Monday, June 24, 2013

Advanced Biomechanical Rehabilitation(ABR) Hours to date

Just a little diversion from my current blogging path as I'm preparing to go to Singapore next week for our next Advanced Biomechanical Rehabilitation (ABR) session.

I am currently completing our "home performance record" which documents how many hours we have spent on each "application" or "prescription exercise" and thought I would do an update on our blog to show how much time and effort I devote to delivering this amazing rehabilitation approach to Master Corb.

Manual Hours to date - 2987 hours

Machine Hours to date - 58023 hours

Just to recap - the "manual" hours refers to the actual hours that I (or Corbs Nana who has done a few hundred hours) have personally, physically delivered the technique on Master Corb.  This has been performed on at least 50 different arrears of this body, primarily his head and torso, depending on the individual prescription exercises I have been given at our clinic or training session.

The "machine" hours refers to the hours that have been delivered by the ABR machine that we hire.  The machine simulates the manual technique.  Master Corb has slept with the machine on for over 6 years (one machine can be applied to 1-4 applications each time depending on the childs tolerance and Master Corb has had a minimum of 2 applications each night hence we clock up around 24 machine hours each night)

I want to reassure people (particularly the sceptics in the orthodox medical profession) that the reason I have put so much effort into ABR over the past 6.5+ years is because we have seen positive changes and results that would not have occurred otherwise and can not be explained by Master Corbs paedetrician or orthopaedic surgeon (or should I say they don't want to explain them and would prefer to ignore them because, heaven forbid, ABR might actually work!).

Contrary to popular belief I am not an idiot and I am not having the wool pulled over my eyes.  I am an educated individual who is deeply passionate about my children but I am not stupid, I thoroughly look into and research everything when it comes to my children and I know there are no cures (miracle or otherwise for Cerebral Palsy) but at the end of the day I let the results speak for themselves, any improvement is better than the alternative which is none at all.   I know a good thing when I see it and Advanced Biomechanical Rehabilitation is a revolutionary approach that does what it says -REHABILITATE.

Can't wait to get to Singapore and see Mr Blyum next week.

Monday, June 17, 2013

Too Early Part 3...

5 June 1997 - My first "hold" of my baby
6 June 1997 - Day 4
Was told Jay has a heart murmur due to a valve in his heart not closing on birth (which is what normally happens in full term babies).  Apparantly this is common in prem babies.  They will start a drug to close it later today after the morphine is stopped (they have slowly weaned this down over the past 2 days).
His weight has dropped to 1.01 kgs.
I was very depressed today.  Everytime a card or flowers arrived I just cried.
Grandad F and Uncle B visited Jay today - first time.  I think they were both shocked.  Who can blame them, Jay doesn't even look like a real baby.

Sunday, June 9, 2013

Too Early Part 2...

Here come the next few entries in my diary....

4 June 1997 - Day 2

Met paediatrician Dr Nicola.  She explained that Jayden would have a brain scan and a chest x-ray today.  She asked me a lot of questions about Jaydens birth and the days leading up to it because they are very concerned about the severe bruising on the top of his head. After discussing it with her they are pretty sure (and a little horrified to say the least) that it would have been caused by the internal exam the midwife who was with me for the delivery had done about 10 minutes before his birth.  She had a really good feel around and freaked out because she thought he was coming breech (which would have been fatal) yelling at me not to push because she thought that the very soft head of a very premature baby was his bottom.  So I gather she did not have any experience with very premature births and the result was significant trauma and bruising to his head - fantastic!

Got the result of the brain scan later in the day.  Jayden has a small bleed in his brain classified 1 on a scale of 1-4.  The will continue weekly scans to keep an eye on it.  The chest x-ray is standard procedure to check the lungs and heart and check the placement of the ventilator tubing.

They started feeding Jayden 1/2 ml milk feeds every 2 hours but because of all the drugs they have given him and his immature digestive system he didn't take the milk very well so stopped it later in the day.

5 June 1997 - Day 3

Had another restless night.  Went to see Jayden about 4am.  I got to change his nappy for the first time. 
Gary went home at lunchtime with his mother.  Mum stayed with me. 

They changed Jayden from his plastic "tent" to an enclosed incubator this afternoon.  I got to have my first "hold" while they were changing him over (hold - not cuddle - a cuddle is impossible with all the attachments).  I was scared that I would accidentally pull out one of the tubes or attachments. I wanted to hold him forever, I want to protect him but I can't - his feet got cold so he had to go into the incubator after about 5 minutes. 

I got to have a good look at him once he was in the incubator.  He has an IV in his arm for fluids (lipids and TPN - Total Parental Nutrition - this is what feeds him), he has a line in his navel for blood testing and transfusions.  He has 3 probes stuck to his body that are hooked up to a rather large machine that beeps constantly and monitors his heart and respiratory rates.  There is a probe wrapped around his little foot which measures the oxygen saturation in his blood.  And there is the ventilator which is doing the breathing for him.  They don't know how long he'll need the ventilator - its up to Jayden (really - is any of this up to Jayden?)

