Charlie's Story

Charlie’s story

It was about 2 / 3 am in the morning when we noticed Charlie wasn’t right, he seamed to be struggling with his breathing and went blue for a moment or two. Having 3 other boys we just knew something was not right. We were unsure so we called the NHS help line and explained the situation. Within minutes whilst they were still on the phone an ambulance and paramedic turned up at the door and whisked us off to our local hospital. When we arrived we were rushed straight in and the doctors had a look. After about an hour or so we were released being told it was just a cold. However if he goes limp, blue, doesn't feed and struggles to breathe then call your GP or bring him back.

On the Friday following Christmas day, 3 days later we still was not happy with Charlie so we went to Boots, our local chemist and spoke to a pharmacist who told us there was nothing they could give him but strongly recommended that we see our Doctor or get him straight back to A & E. Lucky I thought, as our Doctor was next door, how wrong was I. I went in and spoke to the lady at the desk and explained what was going on and that he was 10 days old but only got a reply off " You cannot see a Doctor today or you cannot arrange a home visit but you can have a telephone call from the Doctor if you phone up for one". So off I trot back home, a little upset but made the call anyway. At first the told us that we had to come back and register him as he was not on the system and a new born. Not happy with this the lady eventually took the details over the phone and said a Doctor would call back. We sat and waited and waited until the call came in from the Doctors.

When I arrived it was quiet so I explained to the lady what had happened and that we were in A & E Christmas day, so she told me to take a seat. What seemed like forever and me getting a little worried a nurse came and took us in and told us to wait. A few other nurse came in and said hello as they had seen us Christmas day. Then the first Nurse that had seen us Christmas day came and had a look at Charlie and then said wasn’t you in Christmas day. I told her we was and tried to explain what had happened. She took a look at him and went of to get the doctor.

The Doctor came along and I explained what had happened and that he was in intensive care at the start and we had been in Christmas day, he took a quick look at Charlie and said it was proberly a cold. He didn’t even get him out of the car seat at the time, he just said if he's still bad Monday then see a Doctor. He spoke to the nurse and off he went. I was about to pick Charlie up and go home when for some unknown reason the nurse said I will just check him and took him out of the car seat and put the sats traces on him to measure his oxygen and heart rate I assumed. With this the machine went crazy beeping everywhere. She said don’t worry about it we cant get a trace and it always goes wrong so she put the trace on his ear. Still it kept going off, so she went and got the doctor. The Doctor came and had a quick look then said " oh well we will do an x-ray " and with that off he went again. The nurse then laid an oxygen gas mask in front of him while we waited. With this I told the nurse I was going to call my wife " Louise " as she needs to be here, it just didn’t feel right and I had been at the hospital for ages. When I returned the Doctor came back and said there is a slight infection so I am going to speak to Bristol children’s hospital. At this point I was now starting to panic as all I had been told before was that it was a cold, so I spoke to the Doctor and said shall I tell my wife to go to Bristol ? With that he replied, " Don’t worry I just want to speak to them ". When he returned Lou was here and he informed us that we were to go to Bristol to check him out and an ambulance was waiting. Why couldn’t they do that here I thought but I knew Bristol was a top hospital for children. All this for a cold, mmm, there’s no panic so why should I think any different. I jumped in the back of the ambulance with Charlie and off we went. I remember feeling so guilty as I though we were waiting their time and they had more important things to attend too.

When we got a Bristol Hospital it seemed a casual approach as we went straight into a cubical. The nurses all came in and had a look at our little Charlie. I can remember one asking for his x-ray but the other hospital hadn’t sent it. There was a relaxed feeling as if the other hospital had told them he had a sniffle with a slight chest infection but how wrong. Within minutes of them looking at him he started to go blue and I remember saying " That’s what he goes like" I told Weston this but they couldn’t see it. The Doctor asked us to leave the room as Lou is not great with needles and they wanted to do there checks, one of which blood gases. We later found out that his carbon dioxide was 87 when it should have been 30, why wasn’t this done at the other hospital ? What does this mean ? Is that good or bad ? BAD, all of a sudden he came out and was rushed into resuscitation. When we walk in " Amy was holding his head with a oxygen mask over his face pumping oxygen into him. We stood there and watched the nurses keep rubbing his chest to wake him up and almost kick starting him again. It kept going flat for what seemed forever and then a little rub and off he went. I was in agony and had to stand back I couldn’t handle it, forget the other doctors, is this my 10 day old boy lying on his death bed ?. I remember one of the nurses telling Louise to rub his chest, as she did they said " No Harder ", at that point I thought he was a going to. About 3 hours later I think it was, he had calmed down and we were transferred to intensive care. This was the point I felt safe, it was our third time in intensive care but somehow this seemed different. Louise was a rock through everything and I don’t know how she managed to deal with it and I was worried she was taking too much on board and would breakdown at any point.

After a few hours the Doctors came and explained what had happened and in English terms he had developed which they thought was Bronchiolitis but still had to confirm it and that he became so weak because he struggled to breathe, that he gave up and had enough of life, although he didn’t quite as he was still with us, (  I don’t blame him in a way, he started off in ICU and then when he got home he got Bronchoilits and instead of being seen to straight away he had to wait 3 days, is this what life is about, waiting for the right doctor to come along when ill or being sent home to die ?).
Shock horror we thought, he gave up on life but then we found out that if he wouldn’t of got to hospital when he did then he might not of made it to the morning my heart felt like it had been ripped out, I couldn’t stay in the room, my eyes filled and I felt sick, thank god we are in here, that ........ Doctor I would like to tell him what a cold is.
Time went on and the eventually they tried to get him off cpap ( this is like sticking your head out a car window at 125 mph and breathing ) onto a vapor-therm but he was having none of it and again I thought this is it, he’s never going to get better. I remember calling my brother, I poured my heart out and said you need to get down. I didn’t think he was going to make it and I wanted him to meet his uncle. Louise was still strong thankfully; her head was focused on Charlie, understanding what was going on. She wanted her bonding time with him and somehow she knew he was coming home.  Any way in time he did and we managed to get him out on the ward even though he still had the vapor-therm giving him oxygen. After a day or two they managed to get him of the vapor-therm onto a nasal spray which was basically the same thing but a lower amount of oxygen. This he must of loved or maybe most of his life he had things shoved up his nose to help him breath and tubes down his throat to feed him, he just wanted to stay because he was only lasting a few hours own his own. I wonder if he thought this is what life is about, someone keeping me afloat, nothing to do, sleep, sh... and eat. Time went on and in the end we bought him home.

Still worried but excited that he was home I think we went out and bought every monitor you can buy even to the extent of a mat that goes under his bed and if he doesn’t move in 20 seconds an alarm goes off. We both decided to get something positive from this and instead of going mad at the GP Doctor and first hospital ( Although we have complained about them and will deal with it as a separate matter ) we have chosen to write a document or get one printed on Bronchoilits and raise money to buy the hospital's machines direct rather than them wait for the NHS. This will include things such as all in one multi coloured pens which the nurses have to buy and a number of ear thermometers and some high tech stuff. To raise the money and help others we have made this website www.charliesthankyou.co.uk and organised a number of fund raising events. Also awarness of Bronchiolitis at www.breathtaking.org.uk

The questions I ask is why were we sent home with a cold the first time and why was no x-ray or blood gases done ?

Why was no blood gases done on the second time ?

Why did our GP not see us and tell us it was a cold without even looking at him ?