MIKolbe Posted February 3, 2009 Share Posted February 3, 2009 Hello Pham- I write this with a heavy heart, some tears, and much hope. You may or may not have read a previous thread about our daughter, Addison Marie, and her pretty miraculous story of coming into the world. I cannot find the thread readily, but it's here. Well, if my family could impose upon the pham for more prayers, it would be greatly appreciated. I lost my job mid-Dec. after 11 years. Though I am under contract not to speak ill of them, I feel the serverance was less-than-equitable. Luckily, I am a workaholic, and had stored up about 240 hours of vacation. They advised that we would have medical insurance through the 31st, so we got everyone to the Dr. Addie was a little congested, but we did not think it was in her chest, but thought it best to get it checked out. Peyton had a sore throat, and we wanted to check for strep NOW, rather than wait for it to come to fruition. Luckily, Peyton's sore throat was nothing needing meds or anything other than rest and plenty of fluids. Addison's congestion was not in her chest, as the Dr. said her lungs sounded fine. However. He kept listening to her heart for a long time. A really long time. Long enough for Shea and I to look at eachother and long enough for a modicum of panic to initially set in. The Dr. said it sounded like she had a heart murmur. SOUNDED like. He said it could be a kink in the vessels going to or from the heart, much like the sound a hose makes when you turn the water on and you kink it. It could be a hole in the heart.. it could be an innocent murmur, which for the life of me, I forgot what that was. So the next step is to get an EKG and an echo (eco?). Mind you, we are trying to get this all done before the 31st. Shea steps up, like only a mom on a mission can, and coordinates the whole thing, almost selling the medical center on seeing Addison whenever possible. 'Are you SURE there is nothing open??' Things like that. Needless to say, I lucked out and married a woman who doesn't know how to fail and who thinks 'no' is an unacceptable answer. So appointments are made and kept. Unfortunately, Addie is a baby and prone to figiting (sp?) and squirming and such. The tech says she has what she needs, though. Fair enough. We make the appointment to see the pediactric cardiologist. He listens to Addie, and says it sounds like a hole. He puts this thing on her finger to gauge the o2 levels, and they are good. He diagnoses her with ASD (Atrial Septal Defect), basically a hole in the heart. But the echo was not good enough to determine the size. (the same echo the tech said was good enough). The wrath of my wife ensues on the medical clinic, and the ped. card. will now do the echo himself, personally in his office. At this point, we are past the 31st, and will most likely rack up some medical bills. Interestingly, in CA, because I have a 401K, we do not qualify for Med-i-cal (a form of 'free' healthcare). 401K is an asset and thus we are too 'well off' for med-i-cal. We only want medical care for the girls, especially Addison. CONVERSELY, there is a quasi-governmental program called Healthy-Families. Addison does not qualify because with my unemployement, i do not make ENOUGH to qualify. So we have too much for one, and not enough for another. figure that out. Last Friday was the appointment. I was out of town for a job interview in PA. I mistakenly said that week was open, and, seeing how I am out of work, I really do not want to 'muddy the waters' with this possible employer. I asked my mom to go with Shea, because, if it is bad news, I do not want her alone. I get home around 1am friday nite- saturday morning. She is on the couch sleeping with Addison and Peyton. The Dr. did the echo personally, and there is a 1.3cm (.5") hole in Addison's heart. She is 6 months old. The Dr. called the hole 'extremely large' and confirms the diagnosis with the addition - Large Secundum Atrial Septal Defect. Open heart surgery is the only option. While the Dr. said it is not an emergency situation, it is urgent, quite urgent. He is presenting her case before the board of Loma Linda Medical Center tomorrow. He said in her case, the presentation to the board is more of a formality, as she just needs the surgery. Because of the size of the hole: 1) they cannot wait and hope for it to close on its own. From what I have read this can and does happen alot. 2) they cannot go through a cath in the leg and mend the hole intraveniously. The Dr. said they will crack her chest, stop her heart, put her on bypass, and mend the heart either with material from the outside of her heart or some bovine derivative. Needless to say, we are scared. We trust, but we are scared. Maybe that doesn't make sense, but it's the best I can explain it. How do you deal with the fact that your daughter's heart will be stopped? How do you process that? We explained to Peyton as well as we could. She understood, but partially. At the time, Shea's sister called and Shea was telling her. Peyton heard, and understood (kids are smarter than we give them credit for) Peyton cried and cried. We assured her everything would work out and her sister's heart would be fixed. Right now, I don't know what else to say. We have cried so much, we feel numb. I will update as information permits. Please pray. Thank you - Jason Link to comment Share on other sites More sharing options...
