Here is the latest on my son... On Wednesday we saw Dr. Vaida (Thoracic Surgeon). He basically said what he said in the hospital, the surgery wouldn't benefit him. He still insists he has pneumonia. He talked about the possibility of Russell having a Tracheotomy at some point so we can keep him cleaned out better. I told him I wasn't sure that was the route we wanted to take. He said it would be a last resort but something to consider. I told him he has gone down hill so much this year and if he continued this pattern I didn't think he would be here in another year. He just gave me a sorrowful look and shook his head yes that he agreed with me. I asked him what we could expect in terms of how he would progress. He said probably a lot of hospital stays and bronchs. He did order another CT and a VQ scan to be done on April 2nd. He said since we live so far away he could call with the results. I told him I would rather drive and go over the results with him. He said that would be fine but then never scheduled a date. When we checked out I made sure to get a date set up.
Today we saw Dr. Wieland (Pulmonologist). I told him what Dr. Vaida said and he didn't seem surprised. He too agrees with me that he does not have pneumonia. He said he isn't 100% sure the surgery is the answer but hopefully the tests that Dr. Vaida ordered would help make that decision. I asked if instead of seeing Dr. Vaida could the two of them talk and we just see him for the results instead of Dr. Vaida, he said that was fine. I asked if after these tests if he felt certain the surgery would help and Dr. Vaida still didn't agree could we get a second opinion? He said definitely and it would most likely be at the Cleveland Clinic. He said part of the problem is that they fear he may not survive the surgery. I said I would think there would be fear of putting him on the vent and not getting him off, he said most definitely. For right now the oxygen and Bi-Pap is his best shot. He said even if he felt 100% that he needs the surgery and the surgeons were in agreement as long as he can remain stable on Bi-Pap and O2 they would hold off. I asked if it might be time to look into transplant. He thought a few minutes and said you know transplant usually only gives you about 2 years. He said Heart, Liver, Kidney etc. have a much greater survival rate than lungs. I mentioned Dr. Vaida said something about a trach. He said that could be something to look into but before he would go that route he would want us to meet with the transplant team to make sure that wouldn't mess anything up for a possible transplant. I told him we are buying a pulse oximeter. He said that would be great and he would be fine with him trying to get off the O2 during the day as long as his O2 is 90 or above. He didn't seem as optimistic as he has in the past. We will see him again on April 4th. Tonight Russell seemed to be struggling a bit. He did a breathing treatment and went on his Bi-Pap. We should have the pulse Ox next week, I'll be more comfortable being able to see exactly what his oxygen is. He will be 24 years old tomorrow. I'm thankful and sad all at the same time. He's a tough cookie I'm hoping he can prove the Dr's wrong.
, I also realize they are way not important right now.
