Andreas needs a miracle
FACEBOOK PAGE "Andreas needs a miracle"
ARTICLE RUN IN THE MERCURY TASMANIA NEWSPAPER 11/2/2012
http://www.themercury.com.au/article/2012/02/11/300231_todays-news.html
Donations can be made to assist with medical expenses to the following account:
Commonwealth Bank
BSB: 067 103
Ac:10510053
Name: Andreas Sheppard
OR
At mycause: http://www.mycause.com.au/mycause/raise_money/fundraise.php?id=50175
Before birth Andreas had large hole in his heart (VSD) no one knew Andreas had Hypertrophic Cardiomyopathy which has given no life expectancy. Docs 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 & 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.
My name is Andreas Sheppard I am 8 mths, from Hobart & this is my story.
Before I was born I had a hole in my heart everything seemed fine. 9.11am on 23rd June 2011 my fight for life began. First everything looked fine, got to breastfeed from mum then the unexpected happened. I crashed & went into critical heart failure & required intubation (life support). Mum, Dad & my siblings Maykayla 12yrs, Sinead 8yrs & Soren 2.5yrs were very emotional.
Family were advised my life expectancy was only a couple of hours. Friends & family came to meet me quickly & my Christening took place. After many tears & prayers I fought hard was flown to The Royal Children’s Melbourne with Dad 12hrs after birth.
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. Mum flew over 24th June & started bedside vigil. At 7 days old in ICU, Dad held me for the first time & mum got 2nd cuddle. 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. 3 wks first bath. Mum expressed milk around the clock which I receive though a tube in my nose (NG). 5 wks my siblings came for a visit. 5.5 weeks I finally could breathe without oxygen assistance!
7 wks old I flew back to home Hobart! I fly to Melbourne every month for a check up & to monitor the progression of my heart problem. I see private Cardiologist & Pediatrician in Hobart every month. I have weekly appointments with Pediatric outpatients in Hobart. Pediatric outpatients home nursing .
Surprise admission to Mel Jan 12 8 days IV medications, rejected IV after 26hrs without a full dose of Antibiotics. Then oral Antis as I am extremely hard for IV access because my veins are so little & it is best to keep an access free for emergencies.
Gaining weight which is fabulous comes with problem my heart having to work harder to sustain my life. Docs advised Mum & Dad there isn’t much more room left for increasing my daily medicines I depend on.
My future is short & we are expecting lots more admission to Hospital I will fight on proving everyone wrong.
Thank you for taking the time to read my story, love Andreas xo
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