Having experienced an over night stay each at the hospital with George, it is evident that the level of care is unacceptable.
Natalie arrived home in tears, her story echoed mine the night before.
I have never felt as angry as I had the night before... what am I doing sat in a hospital, nursing my child to a lower standard than I would at home.
Circumstances mean that Natalie I can't stay at the hospital together with George overnight, but we need each other to enable us to look after George because he's so difficult through the nights.
We agreed to the hospital admission to enable him to be observed and his siezure activity monitored and managed.
We left the hospital yesterday lunch time because our Sainsbury's home delivery was due. We were told we could leave for a hour or so providing they were aware. I also needed a sleep as I'd been up all night.
Our community respite nurse travelled to the hospital to look after George whilst we were away. She had been due with him at home so visited him there instead. This provided us with the comfort of knowing a familiar face was with him and they have a great relationship together.
The morning ward round wasn't overly productive yesterday and videos of George's siezure activity were dismissed as withdrawal symptoms from weaning off medication. "IT'S NOT" Natalie and I pleaded. As parents we understand how George is and needed them to listen to our concerns.
Having spent the night with no sheets or blanket our respite nurse kindly made a bed up for Natalie to spend the night, even though we all knew she wouldn't spend much time in it. She opted for the medieval torture device like chair that I had spent my night in.
Emotions high and anger levels bubbling over we rang the hospice to allow us to vent.
We travelled back to the hospital ready for today's ward round. Fire in our belly we called PALs to make a complaint. "I can come to the ward" the lady said. Brilliant! She was with us within a couple of minutes.
We started relaying our concerns. Her pen was almost on fire, our words were leaving our mouths at such a rate due to the emotion involved.
It seemed like we had hardly started voicing our concerns and in walked the consultant.
Natalie and I work well together due to our contrasting nature. We play a great good cop bad cop.
Natalie let rip with all the emotion, tears running from her eyes. I then step in to allow her to console herself and reinforce what she has just told him in a more calm and measured way.
She had vented her anger at the lack of care and support offered.
As I try to calm the situation and put some more context behind the high emotion shown by Natalie, tears started to fall from the eyes of the PALs lady. The current situation was bad enough but with the full context it's even worse.
We were concerned that George wasn't receiving enough attention and unless we were nursing him, siezures would go unseen. The whole point of this stay was for these siezures to be seen by the professionals.
We explained that having him in the hospital is running us into the ground more than it would be at home but we need him to be wherever he will recieve the best care.
"So do you want a discharge?" Says the consultant. "NO" I Explained that we felt that unless they start offering better care we feel he would probably be better off at home but ultimately he needs to be where he's safest.
George is a very complex case so advice was then asked of a specialist children's hospital. When the consultant came back to relay the information George began to siezure. The activity mirrored the activity shown on the video yesterday. "Thats a siezure!" Says the consultant. Funny that because yesterday it was withdrawal symptoms. Excellent we were thinking, well not so much for poor George but great that the consultant was there to witness. "If he experiences that activity more than 4 times in a hour we will need to start a new drug to control it."
The timing was perfect and proved the point I was trying to put across. If people hadn't been in the room with him, it would have gone unnoticed and not treated.
Unfortunately George suffered 3 siezures within 15 minutes whilst the consultant was there.
Shortly after he suffered a fourth and is now receiving new meds via IV. For this to happen he requires 1 to 1 care.
We went on to explain how we were placed into his room on the ward without being shown around, we had no idea what staff were on, what level of care should be offered, there was no sheets and no one available to call if we were witnessing a siezure. We witness them all the time, it's the professionals that need to see it.
"No sheets were put on the bed because some parents are offended by it" we were told? I wouldn't be offended by a bed being made up but I didn't even have sheets available to make it plus no house keeping. "Just pull the cord if he siezures, every man and his dog will come" which cord? No-one has shown us.
Its all so bitter sweet again. Our favourite phrase at the minute but we don't want bitterness. We need it to be sweetness for George but at least he has eyes on him now.
Natalie and I are home and having a rest before going back this afternoon. In the meantime uncle sam and nanny mac are sat with him.
Nanna and Pops have been away recently but are due back soon so at least he will have plenty of family on hand over the coming days.
Our poor little man is such a fighter and has had to put up with so much. He really is a miracle and we will fight for him every step of the way. He played his part in fighting and wining his life. We need to ensure it's a good one for him. It's just so sad he hasn't experienced 1 pain free day in his 6 months on this earth.
We will get this changed and we will enjoy our boy as a family!
Comentários