Ive written this blog and deleted it at least twice since we've been home and Ive finally decided that I need to at least let everyone know that we are home and Lydon seems to be doing very well for now. It took me a couple of days to get everything back in order and decide exactly what I should say. There are several things about this last hospital stay that I could say. We obviously had serious medical/respiratory issues this time which made me reevaluate a couple of things and we had some doctor issues that made me want to go postal!! Both of these things coupled together made me realize that I above anybody else on this Earth, know Lydon the best. When you are dealing with serious medical issues like this, that is harder to grab hold of than you might think. I believe that we as a society are conditioned to believe and trust in doctors and medical professionals. We also as human beings, tend to second guess ourselves at times and worry about what our peers might think of us. To clarify things, and be a little more specific, I feel that I/Lydon has a great team of doctors working with us and I could not be happier with the care he has received from the hospital and all of the nurses. However, this time the attending physician on our team had never taken care of Lydon before and insisted that he was fine and "just had a cold" and could go home. I knew better but despite my resistance, she discharged him!!! It took a lot of guts and gumption to have just been discharged and told by an attending physician he was fine to go home only to go around the corner back to the ER to be readmitted just minutes later. But, that is exactly what I did. Thank goodness for a little bit of pressure and reassurance from both Jonathan and my mom because by the time we pulled back in the ER he was in complete respiratory distress. Needless to say, I was quite upset over this incident for several days but I didnt have time to really focus on it with him being in the condition he was in. Futhermore, like I've already said, it just proved to me that I shouldnt second guess or question myself in future. I truly know Lydon the best.
As far as the last OR visit..He did great this time and we did get some answers Thank you Jesus! We found that as suspected, he does have subglottic stenosis or narrowed airway. It is approximately 15% narrowed. So, at this age, they generally do not dilate or manipulate the airway in any way unless it is at least 30% narrowed which was just fine with us. What that means for now is that we have to watch him a little closer than we were respiratory wise and have some very specific anesthesia protocols in place. We are scheduling a sleep study to see if this is effecting his breathing at all during the night. I was told there is a possibility that this could be part of the reason why he seems so exhausted and wears out so easily.
Lastly, we have an appointment on Friday with the neurometabolic disorder specialist. Hopefully we will get all of the results from his muscle biopsy which was done in Sept. We have waited a long time to try and find some explanation for many of Lydon's issues. Although, we will not be happy to hear a mitochondrial disease diagnosis, we are ready to know what is behind all of this and how we can help Lydon and move forward from here.
Say a prayer for us Friday morning. I will keep you all posted. Much love....