Wow

As i write this we've had 5738 hits to the blog from countries all over the world - US, Canada, Australia, New Zealand, Ireland, France, Germany, Poland, Norway, Finland, Hong Kong, Bahrain, Saudi Arabia and United Arab Emirates. I'm sure i've missed some too. I'm completely overwhelmed by how many people have read my baby's story. It's amazing and i'm so thankful people have shared this blog with their friends. The more awareness we can raise the better.

I'd like to say a huge thank you to those that have donated to Charlie's Meningitis Tribute Fund. The generosity of people, some who have never met us, is incredible. The money goes to a very worthy cause and we're trying to raise as much money as possible for them. We have also donated £550 to Alder Hey hospital's Parachute Fund which is for their Intensive Care Unit.

I also want to raise awareness of using milk banks for donating breastmilk. Anyone can donate their milk subject to a blood test and answering some simple health questions. There is a link on the right to the UK Milk Bank which gives more information. The milk donated goes to premature babies in Special Care. My goal is to donate at least 1000 ounces of milk and i've donated just over 400 ounces so far.

Thank you for reading Charlie's blog.

Signs of Meningitis

The scary thing about this story is that the only sign Charlie had of Meningitis was a temperature. His type was the one that doesn't have a rash and you always associate Meningitis with a rash. The moaning noise he was making when we went to A&E is a sign but even the staff there didn't suspect Meningitis. Here are the signs to look out for from the Meningitis Trust

http://www.meningitis-trust.org/Signs-Symptoms.html

Babies and Children

Fever with cold hands and feet
Pale blotchy skin
Spots/rash
Refusing food and vomiting
Unusual cry/moaning
Fretful, dislike of being handled
Tense, bulging fontanelle
Drowsy, floppy, unresponsive
Neck stiffness, dislike of bright lights
Rapid breathing or grunting
Convulsions/seizures

I lost my child today

I saw this today and found it very moving

"I Lost My Child Today"

I lost my child today.
People came to weep
and cry As I just sat
and stared, dry eyed.

They struggled to find
words to say To try
and make the pain
go away. I walked the
floor in disbelief.
I lost my child today.

I lost my child last month
Most of the people went
away. Some still call and
some still stay. I wait to
wake up from this dream
This can't be real--
I want to scream.

Yet everything is locked
inside, God, help me,
I want to cry.
I lost my child last month.

I lost my child last year.
Now people who had came,
have gone. I sit and
struggle all day long, To
bear the pain so deep inside.

And now my friends just
question, Why? Why does
this mother not move on?
Just sits and sings the same
old song. Good heavens,
it has been so long.
I lost my child last year.

Time has not moved on
for me. The numbness it has
disappeared. My eyes have
now cried many tears.

I see the look upon your face,
"She must move on and leave
this place." Yet I am trapped
right here in time. The songs
the same, as is the rhyme,

I lost my child......Today.

~Netta Wilson~

Thursday 28th October

Charlie's last day with us was very emotional. Thanks to the staff at Alder Hey we were able to do everything the way we wanted. We had professional photos done by a charity called 'As i lay me down to sleep' and the hospital arranged hand and footprints to be done. Everyone who wanted to had the chance to come and say goodbye properly. His passing was very peaceful and he died in our arms. It was the best we could ask for in such horrible circumstances

Wednesday 27th October

Wednesday 27^th October, a day i will never ever forget. We had been staying in the Ronald McDonald house while Charlie was in Alder Hey and we headed over first thing as had become our routine. We knew the doctors would be coming to talk to us about the MRI results and we knew that those results would show us what we were dealing with. I think over that few days we’d talked about every possibility imaginable. How we could learn sign language if he was deaf and how we could adapt our house if he needed a wheelchair and every scenario inbetween. I kept telling them i could cope with anything as long as i got to take him home. We were told in the morning that the Consultant wanted to have a meeting with us at 1pm. It was torture waiting and although i feared the worst i still hoped for the best.

1pm came round eventually and in we went. We were taken into a room with a computer which had the MRI images on. The Consultant went through each image and each section of the brain with us. The light areas showed areas that were affected. Each area, each section was covered in these light patches. There wasn’t one part it hadn’t touched. After the first few screens it became a blur and i couldn’t listen to it anymore. I just broke down. He asked if i wanted him to carry on or stop for a bit but i told him to carry on. He showed us the brain stem which was also badly damaged. He said this could affect Charlie’s breathing and he might not be able to breathe on his own without a ventilator. We wouldn’t know unless we took him off.

We were taken into a room to sit by ourselves and take in all the information we’d been given. Needless to say we were devastated. It was the worst outcome but we still didn’t know exactly what it meant for Charlie on a day to day basis. We knew it was very severe brain damage but we didn’t know if there was anything he would be able to do.

