We took Mitchell down to Mayo this week for our 2nd opinion on his airway and trach. We had a great appointment and yet you will probably read this and conclude that we really know nothing more than when we went down there.
I guess I could start off by saying this is the doctor we’ve been waiting for. I feel that IF Mitchell is capable of getting his trach out- she is the doctor that will get it done. I also feel that IF she feels the trach will be for life, we’ll be at peace with that coming from her, as we’ll know that we’ve done everything we can.
So what did we hear? We didn’t get a “yes his trach will come out” nor did we get a “he’ll have his trach for life”. Dr.Thompson didn’t want to say anything until she looks at all aspects of his airway. She did a scope right in the office. Mitchell did well with it. She went through his trach and then went through his nose. This allowed her to look at his upper airway as well as his lower airway. There are a few more pieces of the puzzle she wants to see before giving her advice.
The upper airway: this looked good. She agreed that the laryngalmalacia has indeed resolved. She also saw that Mitchell’s tonsils are huge and will have to be taken out at some point. This we did know, but really being he is a neck breather wasn’t too much of an issue. However, now that I’ve seen them and started thinking about it; I’m wondering if this may be the root of some of our infections he has. We’ll talk with Dr.Welle as well as Dr.Thompson about this. She also saw that he has a narrow nasal passage, which is due to his cleft. (We knew that as well)
The lower airway: This is what is below the trach. In my unprofessional opinion-it is a mess. It is collapsed below the trach and then again in the left bronchial. She felt that until she sees the area where the trach is covering, she cannot judge if this is tracheal and bronchial malacia. She thought that the collapsing in the bronchial looked suspicious. Therefore she will also have a CT scan done to make sure that Mitchell’s anatomy is where it needs to be-basically make sure nothing is pressing up against that bronchial. We have been around this before with his doctors here, but we also can’t shake the feeling there is more to this than just the malacia-which is why we are at Mayo. She also saw a good amount of granulation tissue. We knew that he had some granulation tissue and it isn’t uncommon for trached children to have this. However, she felt that the reason for the granulation tissue was because his trach is rubbing against his trachea. This was a little upsetting being this has never been mentioned to us before. She also felt that the reason the trach was rubbing was because we put a 2x2 under his trach to prevent chapping and rubbing of the trach on his skin. She said that even though it doesn’t seem like it would move the trach all that much-just having that small 2x2 under there changes the angle of the trach enough to cause internal damage. This for me was the most disappointing news being it is something we could’ve prevented had we known.
We talked about so many things I just cannot even remember them all. It really was very overwhelming and exciting. She spent over an hour with us and some of that time was used to go over medical records I had sent. She is an aggressive doctor and yet very cautious as well. She is also extremely thorough. She will not take that trach out until she is certain everything has been looked at and are working as they should.
She wants Mitchell to see a gastroenterologist to take another look at Mitchell’s reflux. We need to make sure that that isn’t causing further damage to his airway.
We are doing a lot of repeat testing, but I feel that it is well worth it, especially since the first test (in office bronch) already showed us something we did not already know. She did offer to do this next procedure on Thursday but I felt that Mitchell had been through enough and just coming off of an illness felt that he needed to be given a bit of a break. She respected my decision.
We may not get this trach out and though we’d be a bit disappointed, we will be at peace with that decision. After seeing what his lower airway looks like-I am shocked that he does as well as he does. I also just can’t believe that it has not changed one bit sense the last bronch we got to view-a few years ago. (going off of memory) The images were still very shocking and seemed to me just as bad which again leads me to believe we are dealing with much more than the malacia. I can’t imagine being able to “fix” this to the point where he could go without a trach, but I guess that is why I’m not the ENT. I have no doubt that if there IS a way to correct this, she will be able to do it or will direct us to someone who can.
That is what we learned..and much much more. I felt the trip was well worth the drive. We will be setting up these other tests in June and they will try to lump as many things together as we can. They can be long days and now throwing anesthesia in there scares me but we’ll get through it. She seems to be a very safe doctor and listens very well. Oh one funny thing-we talked about anesthesia and I asked her what she uses-general or light sedation. She said that she uses both but that it was up to the anesthesiologist. Though she did say, “Why is there something you don’t like or that he doesn’t do well with?” I just mentioned that he couldn’t have Chloral Hydrate as we do not like that drug nor trust it. She laughed and said, “Yeah, we don’t use that here”. That made me feel a bit more at ease with bringing him in for procedures. I have to remember that this is THE Mayo Clinic, and I’m sure they don’t just hire anyone-but that doesn’t mean I’m not going to question things…I guess that’s just a mother’s job.
Annette-If you are reading this-I think we saw you on the street at around lunchtime on Monday. I stared at this lady (you I think) and should have called out your name to see if it was you—but we passed and I didn’t. SO-if you were working Monday and were out for lunch, we did see you and I kick myself for not saying anything. If you weren’t…well, guess I’m glad I didn’t say anything. We didn’t get into placement after procedures or hospitalizations, but maybe we’ll see you. I sure hope so; you wouldn’t believe how big Mitchell has gotten since you saw him last.
I will let you know what our next step is and when. We will be meeting with Dr.Welle about all of this soon. I am excited to see what he says about the trip and know that he and Dr.Thompson will work side by side to get the best care for Mitchell. We found a lot down at Mayo, not only a great doctor but also one that values teamwork-whatever the outcome; I am excited for Mitchell. I’d love to share some other fun parts of our trip, but this has gotten too long. I’ll post some more later.
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