Monday, October 18, 2010
Trying to keep upbeat
So..we are still here. It has been a Loooonnng week of basically not much progress towards pacemaker or biopsy because everyone wanted to moniter him. So now things are changing a bit. It does not look like a pacemaker is part of the plan right now since he has not had any of his big bradycardia events since coming here and they are hoping the medicine is doing its job. I am pretty sure we are not through with the episodes but since Jason and I are not wild about puttinghim throught the surgery for the pacemaker either than we may be ok with holding off to watch longer for problems. of course if this was an adult having these random sinus rythems they would be placing the pacemaker right away.. but it gets a bit more complicated with him being an infant and his past behavior under anesthesia intubated. So..we are back to square one. Then I found out today that the mito specialist that we had applied with is wanting to see sam for the consultation on wednesday and follow with the muscle biopsy at this hospital's sister hospital (CHOA at scottish rite) on thursday. I may have been unclear in my posts in the past... we don't know that sam has a mitochondrial disease.. it is just the theory they are looking into with further testing at the moment. So I guess we will be discharged from here soon and will probably stay at a ron mcd house during the week till ready to head home. I am missing home soo much and Jason has been really carrying the load back there between the girls and everything else. One day at a time. I just need to try and stay upbeat about everything and not get down. I am sure everything will fall into place.