Welcome to our Angel's Web Page. It has been provided to keep our family and friends updated about our little one. Please take a moment to read through the journal history to familiarize yourselves with Kaelyn's progress and please sign her guest book at your convenience.
Kaelyn was diagnosed at 8 days old with a congenital heart defect called HLHS. In Oct of 2008, she completed the third of a three stage series, of open heart surgeries, to reroute her blue blood flow to her lungs, bypassing her heart; allowing for maximum cardiac output and oxygen saturation from her single ventricle. Kaelyn�s future is now unwritten, because the Dr�s are unsure as to how long her body will be able to survive on her single ventricle. Kaelyn has several GI issues and a G-tube to supplement her eating, Scoliosis and has been diagnosed with mild Cerebral Palsy, which we think occurred the night we rushed her to the ER.
Kaelyn is one of the happiest kids I know; even with all she goes through on a daily basis; never giving up the fight. Thank you for visiting her website.
For additional information regarding Hypoplastic Left Heart Syndrome, please follow the link provided below.
Kaelyn Alexandria Graham
Born: 24-5-04 @ 1722
Weight: 7 lbs 2 oz Length: 20.5 in
Diagnosed with Hypoplastic Left Heart Syndrome, 2 June 2004 Open Heart Surgery (Norwood/Sano Operation), 7 June 2004 Thorasic Duct Ligation, 29 June 2004 Open Heart Surgery (Glenn-Shunt Operation), 29 September 2004 Gastric Tube Placement, 26 July 2005 Heart Catheterization and Collateral Venus Coiling, 10 April 2006 Gastrostmy Jejunostomy Tube Placement, 14 April 2006 Cholecystectomy, Fundoplication and Pyloroplasty, 16 August 2006 Gastric Tube Placement, 16 August 2006 Heart Catheterization and Collateral Venus Coiling, 28 Feb 2007 Diagnosed with Cerebral Palsy, 6 April 2007 Heart Catheterization and Collateral Venus Coiling, 7 Nov 2007 Pacemaker Placement, 10 Jan 2008 Heart Catheterization, 12 September 2008 Open Heart Surgery (Fontan with Fenistration), 14 Oct 2008 Diagnosed with Scoliosis 5 December 2008 Heart Catheterization and TEE, 8 May 2009
For our fifth year, we are supporting the American Heart Association’s Start! Heart Walk because raising funds for research is, in part, what will give Kaelyn a future!. Over 35,000 babies are born with a congenital heart defect and CHD's are the number one cause of death from a birth defect! Please support Team Kaelyn's Kause by making a donation that will help provide this research and education to stop our No. 1 and No. 3 killers. Thank you in advance for your support! Cut and paste the following link into your brouser to be forwarded to our donation page: http://tampabayheartwalk.kintera.org/kaelynskause
Journal
Friday, July 3, 2009 1330
I know a lot of you are waiting for this update so I will not delay any further...
Our appointment with Dr Korang, on Wednesday, went well. They did another echo, on Kaelyn, and this one showed some improvement over the last. This means the Coreg is having some effect. We are cautiously excited, but the news could have been worse; so for this week, we are breathing a little easier. Dr. Korang wants Kaelyn to be on the Coreg for another month before we see him again. Her blood pressure was low; this is a definite side effect of the drug, but he hopes that during the next month it will regulate back to normal. This is important because Kaelyn is on a low dose right now and in order for her to go up on the dose (as needed) her blood pressure has to be able to handle it. It's a fine line between success and failure on this drug; but for now the first step was forward...not knowing which direction the next steps will be is the hardest on me - but we remain positive!
We asked the Dr about the drug and if this will help heal the issue at hand and if she would be able to go off of the Coreg at some point. He explained that this drug does not work that way. If Kaelyn is having positive results with Coreg she will have to remain on it indefinitely, as soon as it will no longer sustain her or if she is taken off of it, her heart function will return to the way it was before starting the drug. This is a reminder that Kaelyn's journey is unwritten and we do not know what the future holds for her; we do appreciate everything we have right now.
We are touched by everyone's support and it means so very much to us. It is an emotional time right now and we are lucky to have such wonderful family and friends around us. Best wishes for a safe and happy 4th of July!
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