Some you win....

The tribunal service upheld our ESA appeal. Young man was not well enough to attend and it wasn't the right environment for him to be in, sanertiser gel aside. Normally I would have overprepared beforehand.  I would have reread everything, gone over current cases, written notes and slept well. All four cylinders. I stumbled in full of exhaustion and nerves having glanced over the tribunal bundle an hour before.  The panel were incredibly kind but very thorough. No Mercy. They asked me lots of questions and wanted lots of examples and explanations.  They knew about my sons recent hospital admissions, they couldn't take it into consideration in the case but they did seem to be sympathetic to my brain fog.  Afterwards I sat in the waiting room whilst they deliberated and I thought I had let him down. Tears of relief came with their verdict and I quite rudely fled the room before they could see, saying thank you so much, thank you.

A week later we were back in hospital.  The battle to get seen within an hour at A & E was harder, they were overstretched and I had no choice but to be pushy.  The wards were full and nurses were stressed, I had to be pushy to make sure my sons drip was working properly, to make sure his bloods were done, his water was topped up and he had pain relief when he needed it. All the staff, the doctors, the nurses, the care assisstants and the cleaners treated us with kindness and expertise but they rushed to each patient and I could see that the prospect of something being missed was real. I stayed late until he was stable and comfortable and no more could be done, then I could go home and get some sleep.  A treatment programme was discussed with more regular injections and prophylactic antibiotics, which I was happy with but our discharge seemed too reliant on the new programme and too rushed. Young man was anxious and so was I.  He wanted to get back to Uni so I journeyed down with him. The sky went red, the dog got more walks but we were unsettled.

 

Birthday! what now, so soon, 20 years old, no longer a teenager, a university student, a life changing health condition. He had birthday blood tests which showed his neutrophils to be sky high, wow!  We were over the moon and told to lay off the booster injections for a couple of days.  He had a great birthday, meal out with friends, choccywoccydodah cake, new DM's, blue tooth speaker etc.....Then late Monday evening I called an ambulance. Turns out a sky high count of neutrophils can mean an infection. What's going on?

When we arrived we were taken to a new unopened part of the hospital which was a resus unit. It was quiet and new and the staff were amazing.  Once young man was stable I was told that there was a bed crisis, we'd have to stay in resus all night.  The lovely nurse found me a spare trolley to sleep on and even searched for a pillow for me.  Such kindness.  The next day an isolation room was found in a ward where old ladies recovered from hip surgery. As we walked up to the ward I asked the nurse when the new A & E wing would be open, he said March but that what they really needed was more beds.  A 6'3" autistic, neutropenic punk with a 4 inch mohican was quite a shock to the old ladies but for some of the staff a welcome change.

My young man likes to ask people where they come from and what their favourite music is, it helps him to be less anxious.  So he asked all the staff he met in A & E and all the staff in all the wards.  I can tell you that they came from The Philippines, Spain, Portugal, Italy, South Africa, Ghana, Poland, Rumania, India, Pakistan, Jamaica, Somalia and Liverpool.  One nurse with a head scalf happily discussed why Terminator 2 was far superiour to Terminator 1, which my son totally agreed with . Not many liked Punk but alot did like Reggae. What we definately saw was humanity, caring and humour.
 
I ran up and down the hospital talking to the heamotology ward, stayed late again to make sure meds were given and drips were working and jumped up and down when his viens got infected from the canula.  We were moved to another ward and then finally to the heamotology ward where he was safer, phew.  We stayed for the weekend this time, my brother bought his bass in so that with an adaptor, an app and some headphone he could practise for a bit.  Watching I'm a Celebrity on ITV player was a god send and we managed to fight off the boredom.  But I was glad that they were taking their time.  New antibiotics and regular injections every other day with no gaps until his blood levels were back up, then we were discharged and continued on with this treatment.  Its been 20 days since we were last in hospital.......

Kings wanted a second Bone Marrow aspiration done.  Can't go through that again. We journeyed to Denmark Hill and were relieved to find heavy sedation waiting.  Young man slept through it. Then on to CT scan which was quick frankly a walk in the park. What are they looking for?  So now we wait until Jan when we get the results.  I'm putting massive amounts of distance between us and January right now.  Savour the break, no more fighting, pain or trauma and no more being pushy. I'm just looking foward to plain old boring life for as long as possible.

Happy Christmas, especially to the underpaid nurses in the NHS. May 2018 bring you a payrise!