Whew....

HI everyone- it has been a long and weary weekend. Dustin will sleep good , have a terrible time breathing, have a great afternoon and then downhill for 4-5 hours. T granulzrization basically occludes his trach whereby they are not able to suction him. It takes every fiber of his being to breathe the short gaspy breaths. Many times he didn't think he was going to make it, and one of his words this afternoon was "let's just stop".

The whole problem is that no one wants to come on the weekend and do the emergency surgery that he is scheduled for on Tues. Apparently all of the ENT guys are at a conference. The team on the floor did absolutely everything possible to get them to move him to ICU so at least they could have one on one nursing with him.

Tbe problem for them not taking him or doing the emergency surgery was that his oxygen saturation and other stats were perfect. They called the "RAT" team at several different times, (an emergency ICU team that comes on demand) and you could look at this kid and see total paleness, eyes rolled back, gasping for breath but his stats looked fine. It is like trying to make a legal case when you know they are guilty as heck but no real evidence. They did not take him into ICU, no surgery and now we are just hanging in there until tomorrow when all of the doctors will be back.

The whole team from respiratory to nursing, to nursing managers, to the VA advocate and on and on have documented his need for surgery, so we are believing it will be tomorrow. At that time they can clear out the excess tissue in his trach and do a big bronch to clear out all of the secretions that have ben building up over the last several days.

I may sleep in the hospital tonight to be another pair of eyes watching his stats. IF his murse baths him and does the night routine and Dustin goes back to sleep I hope I can go to my room and get some real sleep and a shower before tackling tomorrow. They tell me it is a lasar down the trach to burn out the tissue and it takes about 20 min. Apparently your throat is very sore after this but it will be a piece of cake after not being able to get his breath and the energy it takes to rise aboe all of that.

Please pray that the surgery will be performed first thing tomorrow and that every person that has anything to do with his treatment is there by the express permission of God and with His wisdom to do the job. Also that there would be minimal (or no) sore throat and NO complications. Everyone here has been great over the weekend and I appreciate their care. Dustin is like their little mascot and they seem to really care for him.

Going back ot check on him but do need the prayers. Dustin and I did have a wonderful time sharing some scriptures that were talked about at the Vineyard church I have been going to when here. There were a few prophetic words that really spoke to my heart and the title of the sermon was "Deeply Rooted". It could not have been a better topic for me this day. I am holding up, much better today than yesterday. It is amazing what hearing the Word does for you.

Blessings to all
mary pat