I'm not quite ready to talk about his transition from Jefferson to Dupont...that was so emotionally difficult for me to deal with and I am still processing it. It was so hard to take him away from somewhere that was so wonderful to him. The staff at Jefferson helped to bring him into this world as safely as possible and took amazing care of him- we are so grateful to everyone there.
Here we are with him before the transport team got to Jefferson...
And here is the stretcher and isolet that he was taken to Dupont in.
Here he is in his isolet with me saying (blubbering) my "see you soon"
It took me about a half hour after Isaiah left to go through the discharge process before we were able to hit the road and make our way to Dupont.
We were starved for lunch but I just had to see him and make sure he was ok so Dave dropped me off at the door and found a parking spot. We checked in and got ID badges and we made our way to the NICU where we found him wide-eyed and trying to figure out what was going on...
We got to meet with Dr. Bober who looked him over. We have to wait for the results from the blood work, but the doctor believes Isaiah has type III OI- this is based on the bowing of his long bones as well the shape of his head and the color of his sclera. Although he has a lot of breaks, when Dr. Bober removed his blankets and clothes, Isaiah was only hesitant to move his right leg. This is a good sign- it shows the other limbs aren't hurting him as much, maybe due to healing, maybe due to the morphine.
We talked at length with Dr. Bober. They are going to keep monitoring him and really spend the time getting to know him. If all is well, PAM should start on Monday. We're hoping he won't have any of the side effects that come with it (flu-like symptoms, possible respiratory issues) and that he will reap the benefits immediately (often times the pain relief comes within the first day of treatment- which means they could get him off the morphine).
He's taking baby steps. He's been doing part of his feedings from the bottle and part is still through the tube. He was off of oxygen for a bit yesterday but had to go back on as his saturation level went down. Today it's looking optimistic that we'll be able to try again.
Being here at Dupont means we are one step closer to bringing him home...and that is a wonderful thing.