"My dad dying"

About: Northampton General Hospital (Acute) / Maxillo-Facial surgery

(as a relative),

My dad had voice box cancer 2 years ago. They offered him radiotherapy which he had 20 treatments which got rid of the cancer. After that had go for check up every month 2 years later they were unable to fit him in. After 3 months we complained & they got him in which is where noticed a prob it was bk but worse! ! Only step next was a total laryngectomy, which frightened us all but he had no choice. So on 4 May went had big op he was petrified! ! Op took 12 hrs worst time ever just waiting.

After 12 hrs got phone call to say he was out of theatre & was doin well. They forgot to tell us the reason took so long was due to bad bleed had go bk to theatre to be mended, the speech therapist dropped it 2 wks later! ! Dad was doing really well coping with all. After 2 wks they done a swallow test that didn't work as dad had a fistular to who don't know was a hole between the two channels from breathing & eating which meant drink went straight to lungs! ! So wasn't good! ! He had a feeding tube to help for now. He started having a lot of secretions which looked like the food they were feeding through tube, worked out was food coming bk up through stoma hole which then had to stop! ! So next step was feeding tube in belly peg feed, which worked.

Dad was struggling with secretions was unable to lay down or get into bed due to them 4 6 wks spent in chair sitting up! ! Was so tired & getting very down!. We then realised the peg feed was now not working either as was coming bk up through fistular. Next step was to take him bk to surgery to move peg feed further down to c if would help. We left him just before he went down to have this done to get some lunch. After 2 hrs went bk to c him. His bed was gone & all nurses looked concerned, when asked how & what was wrong nurses said when we left dad had a big bleed from mouth & stoma site, a vessel in his neck had burst & he bleed bad so was rushed to theatre to mend, which was able to do luckily! ! Next step they wanted mend fistular. Taking in mind @ start a very young doctor came to me & said your dad will not heal due to damage from radiotherapy he had had? ? ? ? But as was in such a panic over what had happened never took in as thought everyone knew what was happening etc.

Another big op was needed to mend fistular to get him able to swallow. They took his peck muscle from his chest turned round pulled up & attached to his stoma hole to try give it a living tissue 87 stitches & it looked awful was left on outside of skin pumping away. Dad suffered with this and was in awful pain 4 wks. But again another vessel burst rushed bk to theatre cut peck muscle open & neck to mend. Which took us bk to square one again 8 wks later! ! Things were taking there toll with us all. My poor dad! !

Still having probs feeding they put feed in main artery in his arm which worked but couldnt use for more than 6 wks due to infection. Again dad had to have opposite peck removed to mend everything again. More pain intensive care as his blood pressure dropped. He kept saying he couldn't breathe prop but docs said machine breathing for him he fine as machines were right. Poor dad was in such pain nurses didn't understand him as he had no voice was just getting silly. After few days dad made it to hdu but still kept saying he couldn't breath properly? ! ! Docs again dismissed this as machines said he could! ! Later one day doc said weird dads belly is higher than should b but they didn't know why? Thought they know there job let them find out! !

Once dad was in hdu he was doin well after 2 op to mend all. Very low & had started to shut off was so worried but needed carry on all of us had to & b by his side. My mum was so distraught over all she ended up having nervous break down which put her in bed for wk which then I spent every min at side of my dad. Left him on Monday doin quite well which pleased up all maybe on road to recovery at last long journey 3 months now dad been in! ! ! Sat speaking to doctor who looked after dad in intensive care a lot said I have spoke to dad today & told him if keeps panicking can't breath he was goin get mental health down to speak to him which worried my dad he said no I b ok! ! ! ! !

