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.


  1. Oh my sweet Lyndylou! I'm so sorry Jack has been going through all this. No one knows a child better than his mother. I've had what they found with the endoscopy and it was some of the worst pain I've experienced. Good for you for demanding something be looked into. My wish is for Jack to be on the mend, and for you to be able to take him home soon. Sending lots of hugs!

  2. Hi my dear friend. I was going to say exactly what BB has already said above, that a mother certainly knows her own child best. It's an absolute tragedy that it took them all that time to do something about it, and your poor gorgeous Jack has had to suffer so much. I can't imagine how awful it must be for you to see him going through all this. A lot of prayers are being said for him, and it's about time that these prayers started to work! Try to keep strong. All this must surely be taking its toll on you. Sending lots of hugs x

  3. The bitterest of the bittersweet darling. To allow him to be in pain for so long and [excuse me for yelling] BUT WHY IN THE HELL AREN'T THEY LISTENING TO YOU. HIS MOTHER? You know Jack the best and they are damn fools to think that the MD after their names means more than that.

    I am glad that he will be getting relief, but more than that I wish they could figure this out so he could come home. This is simply interminable. I don't know how Jack does it, but my goodness how strong your son is. We could all learn thing or two from your brave boy.

    Hang in there Mom. You are doing great - and I know Jack loves that you are there with him. Take care & remember that we are sending you love & prayers everyday.

  4. My Dear, Mama knows best. I wish the doctors paid attention to you. All too often they don't. I pray for you and Jack every day.

    Much, much love,

  5. Stay tough girl friend and keep those doctors that are "practicing" medicine where they belong. Sometimes I think they believe they are so important and brilliant that only they know anything. Bull!!! You are doing a fantastic job and Jack will be better for it.

  6. I am so very sorry for Jack and you. I think of him so often and keep praying. I have noticed in my life that doctors do not listen to families. My husband almost died in the hospital because they didn't believe me when I said he wasn't breathing right. God bless and may his strength be yours.

  7. When will they learn that you do actually know your son better than ANYONE and to listen to you without arguing all the time. Glad that now they know and something can be done.

  8. I just want to say the same as the other posters : "LISTEN TO MUM". It's appalling that Jack had to suffer so much because no-one would listen. It's like one of the worst fears of all mothers coming true :(. I really really hope that now he will get the treatment that he needs. Thinking of you ((hugs)) xxx

  9. Oh Lynne...bittersweet indeed and very infuriating. No one has been as involved and informed and linked to him as you. I don't understand why more of the medical community doesn't understand and listen to a Mother. I am so relived for you, Jack and Holly that they reacted in a positive way and praying this is the beginning of the upswing for you all!

  10. i'm soooo sorry! poor jack. poor jack. poor jack. i just can't even begin to comprehend how upsetting this whole episode is for all of you.

    praying for you all.

  11. Love your blog! I have met my own Dr O & admire you for your courage in refusing to let her near you or your child. Jack must have been in agony, poor thing, but lucky boy to have a mum like you who follows her instincts & won't let the medics fob you off x

  12. Every time I hear how a doctor doesn't listen to a parent it makes my blood boil. There is no greater expert on the child than the parent. Uggghhh. I'm so sorry you and Jack had to go through this. Hugs. Hugs. Hugs.

  13. So..You're one of THOSE mothers :)

    Good on you, you know Jack better than anyone.You know more about his condition than the nursing staff and I imagine most of the Doctors. The endoscope proves it!I've had my own Dr O as well, but being nursing staff I knew what I could demand or not, not many people know that they have the right though. Bitterweet to be right yes, but hopefully healing this will help get him on the path to home.

    I recently had a 3 day bout of esophagitis, just out of the blue, it was so uncomfortable/painful and I was glad when it was over. Jack is so strong he's amazing, and he's soooo lucky he has you on his side mum :)

    I read between the lines of your long miserable stressful days and want to send you the biggest hug.

  14. A mother's instinct is usually the right one - thank god you stuck to your guns. I'm in absolute awe - takes a lot of strength to go through that and remain sane.


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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