The night she nearly died

>>  Sunday, June 10, 2018

It's been a difficult few weeks. Understatement.

Cog had a headache, I dismissed it as exam stress and gave her paracetamol.  The headache became lethargy, a general unwellness so I gave her cold and flu tablets.  "Crack on with your revision Dearie."

Her face was flushed - "Are you hot? Maybe it's flu, it's still going around. Look, go to the doctors and see what they say".

Turned out it was Scarlet Fever.  Come on, who gets Scarlet Fever these days?!

She had antibiotics, so she should start to feel better after 24 hours,  right? Wrong.

After 7 hours of starting the antibiotics I was on the phone to NHS 111.  I spoke to a doctor : "try to cool her down."

After 16 hours of starting the antibiotics they sent an ambulance.  We felt like time wasters, sure they would say "just keep taking the paracetamol" but they didn't they dressed up in coverall suits to assess her (scarlet fever is very contagious) and with blue lights flashing they took her to A&E.

A&E were fast to assess her.  It took 4 different waits for people to try to find a vein to start IV fluids and antibiotics.  Nurse after nurse tried and failed.  In the end a consultant hit her hand so hard the bruising was clear to be seen and the line was in.  They gave her iv paracetamol to try to help with the intense pain she was in all over her body. She had a bladder scan and they took some blood.  After that they lost interest really, I was left alone mopping her brow trying to bring her temperature down.   But I did get her to sit up and she ate a packet of crisps so she would be fine, right?  Anyone eating must be fine?

She was transferred to a 'transfer ward'.  In a side room, because of the scarlet fever and I sat mopping her down and Cog tried to eat some bread and butter. She knows because of the anorexia she must never skip a meal, she'd try to eat on her death bed.....  I went to try to find a nurse but it was handover time, care stops at handover time.

Then our lifeline came, a lady from the Sepsis team arrived (alerted by A&E), she took one look at Cog and said I will be back in 10 minutes and left.  When she came back she had another nurse with her, she said Cog would be transferred to Intensive Care (and it suddenly hit home how truly serious this was), they fetched a fan,  gave her more fluids, antibiotics and fitted a catheter and she was moved.

20 hours after starting the antibiotics our GP had given her I was sat in a room with sofas in an NHS hospital.   They only put you in rooms with sofas when things are bad.  Cog had been given 5 litres of fluids, blood pressure of 71/53 when I'd last been allowed to see her, her heart was racing, she was struggling to breathe, was in intense pain and had asked me to let her die and now I was sat in a room with sofas in it.  I started to send messages out to the family that I thought should know.  Cogs father had been there since about 4pm, but now I asked HWMBO to get to the hospital too.   Up until then I had thought the antibiotics would turn it around but now the doctor was looking at me with a poker face and gave me no sense of the hope I was asking him to give me.

They took all 3 of us to her.  She was hooked up to many machines, with multiple drips.  They said they had to put an IV line straight into her neck.  Cog was frightened, I stayed and held her hand whilst they turned the area into a make shift operating type area. They put a sheet over her head with a plastic window in but a nurse lifted it so I could lower my head to the bed level and talk to her to keep her calm.  What on earth do you say to your child who you think is dying, whilst a doctor cuts into a large vein in her neck.  I talked about the rabbits, about their coats, about grooming them about when we first got them and I was screaming inside.  The first doctor tried 3 times and failed.   I could see her shaking on the 3rd attempt, the other doctor left and came back scrubbed up.  Each time they gave Cog extra local anaesthetic but she was clearly in pain, the second doctor did whatever needed to be done and they cleared the area again.  Now she had 12 drips hanging, so many going down to a daisy chain of tubes that went into her neck.  But the doctor sat at the foot of her bed poker faced, concerned.  A doctor 1-2-1 for hours in the NHS, this was very bad.  Her father's head dropped onto the sheets whilst he held her hand.   I sat on the other side of the bed with a blanket over me holding the other hand and HWMBO sat holding me.

The person in the next bed was wheeled out and the machines turned off.  It was discrete but we knew it had happened. 

At 5am I sent HWMBO home,  no point in 3 of us sitting there.  If he went to change and sleep some, then he could start calling people and doing the necessary things that life requires, like pet care.

At 10am they took her to theatre, she could no longer breath for herself, her heart was struggling and her liver was not doing so great.  They put her on a ventilator.   The doctor said if it didn't work she would have a tracheotomy.   I didn't realise my heart could sink any lower than it already was,  the nausea and desperation inside were intense.   We were taken to the room with sofas again.

The doctor came in after sometime and said it was in and she was back on the ICU ward.   I said it felt strange that they had not spoken of risks or asked me to sign anything before she went to theatre.  He said elective surgery has that process but when people are this critical there is no choice, it has to happen.  Inside I was screaming, I needed him to say that sometimes people survive this, that sometimes it can be ok.  Neither he nor google would say anything positive.  Each step she went through the survival chances seem to fall.  40% die, 60% die, 80% die...amputation risk, brain damage risk.  Stop googling, stop it.

Only my wise owl friend kept me sane by text with her "that is standard procedure, that is normal, that is correct, they are doing what they should" words.  She may never really know how she kept me calm and in return HWMBO with his regular "what did wise owl say?" question.

Once she was out of theatre she was fully sedated.  They had told her before she went in that she would be asleep for a long time, many days.  She was scared.  We promised her we would be there with her.    The machine did the breathing and the numbers flashed and machines beeped.  She had a nurse watching her constantly.  Before the nurse left the station to do anything, another was called to stand in their place, they tended to everything all the time. Hourly blood tests told them what the infection was doing and what she needed.  Hour after hour of no change, no change, no change and then finally a change, a tiny change but a change - one number changing in the right direction.  Hope.

We spent the next 3 days in shifts.  The first night I catnapped by her bedside, second night I catnapped on the sofa of the family room, the 3rd night a nurse sent me to a bedroom for a nap - I woke up 5 hours later and returned blearily to her bedside "I was wondering what happened to you" she said "I was going to come see if you were ok" - oops! I must have needed the sleep though and they knew where I was.

There was still no positive signs from the doctors, the same concerned faces, she was moved to a side ward in intensive care which worried me even more but then a break through, we were asked to wait in the normal waiting area outside whilst they did something, not a sofa room, a normal waiting room.  I took this as a positive step! 

The days ticked by, she coughed out her tube and they had to put it back in, but the numbers kept moving to better numbers and finally on day 6 a doctor came into the room and smiled at us "She's doing quite well.  Obviously on intensive care we never say it's going to be ok" - yes I noticed that - "but actually, now,  it's going ok" - a moment's relief.  But the anxiety holds, what if she slips back, what if her heart suddenly can't do it anymore, what if, what if....will she be brain damaged?

Cog pointed to a board of words to show us she was thirsty.  Oh my baby.

On day 7 she was moved back out of the side room, some one more ill needed it.  Even this horrid news for someone else was good news to me.  On day 7 I watched 2 more families lose their loved one.   This really is a harsh environment to be in.    Cog had her ventilator taken out and she was breathing with oxygen through nose tubes.  They lifted her sedation levels and she could talk a little.

On day 8 she was moved to a ward, it's difficult to go from the massive level of care and information that intensive care provide to a ward with few nurses for many people, medication that is delivered late or not at all, I stayed 14 hours a day by her side to do what the NHS could not.  I changed her bed, fetched water, made her drink constantly, pushed her to the toilet, washed her, did her hair, read to her.

On day 11 she was sent home...too early.

On day 13 I took her back to A&E, she was seen within 10 minutes of walking in and immediately taken through for chest x-rays, bloods, IV antibiotics and paracetamol again.  She went back to the very first ward she was taken to before, she was taken to a sideroom (because she was contagious) with half a sheet tied up as a makeshift curtain at the window, dirty cloths on the floor, sticky food all over the table and splashes of questionable up the wall and bed.  I wandered out to the ward and picked up a tub of antibacterial wipes and set to cleaning.    But the doctors and nurses came to do their jobs.  A man came with a camera to look at her throat, it went through her nose.  She'd had all these things before but of course she was heavily sedated before or too ill to care.  The doctor walked in and said "wow this room is hot" and he looked at the sheet at the window "it is like my home country.  I came here for better pay and conditions - well at least the pay its better" he laughed.  It lightened the mood. But her father sat in that room with her all night, she was too afraid to be left alone.

On day 14 she took a bed trip to have her heart scanned, the lady that did it was amazing and calmed Cog more than I had seen her in days. Cog said she was studying the heart at college and the lady took the time to run through the scan in detail and explain the different parts and what she was looking for.  On her return to the cell like room Cog was told she was transferring to a new ward, a much smaller specialised one.  She was put in a modern room, with curtains and air conditioning.  Cog's face was like she'd won the lottery, the environment makes such a difference but also the happy faces of the nurses as she went in, they made her feel safe.

On day 16 the consultant came in on her day off to check on Cog, she had promised she would, the nurses told us we were really privileged she'd done it but it meant cog was discharged 2 days earlier than she would otherwise have been,

On day 17 I went down with tonsillitis - but that is completely another story!!!

So Cog is home,  she will not be able to do her exams this year, life is topsy-turvy now.  She will have months of recovery ahead of her but

Cog is alive.

This is a good thing. Understatement.


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