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…
My Dear Friends,
You do not know me, I am on the other side of the ocean. Our daughter Alannah has ME since 17, now 30 years old.
I have been following your life journey for some years and have been edified by your courage, strength and fortitude. You are a very special and important person. Your opening up and sharing your life is a wonderful gift to so many people, me being just one.
The daily struggles for Alannah and our family and the constant fighting for good medical care is daily. We understand your and Samuel’s frustrations in the lack of knowledge, care, direction and time of many doctors.
Alannah can read…. but cannot read and follow you due to the cognitive PENE…. Post Exertional Neuro-Immune Exhaustion that it causes along with writing, being on the computer, phone or any screen time.
No movies, music, reading, writing, letters or keeping a journal, not able to do crafts because of some unknown hand eye, neuro connection. She cannot take supplements and vitamins that once helped her because of an MTHFR gene mutation. The illness fluctuates, has so many nuances and is so hard to comprehend.
My heart goes out to you personally. I can only empathize how much strength and perseverance you need just to get from one day to another while doing your best not to get overwhelmed and discouraged. It’s so very difficult to cope with ME without outside stress. It is extremely hard with any stress, especially when it involves a loved one, your’s being Samuel, whom you love so much and want his return to health and well being and are doing everything possible to help him feel better.
My heart goes out to your dear husband Samuel as well, who so lovingly and faithfully has been your husband, best friend and caretaker and still is during his own health crises, serious illness and suffering seeking medical help to find the root cause/causes.
I am praying for you, Samuel and your children for healing, health, joy and peace.
Thank you for sharing your happiness, joys, struggles journey and life with us. By doing so, you are helping all who are behind dark glasses.
The love and peace of Christ be with you all,
Donnamae
Oh Jessica, what an absolute nightmare. I can’t believe he’s not being seen as a matter of urgency. How very frustrating and upsetting for you all. Praying that there will soon be a clear treatment plan in place that will really improve Samuel’s health and for strength for you both in the meantime as you support each other.
So sorry you are both going through all of this and aren’t being properly supported. Are you in the UK? If so you can call the community Occupational Therapist or Physiotherapists for support after coming out of hospital. You don’t need a referral from your GP.
I am speechless and just want to leave a hug 🫂 if you want. What a hell of a ride 😭