Tuesday, May 3, 2005

more to my story

I am picking up where I left off the last time I wrote in here. Joshua was born and taken to PICU (pediatric intensive care unit) immediately. He weighed 3 pounds 13 ounces, and his chest cavity was not developed all the way yet, so his chest looked like it sank in. I got a very quick glimpse of him before they left the delivery room with him. Within an hour I was in my room, and had his dad wheel me down to the PICU to see him (to get to the PICU there is a underground tunnel from Abbott to Childrens), and find out how he was doing. Man was I tired, but I learned really quickly how little bit of sleep or rest you need to be able to function half way. The first day was mostly curiousity and questions that were not yet able to be answered. Then on the 2nd day a world renowned retired Gynetisist Dr. Robert Gorlin came off the bench so to speak and met us at the hospital and he is the one who diagnosed him for us. That day we found out he had the 3rd thing on the list that we had during that ultrasound. Craniosynostosis, and the rarest form of it called Kleeblatschaedel, and the easier way to say it is Clover-Leaf Skull. Craniosynostosis is the premature closing of the sutures in your head. Now the reason his form was rarer then the others, is that alot of the children born with this have one or two sutures closed together, and Josh had all but one closed before birth. The only one not closed is the Squamosal. You may wonder what I am talking about, a good example is the soft spot on the top of all babies heads, if you feel it it is soft, and does not completely close for quite awhile, well that spot and more in my sons head were already closed when he was born. Dr. Gorlin then explained to us that there were 2 surgeons he felt were qualified to begin the process of helping my son survive. One was a surgeon is Kansas, and the other was Dr. Jeff Posnick.....http://www.drposnick.com/...... in Chevy Chase Maryland, he does all surgeries out of Georgetown Hospital in DC. We within a week of Josh being born, made a call to both doctors, the first one we called in Kansas (which would have been way closer to drive, as I am afraid to fly, lol) had a receptionist get back to us and was real impersonal. We were not comfortable with the feelings we got dealing with them. So we then called Dr.Posnicks office and withing a couple hours he called us back personally and we talked to him for over an hour. He happened to be from Minnesota and he said everything that needed to be said to his father and I that made us 200% sure this is the man we wanted to entrust our sons life with. Josh was nowhere near strong enough nor healthy enough to make that trip, so we just stayed in contact with him, and had all doctors notes, and CT's and MRI's and any other test done in the hospital sent to him, so he knew exactly what was going on with him at all times.  I am going to stop here for now again, I may pick up here later tonight if I have the time. Once this story is complete I will turn this into a normal journal, of thoughts and whatever else comes to mind everyday lol


jgalarza879 said...

WOW..it's wonderufl that out of two doctors, you found one that made you feel good about him taking care fo your infant son...That would be hard to entrust upon someone I'm sure!! I have had doctors do the impatient rude thing..I can't stand it!! UGH..LOL


carolsixpac said...

ok i found the story--bear with me, Im trying to find my way around here.