The Washing Machine is Stuck on Fast Spin

That is what the lump in my chest feels like. Right in the centre of my chest..a heaving lump of washing machine spinning faster and faster. Everything going on is just spinning round and round and I cant keep hold of anything to make a difference or change it or even understand it.

Eve is in hopsital, her breathing has become noisy...not noisy and hoarse like croup, not noisy and rattly bubbly like a chest infection. It is more noisy and struggling like everything has collapsed inside her airway and she is being strangled. Along with the noisy laboured breathing is a rapid heart rate. Peaking at 195 on Wednesday night, she doesnt have a temperature, she doesn't look ill. Her colour is good, often when ill she just looks like fine porcelain but her colour is good. When she has the energy to open her eyes she is smiley and interactive. Happy and playful, BUT, there has to be a but doesnt there? Being smiley and interactive makes her work harer to breathe, sends her heart rate higher and exhausts her further and she quickly closes her eyes and drifts back off to sleep.

We arrived at our local hospital to have a chest X ray to rule out a chest infection, I was pretty sure it wasnt a chest infection because she did not present like she does when she has a chest infection. We needed to rule it out though, and in many ways it would be good if that was "ALL" it was. Her chest X Ray was clear, they took bloods and checked her blood gas. Blood Gas was fine and the only abnormality in her bloods was her urea was high...indicating she was dehydrated. They gave her IV Fluids and then decided to start her on antibiotics, just orally not IV at this point....just in case.
Thursday morning she was still really tired still really noisy and still had a high heart rate. Jonathan had a Cardiology appointment, just routine nothing new to report, well we had nothing new to report, the Cardiologist looked at his ECG print out, then looked back at the 3 previous ones in his file, then looked at the one from today, he looked up at me and asked if Jonathan ever had palpitations? How would we know?
Apparantly Jonathan has a short PR interval, this is indicative of something called Wolf Parkinson White Syndrome. This is a new change, was not picked up before and no report of it previously. We need to be aware but nothing to be done unless he becomes distressed by it.

Of course life is mundane right now so we needed something else to worry about...or as Tia put it, right now we have so much else going on we wouldnt have enough energy to put a decent amount of worry into this new news so maybe it was a good time to hear it! Love you Tia!

So back to the ward and chase up the Doctors to seek advice from Eve's specialists in Sheffield. This cahse went on and on all afternoon and as I left at 3.15 to try and race back for Rosie's Bus coming the Registrar had a call telling him to call the Consultant now!
It was later that evening when we got a call from a nurse on the ward telling us the Specialist had requested Eve be changed to IV Antibiotics and treat her as if she had a chest infection. If any deterioration to call him back.
Now I was really confused, her chest X ray was clear, her bloods showed no sign of infection yet treat her for chest infection?
I looked up Wolf Parkinson White Syndrome on the net. Found a reliable source of information and read through two and a half pages of indicators, treatments, effects etc...it was all fairly much what I knew, so why was it that the two and half pages I had read of nothing dramatic, was suddenly totally overshadowed by one simple little sentence.

Can be a cause of sudden cardiac death!

I clicked the red cross and shut down the site, I dint need to look at that right now.

Sleep was a long time coming last night, brain on fast mix, washing machine in my chest on fast spin, tossing turning, up for a wee, down for a drink, a chat with an american friend on msn, and back to bed. Eventually drifting into a sort of sleep and awake again at 5....then suddenly it was half past six and we had overslept!

Manic morning rushing through everything, making the kids irritable the husband frustrated and me just losing it! My tongue running away and my head exploding....thankfully it was soon time to leave the house and make the journey to school with Joshua and Christina and then on to the hospital. A mix of emotions as I entered the hospital car park. How would Eve be, Nic and Sue coming to see her, whate would the Doctors have to say, the Community Nurse coming to finalise the End of Life resuscitaion plans...the washing machine on fast spin and my head in a whirl.

It was good to see Nic and Sue, Eve was pleased to hear them there too. Eve enjoyed time having a cuddle and a sing and was happy and smiley and interactive, and noisy and laboured breathing and heart rate rising and it's time to rest and just have a cuddle. All too soon it was time for them to leave and Eve and I settled for a cuddle, Eve was asleep in no time and we cuddled and waited for the Drs.

The day went on with nonsensicle comments from an unsure Dr. Muttering under her breath to the Drs and student behind her, trying to convince me that a virul infection could be the cause and nothing more. I wasnt convinced and I wasnt happy but I needed to keep my thoughts calm to deal with the Resuscitation plan looming ahead. I let them go and settled with a coffee to talk with the Nurses. We finished the plan and moved on...and the day moved on and the Washing machine span and span.

I spoke with Eve's Nurse, I told her I was not happy with what the Drs had said, I didnt believe they had really thought things through and I didnt think they understood Eve's underlying problems and I felt they were groping in the dark and not making sense. She agreed! She went and asked them to come and talk again. I explained I had to leave 2.45 as I had to be home for Rosie. She went and told them again, I asked a little later what was happneing and she went and asked them again. I was getting crosser and crosser, I was determined to speak with the Consultant myself once home but I wanted to know how they came to their decisions.
At 2.30 a junior Dr came to talk. He was very pleasant, he listened to me, he admitted he knew very little about Mitochondrial disease, he admitted that my fears about her airway not being able to support itself was a valid fear, he agreed to go talk again with the Dr but I had to leave.

Home again Home again!

I did ring Sheffield, I did get to talk with the Consultant, he told me what we needed to watch for, he told me what to ask the Drs to do, He told me when we would need to take the next step and for a brief while the spin speed slowed a little. Then we talked about accepting the progression of disease and the next stage of treatment should this prove to be a collapse of her airway and the spin picked up speed once more.

Rosie came home all agitated and eyes darting and kicking and fighting and I wondered if she were slipping back into her epilepsy again...I made her some tea and her carer arrived and she could see Rosie was agitated and anxious and she tried to help her to calm....and then Rosie began to eat and to calm and to smile and the washing machine slowed a little again. And the phone rang and other issues arose and then there was tea to make and shopping to put away and the mess to clear up and the clothes to sort and the house was a mess and I was too tired and I sat down and chatted and chatted and thank goodness for MSN!
And the washing machine was slowing and easing and the lump was still there.

Then the phone rang again and the news was confusing and the machine set off spinning and spinning again.

And I need to switch of this machine in my chest, and I need to unwind and untwist and to slow and kneel and to pray and listen to God's words in my heart and to let him switch off the Machine and impart His Mercy and Grace and his Peace and to start to begin to trust Him again!