Yesterday afternoon, we had a family meeting with the PICU MD's and Dr. McGinley, Ian's pulmonologist. ENT was not able to be at the meeting, however, they did stop up earlier in the day while I was at work, so Brian and ENT called me to have a phone conference to answer some questions. After speaking with ENT, Brian and I were able to have some time to chat before the family meeting. In some ways it was a difficult decision while in other ways it was not...Ian will get a tracheostomy tube. During the family meeting, it was thought this would happen next week; however, the ENT, Dr. Tunkel, has an opening tomorrow at 9:00am...so....as Ian will be in the ER for this, GI will also be involved to change his GT over to a Mickey Tube. Ian will remain in the PICU for 5 - 7 days after surgery and then will be in transferred to rehab for a while for tracheostomy training for Brian and I...oh yea and Ian. For Brian and I, this has helped to provide some closure with the daily back and forth of what will be next and when we can get Ian home. We are still looking at the potential of a few months before this will happen but there is a light at the end of the tunnel; we are hoping once we chat with Ian later today we can provide him with that light at the end of the tunnel as well.
With the tracheostomy, Ian will still be able to do everything he was doing before hand, if not more. We have spoken with other families whose children have gotten them...they have told us they have seen the "twinkle" come back into their child's eyes. As well as the spunk...for those of you who know Ian well...that "twinkle" and spunk have slowly left...we are hopeful that it will come back. Ian should be able to speak and eat with the trach...that will take some time due to healing and training but we are looking forward to the little boy who used to talk your ear off, talking it off again.
Ian just had a work out...physical therapy just came in and got Ian into his wheelchair for a very brief time...he could not get comfortable in it today...so now he is back in bed. I am going to go sit with him...
We will do our best to keep everyone updated tomorrow when everything is done.