I got moved into the "self care" room especially for out of town mothers with babies in NICU tonight.  Room mates Bridget (twins 28 weeks), Cate (baby 30 weeks) and Lorna (baby full term has had surgery).

Not impressed with my MIL today - found out today that she was miffed because we didn't name Jayden after her father because Gary was (middle name).  I think there are more serious things going on here that what we have chosen to name our son!

Thanks for reading - there will be more next week.

Monday, June 3, 2013

Too Early.........

Happy Birthday to my miracle baby Master Jay.  Sweet 16 today.

From a tiny premature dot of 1080kgs (2lb 6oz) born at 26 weeks gestation, to a mighty handsome young man who I am extremely proud of.  He is and always has been an awesome kid.  He has been pretty well behaved most of his life, he is a very likeable young man, he has always tried his hardest at school and he has shown huge commitment and dedication in gaining a vast amount of "mechanical knowledge" from whatever means necessary over the past 12 - 18 months.  I am very proud of him.

When Master Jay was born I kept a diary of the first 81 days of his life - this was the time he spent in hospital when he was born.  He spent a lot more time in hospital over the first 2 years of his life and I wish I had kept a diary of all of this too for others to look back on and fully appreciate the miracle that is Master Jay...

Not many people have read this diary, only a few close friends and just recently I let Master Jay read it. Up until a few months ago he didn't really take much interest in the details of his birth.  He knew that he had hemiplegia because of his premature birth but beyond that he hadn't really been interested.  He was asking me a lot of questions one day and I suggested he read my diary - he was blown away....

Here are the first 2 entries................

2 June 1997

After 10 days in hospital I should have been discharged this morning but the doctor missed me on his rounds.  The nurse tried to track him down but he had left early because it was Queens Birthday so I resigned myself to the fact that I would have to spend one more night in hospital...
The contractions started again at lunchtime.  I told the nurse who gave me panadol.
Still going at 3pm.  I started to worry that they would have to put me back on salbutamol to control the contractions and then I would never get home.  The nurse said she would track down a doctor.
At 7pm the registrar finally came.  I was given an internal examination.  She told me I was in labour. Up until this point I never really even considered that the baby would be born early.  I guess I was naively denying that it was a possibility.
When she told me I was in labour I burst in to tears.  This wasn't meant to happen.  None of the books on child birth tell you that this could happen.  I was scared and didn't know what to think.
Then everyone started panicking, rushing around tracking down the specialist, the paedetrician, contacting Dunedin hospital (because Invercargill did not have the skill or facilities to cope with a baby born at 26 weeks) and trying to get hold of Gary.
Then I started to panic.  If all the staff are panicking then something must be really wrong.  The baby is going to die or he's going to be all deformed - I was beside myself with worry.
They decided  not to risk transferring me to Dunedin in case the baby came on the way.  I was moved into the delivery suite and prepared for the birth.

3 June 1997

Master Jay was born at 3.12am.  I caught a glimpse of Jayden as he was whisked away to be resuscitated.  It was all very sad and terrifying.  I had just had a precious little baby but I couldn't have him.  It should have been the happiest moment of our lives but I couldn't even look at Gary during or after the birth because of the guilt and fear I was feeling and I was scared at what I 'd see in his eyes.
Gary phoned the new grandparents and they arrived soon after.  Everyone was just sitting around waiting in my room in the delivery suite and I couldn't bare it.  I was exhausted and drained and I felt guilty and incompetent.  I just wanted to be left alone to cry for myself and my little baby who was fighting for his life.  It wasn't meant to be this way.

We finally got to see Master Jay 2 hours after he was born.  He was in the Neo Natal unit in an overhead incubator.  He had tubes and wires everywhere and he looked so tiny and helpless.  The nurse explained what everything was for but I didn't take a word in. All I remember thinking was that this is, he is not real, and that there was no way something that small would live.   I was shocked or maybe I was in shock.
The "rescue" team arrived from Dunedin hospital.  It took them 2 more hours to stabilise and prepare Master Jay for the 3 hour trip to Dunedin. My baby left for Dunedin around 7.30am.  I had to wait until 11am to be discharged from the Obstetric Unit.  After going home to pack, Gary and I drove to Dunedin and arrived at about 3.30pm.  We went straight to see Master Jay.  He was again in an overhead incubator with a plastic cover over it to keep the humidity right.  I could hardly see him for the condensation.  He was heavily sedated with morphine to stop him from stressing and lights had been set up for jaundice. We were told that the next 24 hours were critical.  The new born intensive care unit (NICU) was so hot and I felt so faint.  I just couldn't bare the pain in my heart.
I was readmitted to Dunedin hospital post natal ward and a midwife showed me how to express milk that night.  I got 1ml.  Gary went to a motel and I got very little sleep again.  I listened to the cries of the new born babies  everywhere around me as I thought and cried for my own little new born fighting for his life 4 floors above me...

Happy Birthday Master Jay.

I still can't read this without shedding a tear as I remember this day all too well.  I think I will post more of the entries from my diary over the next few weeks.