Eventually we went back into Charlie’s room. A doctor came to see who had been wonderful with us. She always explained to us in more simple terms what the Consultant’s say because most of it was medical jargon. She came in and was blunt with us. His brain damage was so extensive he was unlikely to survive and if by some miracle he did survive his quality of life would be nil. It was blunt but we needed to hear the facts rather than hold on to any hope.

Later that evening we had another meeting with a different Consultant who gave us some more “brutal” straight talking. They were clear. They wouldn’t resuscitate him, the seizures he was having could be fatal and he could die at any time. The ventilator was keeping him alive as the breaths he was taking on his own weren’t sustainable. They couldn’t make the decision for us to turn the ventilator off but they made their position on it crystal clear. The decision was made that we would turn the ventilator off the following afternoon once our families had had chance to say their goodbyes.

Tuesday 26th October

When we arrived in the morning Charlie was very pink and swollen from the blood transfusion. He was a big baby anyway but none of the staff could believe he was only 3 months old. He was frequently mistaken for a six monther. The MRI wasn’t done until 2pm so they told us it would be late when we got the results if at all. Sure enough we were told around 5.30pm that it would be the morning before we found out. Charlie was still sedated, he had been since Friday. He was on a ventilator and had tubes sticking out all over. Occasionally he was able to have milk through his feeding tube through his nose but at times it was causing problems so he wasn’t able to. They let me feed him through the tube sometimes, not quite like breastfeeding! He didn’t have one drop of anything else but breastmilk in his short life even in hospital, i’m quite proud of that fact ;) In fact he had last breastmilk right before we took the ventilator out.

Monday 25th October

They decided to a CT scan to see if there had been any damage over the weekend. My memory becomes a bit hazy now about what happened on what day and in which order. The results of the CT scan showed there was a “pocket of something” and this could possibly show that Charlie had had a stroke or it could be a collection of the infection. If it was a collection of infection then the next step could have been brain surgery to release some pressure and a shunt was mentioned. If it was a stroke well we there were many possible outcomes to that. The next step was to do a MRI. The CT scans are fine but they don’t show as much detail as they needed. It was decided he would have a MRI on Tuesday. In the meantime they were going to do a blood transfusion overnight.

Sunday 24th October

Sunday was the only bright day we had. The Consultant at Alder Hey was optimistic. He said the CT scan from Friday showed Charlie should make a full recovery. A different doctor told us he was too optimistic and not to pin all our hopes on it so we tried to stay realistic. We did find out that 50% of people with this type of meningitis made a full recovery which is better odds than the doctor at the first hospital gave us. It was all so confusing. We didn’t know what to expect or when we’d know. Charlie’s head hadn’t grown any bigger so they were hopeful there wasn’t any more swelling. They said i would be able to get him out and try and breastfeed him on Monday as they were going to stop sedating him. All in all Sunday was a much more positive day.

Saturday 23rd October

The next morning the doctor came back with more news. The strain of meningitis was Pneumococcal Meningoencephalitis which wasn’t just bad news it was the worst news. The type that Charlie had was a particularly nasty strain and causes terrible damage to the brain. The questions we were asking the doctor were awful. Would he die? She thought it was unlikely. It more often causes extensive brain damage but it doesn’t often kill. We now know that the stats are 10-15% of people with this strain die. Probably a good job we didn’t know.

At some point on the Saturday they told us Charlie was having seizures. He was very heavily sedated so it was difficult to tell but at times he was cycling his legs. This was likely to be a seizure. They decided to keep him sedated while he was having them and treated them. We were told we wouldn’t know much about the effects all this had had on his brain until he started responding to the antibiotics which could be 48 hours after they were started.

James came to visit Charlie in the afternoon. He had a box over his head to help his oxygen levels so we told James Charlie was pretending to be a spaceman! That was the last time he would see him.

Early evening came and nothing was happening so we decided to go home and get a change of clothes. We’d been away around half an hour when the phone rang. Charlie’s breathing had deteriorated and he needed to be transferred to Intensive Care. They were trying to track a team down to come and collect him. We rushed back to the hospital. After a lot of organising the team in Alder Hey was able to come and get him. It took hours to get him ready and get him on the ventilator ready to travel.

We weren’t allowed with him so we had to travel separately by car. It’s about an hour from us. That journey was such a surreal experience. It was around midnight when we were travelling and the radio station was playing party songs. Better than depressing love songs i suppose.

It took just as long to get him sorted once we arrived at Alder Hey. We finally got a room around 3.30am and slept til 8. That was a good night's sleep for me!