The Next Part of the Story

“How are you?” My friends and family ask me regularly.

I don’t know what to say. I haven’t given myself a moment to actually contemplate how I feel about any of my current situation.

Samuel was admitted to hospital again nearly three weeks ago. He was struggling to breathe and was getting weaker and weaker.

They admitted him on antibiotics for a bacteria that wouldn’t go away and was resistant to a lot of antibiotics. In fact he ended up using all of the three antibiotics that the bacteria was sensitive to, but he still didn’t feel at all well.

When we first went to visit him in hospital, he could at least come down to the coffee shop to see us, and although he looked quite unwell and very thin. He was still himself.

He was moved onto a respiratory ward and we thought that maybe we had finally got to the place he needed to be. But as soon as he went on that ward, he declined extensively.

He couldn’t get off the ward, he could barely get out of his bed at all and when I spoke to him on the phone, he was really distant, as if it was too much energy to concentrate.

The respiratory nurse said that the bacteria Samuel has will be in his system for a year with big flare ups and it was about managing this.

Despite our concerns about Samuel’s deterioration, the doctors weren’t overly helpful. He could barely get to the bathroom without being out of breath, his throat was so sore that he was unable to eat.

But they still discharged him. Thry didn’t listen to my requests of having a care plan for when he was in the community. They didn’t listen to any of it.

I managed to get them to at least provide the solutions for a nebuliser. But with no nebuliser, we’ve had to wait for one to arrive from online.

When we looked into his throat, it was completely understandable why he was in so much pain. He had a ball of gunge at the back of his throat which was really disgusting. It makes me shudder thinking about it!

All he did was sleep. He was asleep more than he was awake. He couldn’t eat or drink. I was watching him waste away before my eyes.

He was meant to have a thoracic medicine appointment for his respiratory the day after he was discharged. We literally dragged him out of bed to get there, both of us feeling so unwell and once we got to the hospital, we were told that they’d cancelled the appointment and the next one wasn’t until FEBRUARY.

I rang our GP surgery the next day and said I urgently needed Samuel looking at but he wasn’t well enough to get out of bed. They refused to come and see him, even though I explained that I was disabled too and I physically couldn’t get him to the surgery.

We were told to ring 111 and after much persuasion, someone came out to see Samuel. She was so lovely and she thought that his throat was so infected that that was causing his problems.

She managed to get hold of the community respiratory team. Maybe the gunge in the back of his throat was coming from his lungs? Other than that, she was unsure what she could do. They desperately needed to get this gunge out.

The respiratory practitioner, who was absolutely lovely, came to check on his breathing. Unbelieveably, we discovered that Colchester hospital had failed to do the whole spirometry test in July. For some unknown reason they only did half of it, and the half they missed would have confirmed if he had an official diagnosis of COPD. This meant that he was in no man land. The community respiratory team couldn’t come out to him regularly without the full diagnosis and the GP surgery and the hospital were arguing over who should take care of him.

She said that the main issue that was worrying her was his lack of fluids and food. So she rang the GP and stayed on the phone for over and hour. Despite her explaining she didn’t think he was safe to come out of our house, the doctors refused to come out because it was a failed discharge so he had to go back to the hospital.

The hospital were horrendous, once again. They were going to leave him despite the fact that we’d been told to go. They said that this should be dealt with by our GP surgery.

No one would help.

They ended up keeping him in as his bloods showed he was dehydrated. But the trouble I had with the doctors on that unit were on another level.

I won’t talk about it now because even thinking about it makes me burst into tears of anger and upset. Maybe I will do another post on that soon…but let’s just say I haven’t been spoken as horrendously as that since the days of Boss Man.

It has been so hard on the children. I cannot explain to you the pain of listening to Felicity sob as we had to leave Samuel in hospital, or cry herself to sleep because Daddy was meant to be home, and he wasn’t meant to leave her.

I have been completely reliant on my family and friends. And I’m so flipping grateful to everyone who has helped me.

But it has been hard. Hard to watch someone wasting away in front of you, yet the doctors just don’t seem to know what to do. Hard having to try and be strong for everyone else. Hard having to put everyone’s needs before my own health.

So if you ask me how I am and I take a while to answer, I haven’t even asked myself it, because the hurricane of upset and trauma are still spinning around my head.

And the worse of it is….this is not over. Samuel isn’t magically well. He was discharged on Sunday evening, but his throat is in a worse off case than when he went back in. I guess I’m going to have to find a way to get him to the GP surgery, and I’m going to have to pray that somebody listens and finally helps us.