Aidin Patrick Ryan Rapoport
TrachKid Profile
-
Aidin Patrick Ryan Rapoport was born July 18th 2005 from an uncomplicated pregnancy. The delivery, however, was another story. It started with Aidin being 10 pounds -11 ounces. Because of his size, he had shoulder dysplasia and this caused his lungs to collapse and also caused bi-lateral pneuothorax and respiratory distress. They had trouble intubating him and finally, by the third try, they succeeded. Three days after being in the NICU of Children's Hospital In Minneapolis, MN, He was diagnosed with two small trachea tears, subglottic stenosis, and a grade 1 brain hemorrhage.
Because of the tears and the stenosis and also tons of scarring tissue from three unsuccessful extubated, we had to have a trach put in if we ever wanted to take him home. August 16th,2005 was the day we got to take our little bundle of joy home. This also introduced us into the world of home nursing and medical equipment and insurance battles.
Now we are trying to tackle feeding issues and learning how to feed a child with acid reflux and a G-tube, while trying also not to have him become dependent on it (he eats orally but just not enough and it seems the more we use the tube the less he eats by mouth, seems these things are really like a catch 22). Aidin's ENT doctor says that he could have reconstructive surgery as soon as January and after some research I now see that is a whole other journey to go through itself.
He is doing well and we have now become so comfortable with his trach that we don't even see it anymore. We do count ourselves extremely lucky since Aidin has no lung problems, no heart problems or no neurological disorders. We are also blessed that when Aidin is older he will have no memory of any of this and will live a normal life where he will be able to run and jump and play and cry and scream if he wants. He has a three year old older brother, Mycah, who is teaching him how to smile and who has also adjusted better than we could have hoped for. He helps out by silencing the machine when it goes off and by making faces at him until we can get bottles ready. We take it day by day now and sometimes, minute by minute. Aidin has only been with us for three months and it already has been such a long road with lots of sacrifices-all worth it-and we know we have many more to go. We thank god for resources such as this web site to remind us that we are not alone and there are always parents out there that are willing to share their stories, experiences and knowledge to help us get through things we never could have thought possible. All we can do is count our blessings and thank God everyday for giving us our sweet baby Aidin.
06/20/08
A final update:
Well, Aidin is going to be turning 3 next month and looking back on his page it is hard to remember and yet just as hard to forget. It seems like all of this was yesterday, waking up with the fear everyday and all the worrying combined with all the hope. but here we are. He is decannulated and a completely normal little boy, who has no memory of any of it. Often I think the whole experience was more traumatic for me than it ever will be for him. I wonder if he will ever really know what it was like when the only way we could bring this little baby home was with nurses and medical equipment that couldn't work anywhere else but in our living room but then i wonder- would I ever really want him to remember it? On that I am torn. I want him to be thankful for his health and never take it for granted and yet I would never ever want him to remember all the needle pokes and holidays in the hospital and missing his brother's birthday. God has a plan for all of us and this is the way that he wanted it - so I will trust that Aidin will remember or not remember exactly what he needs to.
Without this web-site, I dont know how I would have made it through. It was great to know that my family was not the only family having to deal with this and that meant alot. Unless you are or have gone through it, it is hard for anyone else to really know what you are going through. Just being able to vent and talk to someone who understand all the lingo and insurace rules made dealing with all the more easier. So thanks to everyone out there that I have meet through this site. Though I do not visit this site like I once did, I will never stop because it is and always will be a chapter in the Rapoport's life.
God Bless,
Kelsey Rapoport
p.s check out http://www.childrensmn.org/stories/story.asp?id=1656 for Aidin's story on the Children's web site
Kelsey.Rapoport@allina.com
History
- Blog
- View recent blog entries
- Member for
- 3 years 49 weeks
Location
- Country
- United States
- State/Province
- Minnesota
