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!
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.
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.
 |
| source |
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.
 |
| source |
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,
 |
| source |
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.
