The Heart and Soul Family: Eating!!

Sunday, February 3, 2008

Eating!!

Signing 'Dad", while wearing his hat.

Thanks Trudy for my wish heart bear!

This is how I pass my time!

So we have noticed that Arianna eats alot better when she is on a higher amount of oxygen. The doctors have decided to stop trying to wean her oxygen, which is currently at 1 liter, and give her GI doctor a call tomorrow. I'll be curious to see what he says tomorrow.

When she was sleeping earlier her sats were dropping when laying on her left side then stabilized when we put her on the ride side. I asked about getting another chest x-ray and once again I got pushed aside. They have now changed shifts and I'll be talking to the night docs about getting another x-ray. I am just worried about her developing pleural effusion since this is something she had after surgery and once you have it then you are more prone to get it again. She doesn't seem in pain though....so I don't know. I'm sick of trying to diagnose my daughter, I wish they could give me some answers.

1 comment:

Krista said...: Vanessa...
I can so understand your frustrations...we 1st encountered roommates in Michigan and we hated it! The doctors preach at you about keeping them away from other kids...and then they are the ones to double you up with sick kids...go figure!!

And good for you for standing up for Arianna...just remember, you are her advocate...you are doing a great job...keep it up, even when you're tired and grumpy.

I'm so sorry this has turned into such a long weekend in the hospital...definitely sending up prayers for your sanity.

Love the pictures of Arianna...she is just precious! Thanks so much for keeping up updated...I check on her several times a day!; February 3, 2008 at 10:03 PM

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Arianna Marie

Arianna was born on 11/26/06. 4 weeks premature, and weighing 4lbs 13ozs. She was born with a congenital heart defect called Tetralogy of Fallot, which is actually 4 heart defects, and was later diagnosed with an ASD. She had open-heart surgery on 5/22/06. Her surgery was to patch the VSD, patch the ASD, widen her pulmonary artery, and attempt to fix her pulmonary valve. They created a man-made pulmonary valve out of myocardium to avoid a conduit placement, which would require multiple surgeries. On September 21st, 2012 we got the news that Arianna's right ventricle pressures are too high and she needs a pulmonary valve placed. When we meet with the surgeon we found out she also has pulmonary branch stenosis and a possible defect in her tricuspid valve. He will be addressing all of these issues at the time of surgery. On October 18th, 2012, Arianna had her 2nd open-heart surgery.

At 5 weeks old she was diagnosed with a genetic disorder called 22q11.2 Deletion Syndrome, which is caused by a deletion of a small segment of the long arm of chromosome 22. This disorder has many names such as 22q Deletion syndrome, Velo-Cardio-Facial syndrome, DiGeorge syndrome, Shprintzen syndrome, and Catch 22. So far there has been more than 180 anomalies reported in this syndrome, which is highly variable from person to person and no individual has all of the anomalies. Arianna has overcome many obstacles and we find peace in knowing that God is working miracles in her life. We set this site up to share our family journey. We know that God has a special plan for Arianna and our family!

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Sunday, February 3, 2008

Eating!!

1 comment: