My Superman Hubby

Today the drains were removed from Hubby's back. The dressing removed revealed an S-Shaped wound  so we all knew he is  SUPERMAN, now he has the S to prove it.

Bit of confusion today over blood tests as he had a test yesterday but needed another today due to increased amylase levels from his pancreas. He feels okay so hopefully nothing to worry about.

Someone was asking about caring schedules, for me at the moment. Always very difficult to document this as where do I start as there is not much sleep to de-mark a start and end to the day. so here goes,

23:00 - turn OH onto left side.
00:00 - turn onto back, help brush teeth, collect urine via intermittent catheter, help clear chest for sleeping.
00:20 - turn onto right side.
05:00 - turn onto left side.
06:00 - turn onto right side, collect urine via intermittent catheter.
07:00 - turn onto back ready for breakfast.
07:30 - Breakfast & bed wash
08:15 - turn onto left side
09:00 - turn onto right side, do a bit of physiotherapy.
11:00 - first antibiotic.
11:40 - second antibiotic.
12:00 - collect urine via intermittent catheter, turn onto back for eating.
12:15 - eat.
13:00 - turn onto left side.
14:00 - turn onto right side.
18:00 - turn onto back for eating, collect urine via intermittent catheter.
18:15 - eat
19:00 - turn onto left side.
20:00 - turn onto right side.
back to the top.

I sit most of the time by his bedside making sure he isn't getting into too much pain and therefore a potential autonomic dysreflexia attack. Give him his oral medication as necessary. Make sure no one messes with his bad left knee. Move him when he is in pain, having leg spasms. On bowel days empty his bowels manually. Many days I cook for him as the food is so bad here.

So there it is...

Surgery Day

08:00 in the morning yesterday, Friday 17th August, the Anaesthetist arrived to take a very detailed medical history. So Hubby asks me to do the talking as he gets a bit wary of repeating his story of all the operations since 2007, his allergies and particular on going medical difficulties. Nearer to 09:00 the plastic surgeon sent his under study in with the consent forms to sign, while he stayed in the office next door. Odd to say the least, OH not impressed.
Just after 09:00  the porters came to take Hubby to theatre. Before he goes we label his left knee as "fragile" to remind the team to take care so his knee does not blow up with swelling.

While he is in theatre, I go do some laundry  and talk briefly with the accommodation manager to obtain a room key just in case I cant manage to  continue looking after Hubby during the night due to his new bed turning regime. Currently live off 5 hours sleep a night, anything less may become too detrimental to my health. 

11:30 meet Hubby back in recovery. He is pale, groggy but awake and surprisingly quite "compos mentis". He has two drains attached to his back wound. syphoning off the blood into two sport drink sized bottles.  They have also given him a huge 1 litre bag of IV Hartman fluid, which worries me some what knowing how his one kidney will eventually over the coming while react to that, over producing urine. So to be on the safe side I give him a catheter to drain off any excess. No reaction yet, only a normal amount. Can be potentially serious not to manage as can result in an Autonomic Dysreflexia attack. Whilst in recovery we see one of the other surgeons giving some feedback to his patient re the success of the operation, Hubby is slightly irked that he is given none.

12:10 we arrive back on the ward. Negotiate straight away re removal of the oxygen, the extra fluids and the 'flotron' boots which are by now causing painful spasms in his leg. We discuss with sister the care regime regarding turning as Hubby has to avoid laying on his back . We try putting him on his left side and he finds it extremely painful , so the plan is amended to 4 hours on right side alternated with an hour on left side. He also negotiates a special position for eating as he cant eat when laid down, his muscles having been weakened by his spinal cord injury means he has to have some of the gravity of sitting up to eat his food. By this time lunch is on the ward, fish and chips. It was horrible, re heated battered fish and the chips well Hubby took a bite and spat it straight out as it exploded in his mouth, being too powdery and dry. I make a dash to the hospital canteen and pay for some fresher looking fare which he managed to eat. They take your benefits away from you because you are supposed to be fed and watered in hospital, what a joke.

15:00 I decide to do another catheter, thank goodness I did, I was right, his kidney has kicked in,  huge amount of urine collected and again at 18:00, 23:30 , you know that physics law of gravity what goes up must come down, well here's a new one 

what goes in must come out....

The system is taking the p*ss out of carers

My Hubby was admitted to hospital on 20th June with a wound on his thoracic spine that requires surgery, two lots in fact . the first was performed weeks back to de-bride his wound to aid in healing. Since which time he has been attached to a vacuum pump and is having two strong IV antibiotics which require careful blood monitoring for liver / kidney function. Next Friday he will have the final operation to put skin graphs over the wound.

So why am I still needed to help him.

1. He has a has a fear of hospitals since his appalling, cruel, treatment at a "nameless" NHS hospital when he first got ill in 2007. He can become verbally combative if he feels threatened, or unsafe. My presence ensures that he does not get labelled as a nuisance patient, as I keep him calm, he can have a row with me and it does not cause the whole ward to get upset.
2. Medical Safety : when he has an autonomic dysreflexia attack he is unable to press the call buzzer. Also since that buzzer is understood by most of the staff to mean that a patient wants them when they can get round to it, because it is not the emergency call alarm, the staff could loose a vital 15minutes in a syndrome that gets very serious, very quickly, added to which getting the on call Doctor on the ward quickly is a bit of a lottery. This actually happened, previous post details.
3. Patient Dignity :  who would want strangers how ever qualified, sticking their fingers up your bum so that you can empty your bowels, sticking a pipe down your prick so that you can urinate. Rubbing cream on your intimate parts.
4. Feeding : although he can if the right preparation is made feed himself, (using 2 functioning right fingers + thumb) he still needs a lot of help as he cant reach for things, his finger dexterity is very poor so lifting off plate lids, buttering bread, opening pepper packets etc is near impossible. if I wasn't there by  the time staff helpers would find the time, he would be eating cold food, be rushed and someone would be bound to forget to make sure his drinks bottle was refilled and near by. Also I am cooking for him many times a week because the hospital food is so bad.
5. Multifaceted problems : it is very difficult for the different numerous staff members to keep in mind amongst all of the patients on the ward , the various pre existing medical problems they have as well as what they are in hospital for. Terence has a high level spinal injury, a very painful arthritic left knee, one functioning kidney all of which have to be born in mind when interacting with him. So again I am an extra safety measure to ensure someone doesn't do something inappropriate with all good intentions.

So I am here at his side for most hours in the day. I have carefully managed a few short break escapes where I have ensured he probably wont need anything, timing being everything. I try and survive on 5 hours sleep if I'm lucky, sleeping beside his bed on a mattress on the floor, just in case he needs help during the night. The window of opportunity for sleep being slotted in between urine catheters at midnight and 06am. 

So imagine my disgust to look at my bank account yesterday and find out that my carers allowance has not been paid since 16th July. Even though I spoke to them told them I was still caring full time and was not available for work under the regulations. May be the stupid idiots have sent a letter to my home 2 hours away that I have not visited since his admittance. 

So what are people in my position supposed to live of, I'm supposed to be a kept women living off hubby meagre state pension. I do not qualify as being available for work as I am not, obviously. Besides who is going to employ a Masters degree qualified person in the type of work that would be available for a handful of weeks any way. They would turn me down as being over qualified.  I do want to go back to work, but meaningful work as befits all of the work  I carried out and experience previous to our family tragedy , also it would require my local PCT stepping up to their responsibilities and actually providing the carers that my hubby is entitled to under the continuous health care regulations.

The welfare state is supposed to be a safety net , so where is mine ?