I want to share with you all in blogger land, a story of a little boy in Tassie and his gorgeous family. His name is Andreas and he is 7 months old. In fact, I will let him tell you ......
My name is Andreas Sheppard I am 7 months old, from Hobart & this is my story.
Mummy & Daddy were told before I was born that I had a hole in my heart (VSD) but everything seemed fine. At 9.11am on 23rd June 2011 my fight for life began. At first everything looked fine, I got to have a short breastfeed from mum then the unexpected happened. I crashed and went into critical heart failure and required intubation (life support). Mum, Dad and my siblings Maykayla 12yrs, Sinead 8yrs & Soren 2.5yrs were very emotional.
Mum and Dad were advised that my life expectancy was only a couple of hours. Friends and family came to meet me quickly and my Christening took place. After many tears and prayers I fought hard and was flown to The Royal Children’s Melbourne with Dad 12hrs after birth.
I was only given a 1 in 10 chance of surviving the flight. During that night Dad was advised 3 times goodbyes were needed. I kept fighting very hard and Mummy flew over to me on 28th June and started the bedside vigil. At 7 days old in ICU, Daddy was allowed to hold me for the first time & mum got her 2nd cuddle. They were scared with all my medicine lines & monitors. I was surrounded by monitors, tanks, syringe drives & drips stands. I made it to ward 7 West with oxygen assistance. At 3 weeks I got my first bath. Mummy expressed milk around the clock which I receive though a tube in my nose (NG). At 5 weeks old my siblings came for a visit & family members. At 5.5 weeks I finally could breathe without oxygen assistance!
At 7 weeks old I flew back to home Hobart! I fly to Melbourne every month for a check up and to monitor the progression of my heart problem. I see private Cardiologist & Paediatrician in Hobart every month. I have weekly appointments with Paediatric outpatients in Hobart. Paediatric outpatients home nursing call in and say hi.
I had a surprise admission to Melbourne in January 12 for 8 days requiring IV medications, I rejected the IV after 26hrs without a full dose of Antibiotics. They changed me to oral Antis as I am extremely hard for IV access because my veins are so little and it is best to keep an access free for emergencies.
I am gaining weight which is fabulous but comes with the problem of my heart having to work harder to sustain my life. Doctors have advised Mum & Dad there isn’t much more room left for increasing my daily medicines I depend on.
My Paediatrician advised Mummy today that everyone is still in shock I had managed to stay out of hospital until January 12. My future is short and we are expecting lots more admission to Melbourne Children’s but I will fight on and keep proving everyone wrong.
Thank you for taking the time to read my story, love Andreas xo
and this from his Mum and Dad:
Before birth we were aware our 4th child, a son, Andreas had large hole in his heart (VSD) that shunted blood flow L to R but we were told it did not require intervention, just monitoring. No one knew Andreas had Hypertrophic Cardiomyopathy which has given Andreas no life expectancy. Doctors cannot give us a time frame as they simply don't know.
Andreas has fought so hard but sadly not all heart cases are able to be repaired. Emotionally this is limbo for all involved, we know what the outcome will be but are blessed to have Andreas to enjoy and are fortunate for his quality of life.
Financially the associated costs are extensive, even with full private health cover we have now used all our savings for Andreas. We had the unexpected surprise at birth of being transferred to Melbourne for 7 weeks straight. Every month we fly to Melbourne for 2 nights for an ECG, ECHO & review. Andreas is susceptible to infection and is home bound.
The care needs for Andreas are extensive. 12 medication doses daily at 7am, 8am (2), 9am, 2pm (2), 6pm, 7pm, 8pm, 9pm, 10pm. He needs 8 daily 1hr pump feeds every 3 hours through a tube in nose (NG) which I change. The pump feeds require supervision as the tubing is a strangulation hazard, feeds are at 7.30am, 10.30am, 1.30pm, 4.30pm, 7.30pm, 10.30pm, 1.30am & 4.30am. I expressed breast milk every 2 to 3hrs daily for feeds. The care of Andreas results in 3hrs to 5hrs broken sleep every 24hrs for me.
On January 12 Andreas was admitted to Melbourne Children’s Hospital with a Viral infection, Bacteria in blood & a Urinary tract infection 8 days unplanned but is now back home and doing well.
We are so grateful to the family, friends, our chosen medical team & general public who have provided prayers, support, donations, gifts & messages for Andreas. We are so moved by everything and how Andreas touches all who come into contact with him.
Andreas is back to Melbourne to the Royal Children's Hospital again this month and the family are struggling financially to keep up. We have started a fundraising site on MyCause and if I could ask you all to donate anything you can afford, it will go a long way.
ANDREAS NEEDS A MIRACLE
Or pop on over to our little non profit page on Face Book called "Pay It Forwards - Tasmania :)
PAY IT FORWARD - TASMANIA
FUNDRAISING LINK
Thanks for reading guys...I hope this story touches your heart as much as it has mine :)
Meeg xxx
