorating the house, well that will have to wait.

Last weekend when I was home, we saw the Christmas lights being switched on and then Holly, Emma and I went to the pub. There we were chatted up by a young guy and his friend who made me laugh with his chat up lines. The best one was when he sat down next to me and said "you must be tired girl" and I replied that "no. I'm too bad". He said "but you must be tired, cos you've been running through my head all day!!!"

Pretty corny but hilarious all the same.

Hope all is well in your world my little gigglers.

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