Back in June I wrote a blog on Samuel’s sudden decline in health. But since then, I have remained largely quiet about the details because it has been so intense.
The summer has been tough for so many reasons. Since Samuel’s hospitalisation in June, he has been housebound about 85% of the time.
He struggles with bringing shopping in when it has been delivered. He struggles to hold Felicity and Rupert for any period of time. He is often crashed out.
He has spent the whole summer in and out of A&E with severe breathing difficulties and low oxygen saturation levels. He has a significant wheeze and often feels like he’s drowning, unable to get his breath.
Despite having never smoked, drunk or done drugs, he now suffers with a form of COPD, and they can’t work out why his lungs are quite so bad.
They are trying to treat him as having very severe asthma as well, but the inhalers aren’t working and he still can’t breathe easily with them.
To make matters more complicated, he needs steroids to help ease his breathing, but he suffers from a rare side effect from the steroids and loses his sight in one eye due to too much fluid at the back of his eye.
To add to that, the doctors think he has had an autoimmune reaction to everything that is happening in his chest, and he has now, as of the past 10 days, been struggling with severe pain in his joints too, so much so that he can’t grip things or chop food up. He needs steroids for this and his breathing, but he’s not in a position To be sage to take them.
When Samuel was first discharged after his inpatient stay, I had an argument with the doctor. I said there needed to be a plan in place for if he needed help, that there needed to be help within the community because I knew what it was to be discharged and then completely isolated, suffering on your own with no help.
I was told I was being hysterical, that they would never do that and that he wouldn’t be on his own.
They made no plans and just as I predicted, we have been left without any idea of how we move forwards with getting him seen and his symptoms under control.
They discharged him with a severe infection in his lung which we later found out was resistant to the multiple antibiotics he’d been given. He was discharged unable to see out of one eye and them not knowing why. He was then told he had to go back within 48 hours to the eye doctor who confirmed it was due to medication, but had no plan how to take him off them.
The poor GPs have been given no guidance. It’s beyond their expertise and as they have said he desperately needs help but they can’t make anyone bring forward his respiratory consultant appointment.
His oxygen levels have been going down at times to 82% and the inhalers aren’t making that better. He is exhausted, unable to concentrate, and spaced out.
I’ve tried ringing up the consultant’s PA to try and bring it forward, and their answer was just to send him to A&E anytime it is worse. But A&E have said that it’s beyond their expertise and he needs specialist help.
In the whole of the summer, we never went out-out as a family of four. The only time we did was to take Samuel to the doctors and back.
It has been such a wild ride and I think what is challenging is not even knowing where the light at the end of the tunnel is. Currently Samuel is still caring for me as much as he can and I’m helping him too. Samuel’s appointment is towards the end of October, how do we get him to October without worsening? The seasons are changing and the damp weather only increases the breathing problems for us all.
It seems that Samuel is a medical enigma. That he looked at how complicated my health is and his body thought he’d challenge it…