That night got phone call @ 9 @ nite to tell us rush straight there dad had another vessel burst big one to brain lost all body blood in 4 mins was bad. Rushed straight there docs were coming from other hospitals to help. They put us in family room said its touch & go. They came told us he needed go Theatre but if risked it he would die in lift & could we give them permission to op in hdu room soon as. As was under such panic we said yes do what u need! Between this dad had heart attack & stroke due to losing all his blood lost him but managed bring him bk & stem bleed! But there was no blood now goin to his brain on one side so was told he would b have no least of life. They had sudated him cut all the peck musle again bk to square one my poor dad! ! My dad neck was cut half across, from ear to ear across his throat, due to the vessels breaking each time, but the last vessel that burst was main artery to his brain !! They had no time but to cut it straight across because he suffered heart attack & they thought stroke ! They never thought would make through the night so they never sewed or stapled dads neck bk together !!  We were told not to touch him, clean him up, or try to stop the bleeding because of the risk of another vessel breaking. Worse thing I ever c!

My dad had the blood every where his neck was still not sewn up across the front, his hair was red instead of grey he was still bleeding from mouth & heavily from neck. Never seen so much blood! ! He made through nite. Next day still bleeding heavily & still alive sedated. Dads eyes while closed started moving worried me so spoke in dads ear if can hear my move your tongue which he did! ! ! Was so freaked out my poor dad could feel & hear all! When mentioned to nurse she said was impossible so made her come & watch he was awake under sudation still! ! ! This was so distressing. The nurse was distraught and they had to up it more poor man! ! ! I am so worried dad knew everything that was happening to him even them operating on him as everything they said had not b so! !

Sat with him for days just bleeding from all sites very bad they could not move him as was worried vessel would go again so he had stay sitting in his blood! ! They needed get him into intensive care but again was unable to move him due to more vessels breaking. After 3 days dad was still with us how I will never know. They decided time to get him into intensive care which managed to do. Doctors called us in said he had now picked up worse bug than mrsa due to op in ward with no sterile gloves etc! ! This was another prob poor dad had to fight. Later that day doc came said I feel really bad telling dad I will get mental health to him. His oesophagus had broken away which meant all the oxygen they were giving him was goin into his stomach which why stomach lifted & he actually was unable breath! ! ! This absolutely broke our hearts how could they of not know! ! !

After 5 days dad was still alive still bleeding heavily. They just kept pumping blood bk through him. They then said they need remove sudation bear in mind no blood goin to brain was so scared what was goin b like. They lifted sudation. First thing he asked was for  me & tried sit up he was ok! ! Again docs confused. Because he was confused he was trying move but because they had not fully joined his head bk to his neck at the front, and the more he moved the more it bleed the worse it got! ! ! He was not with it thought all nurses trying kill him was distraught in himself.

After 5 day the smell of blood & the state my poor dad was in was awful. Again docs couldn't understand how he was still alive! ! On the 6 day they turned breathing machine down to c how he went he struggled so they went out bk on was unable to as had such big gap between head & neck it just would not work. Two nurses stood with hands round neck to try help him to hold air in! ! Docs took us to room said they couldn't do no more would we like them to stop? My poor dad just could go on no more we said pls stop! ! He died in our arms 15 mins later he drowned in his own blood! ! ! ! The thing that upsets me is why didn't someone tell me that after radiotherapy my dads neck would b like a bit of rotten wood & like if tried put nail in it it would fall apart which what happened over the months! ! No warning this why vessels burst! ! Plus why this young doc told us from start but know one mentioned again! ! I am totally distraught with what me & my family have been through. He was suppose b home in 8 days now he home in ashes broken hearted. Just feel something has gone wrong this wasn't suppose to happen or @ least warned us what the out come could b after so much radiotherapy.

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Update posted by risal (a relative)

No responses ??

Response from Head of Patient Experience & Engagement, Northampton General Hospital NHS Trust

Dear Risal,

Firstly please accept my apology that we have not responded to the experience you had with us during the time that your father was within our care. I am really concerned about your experience and feel it would be appropriate for you to contact our Patient Advice & Liaison Services (PALS@ngh.nhs.uk, tel 01604 545784). PALS will be able to help you with gaining answers to your questions and supporting you through such a difficult time.

Again, sincere apologies Risal. Best wishes.

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