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Austin F.’s Story

Welcome to Austin's pages.

Austin was born with Down Syndrome at 37 weeks. Over the years we have learned he also has Hirschsprungs Disease, neaurogenic colon and bladder, Epilipsy, and asthma. Austin has spent many, many nights in the hospital and has had over 40 surgeries, 5 of them have been major surgeries.

We formed these pages for you to follow Austin's care down this road of life God has given him. It has and may continue to be a bumpy one, but with all your thoughts and prayers, it's much easiers to travel. Thank you and God Bless each and everyone.

Latest Journal Update

Cystogram today

Today we headed to Syracuse for Austin's cystogram. He has had many of these so we thought it would be a piece of cake. I was even bragging to child life how awesome Austin does.

Things didn't start to well when registration told us we needed to head up to surgery. I questioned her because any other time its done right in radiology. She even called and confirmed we were to head to the surgery floor. Right then I knew things weren't going to fly to well with Austin. I was right. When we got there he realized where we were and wouldn't walk or even let me take his shoes off. The nurse came in, gave us a gown and said she'd be back in a minute. Austin was not going to get in that gown for the life of him. Finally a different nurse came back and asked me if I knew what was going to happen and if Austin has ever had a cysto without anesthesia. Told her all the time because we cath through his mitrofanoff not from below. She then said that was why we were there, for anesthesia. That's when I bragged Austin up on how well he does with the test. They then decided to move us down to the radiology waiting room. There was no need to be in the surgery wing.

So Austin screamed through the whole test. Took 2 nurses to hold his legs and child life plus myself to control his upper half. The tech asked allot of questions about previous cystos4. Grade 1 meaning mildest reflux up to grade 5 being the most severe. Grade 4 means urine refluxes all the way up the ureter with dilatation of the ureter and the part of the kidney where urine collects. On a good note, they will be fixing this when he has his surgery Feb 10th.        

Speaking of the surgery, we leave in 2 weeks. I really haven't begun to pack. I know I should, but I keep saying to myself I still have plenty of time, when really I don't. We leave Feb 5th. Plane leaves at 11;46am, we have a 2 hour lay over in Philly and then we should land around 5:15pm in Cinci. Please at Austin to your pray list. Going to be a long 2 months. Again thank you for all your continue prayers and for traveling with us down this crazy medical road. So good to know we have many following us.

God Bless.   

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Comments

5 Comments

Carol Rebhahn
By Carol Rebhahn
Finally found the site again! Missed the updates. Bet you are glad this will be happening soon and recovery to follow.
Mega prayers keep coming your way, for Ausin and for you as well! XOXOX
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Joyce Nosker
By Joyce Nosker
So sorry that Austin was traumatized upon his arrival to the hospital for his cysto. I believe he would have been ready for a cysto as usual had the side trip to surgery had not happened.

Praying for the upcoming trip to Cincy.
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Becky Pulley
By Becky Pulley
sorry for the mix up in the test. We continue with prayers for your sweet boy and for all of you
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Maresa Visel (AliMama/Downsyn)
By Maresa/AliMama
Poor Austin--sorry the test was so hard. Sending hugs and prayers--

Maresa
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Andrelei Grisnich
By Andrelei and Dustin
You're in our thoughts and prayers. That's going to be one long haul! I hope it all goes well for you guys! Take care!
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