rose wrought of iron Posted February 3, 2009 Share Posted February 3, 2009 oh, no... prayers Link to comment Share on other sites More sharing options...
dominicansoul Posted February 3, 2009 Share Posted February 3, 2009 a friend of mine has a son who was born with a hole in his heart. He's had surgeries, and is now a spunky 13 year old guy playing football... prayers for you friend, it ain't an easy thing to go through, but you know Addison, Shea, Peyton and you have all of our prayers!!! "Mary, take over!" (Our Lady works miracles....) Link to comment Share on other sites More sharing options...
Arpy Posted February 3, 2009 Share Posted February 3, 2009 Prayers! Apparently St. John of God is the patron of heart patients, so I'll ask him too. Link to comment Share on other sites More sharing options...
Lil Red Posted February 3, 2009 Share Posted February 3, 2009 +J.M.J.+ jason, there is much they can do now with holes in hearts. i have much confidence in the doctors and in the Lord to guide their hands during surgery. my friend (when his son was close to addison's age) had multiple heart surgeries, and today is a healthy junior higher! and that was 13 years ago! just think what they can do nowadays with technology. on a personal note, i will be praying for the intercession of my deceased brother on your behalf (as i am sure he is in heaven, for reasons i will not go into here). if you'd like to as well, his name is sean. i've also asked my parents to pray for you and shea. God bless you and hold tight to momma Mary. Link to comment Share on other sites More sharing options...
XIX Posted February 3, 2009 Share Posted February 3, 2009 Jason, You have such an incredible way of stating these things. I wish you had some easier news to give us, but I want to thank you for sharing this journey with us. It's kind of incredible to hear the way you describe everything. I'm definitely praying for your family. Link to comment Share on other sites More sharing options...
IcePrincessKRS Posted February 3, 2009 Share Posted February 3, 2009 You know my prayers are with you, Jason. St. John of God is the patron of heart conditions. Link to comment Share on other sites More sharing options...
hoosieranna Posted February 3, 2009 Share Posted February 3, 2009 All of my prayers, friend. Link to comment Share on other sites More sharing options...
prose Posted February 3, 2009 Share Posted February 3, 2009 Wow. I am not sure what to say. Prayers for sure. Is there any loopholes in the medical coverage? I wish you lived here. Prayers for you and your family. Link to comment Share on other sites More sharing options...
Luthien Posted February 3, 2009 Share Posted February 3, 2009 Definantly have my prayers... Link to comment Share on other sites More sharing options...
cmotherofpirl Posted February 3, 2009 Share Posted February 3, 2009 Prayers to St John of God: [url="http://www.catholictradition.org/Saints/john-god.htm#Litany"]http://www.catholictradition.org/Saints/john-god.htm#Litany[/url] Link to comment Share on other sites More sharing options...
icelandic_iceskater Posted February 3, 2009 Share Posted February 3, 2009 many, many prayers headed your way Link to comment Share on other sites More sharing options...
CatherineM Posted February 4, 2009 Share Posted February 4, 2009 Prayers for all of you. Link to comment Share on other sites More sharing options...
MIKolbe Posted February 4, 2009 Author Share Posted February 4, 2009 We just got news that the Dr. made presented the case early and we have an appointment at Loma Linda on Monday morning with the Dr. who would do the surgery. Link to comment Share on other sites More sharing options...
Christie_M Posted February 4, 2009 Share Posted February 4, 2009 You and your family are in my prayers. I hope everything goes well with that appointment Link to comment Share on other sites More sharing options...
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