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February 24, 2003
2-24-04
I found the featured article about hospitals to be interesting. I can relate to it as we are there ALL THE TIME! In fact, we are going to be there even more. Not much we can do about it, but Sean needs more help.
Hearts
The reason Sean needs more help is because of a recent discovery. Well, not officially, but everyone is 100% sure. This recent discovery is a cardiac birth defect. Now cardiac birth defects are very common with VATER/VACTERL children. Now we can add the "C" to the list of issues.
The Discovery
Sean has been sick with pneumonia and we have been in and out of the ER all last week. Had chest films done and lungs are like always. Well, he still is pretty bad, so I was able to get an appt for yesterday afternoon. They did a chest film and found the congestion had increased, but there was something else pretty significant to page the Dr at home. He and the radiologist were up all night going through Sean's record and films-all 8,000 of them, to see if it should up anywhere else. It did off and on, which would suggest this Double Aorta Arch. More tests need to be done to officially confirm it, but we have been told to learn all we can about it. SO we are.
A bit of a shock?! not really. It is Sean we are talking about here. I am not angry it wasn't found sooner. Many of his issues have been found as he has grown. It does play a major role in his weight issues though. Our Pediatrician said things are finally making sense since this new discovery and the pieces are fitting in the puzzle.
I can't be depressed about this. I have other children to care for and we work very hard to keep things normal for everyone. It is very hard when Sean's health is a major distraction.
I have found if I can keep a positive attitude, I can handle things better. SO I am trying to see this an aswer and learn all I can. I have found a group already and learning quite a bit in just a few hours. Still more to go.
I need to be off. I have another child, besides Sean with pneumonia. Peter has it really bad and it is time for him to intake some fluids since his output is 0. If he this doesn't change by Thursday, he will be admitted.
Cheers!
Shelly and Sean
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