Update
Sunday, July 6, Sam was transferred from Harborview to Children's Hospital. He was determined to be stable enough to be moved and the ambulance was available so after spending the morning getting all the paperwork together he was moved in the early afternoon. The staff at Children's has been absolutely fantastic for the most part, very communicative and always available to take the time to pause and explain fully what they're doing, why they're doing it and what all the machines and readouts mean.
This past Tuesday evening, July 8, Sam had a pacemaker placed. Between Monday and Tuesday his heart stopped five times. Four of those caused loss of consciousness and required chest compressions to get his heart restarted. He also needed to have his left lung re-inflated as it had collapsed completely during the course of the day Tuesday. We were very lucky in that everything and everyone necessary to have the surgery happen immediately was available right then. Sam is healing quickly from that surgery.
Yesterday Sam spent a good portion of his day sleeping after working on improving his lung strength on Wednesday. Yesterday also saw Sam give us a great Huzzah!! moment when he moved his feet in his sleep and then later in the day moved his right leg. Both were "non-reflex" in that they weren't twitch muscle movements in response to outside stimuli.
We're currently waiting on the coordination of the ENT and GI departments so we can get his tracheostomy and g-tube surgery scheduled. That will probably not happen until next week. I know that having both those appliances placed will improve his morale significantly as the only place he can feel 100% of the time is on his head/face and having a tube up his nose and in his mouth for food and breathing is a huge irritation to him (especially as it severely impacts his ability to communicate ~ that boy loves to talk!)
sqtristan is currently with him at the hospital while I'm back up at the farm getting things done that need my attention. As always, all of your good thoughts, energies, prayers are completely appreciated. They're doing Sam an enormous amount of good!
Love you all.
~Jeni
This past Tuesday evening, July 8, Sam had a pacemaker placed. Between Monday and Tuesday his heart stopped five times. Four of those caused loss of consciousness and required chest compressions to get his heart restarted. He also needed to have his left lung re-inflated as it had collapsed completely during the course of the day Tuesday. We were very lucky in that everything and everyone necessary to have the surgery happen immediately was available right then. Sam is healing quickly from that surgery.
Yesterday Sam spent a good portion of his day sleeping after working on improving his lung strength on Wednesday. Yesterday also saw Sam give us a great Huzzah!! moment when he moved his feet in his sleep and then later in the day moved his right leg. Both were "non-reflex" in that they weren't twitch muscle movements in response to outside stimuli.
We're currently waiting on the coordination of the ENT and GI departments so we can get his tracheostomy and g-tube surgery scheduled. That will probably not happen until next week. I know that having both those appliances placed will improve his morale significantly as the only place he can feel 100% of the time is on his head/face and having a tube up his nose and in his mouth for food and breathing is a huge irritation to him (especially as it severely impacts his ability to communicate ~ that boy loves to talk!)
sqtristan is currently with him at the hospital while I'm back up at the farm getting things done that need my attention. As always, all of your good thoughts, energies, prayers are completely appreciated. They're doing Sam an enormous amount of good!
Love you all.
~Jeni