So last week, I informed all of you that Payten was still having health issues and that the Doctor was not sure what it was. So.....the winner is.......drum roll please.......She has an infection in her TRACH!!!!!! The X-rays Dr. Panesar sent us for came back clear and therefore did not need to have a Bronchoscopy done on Payten to flush sinuses and lungs out. Yay! That is good news, but it is sad news that she is sick with a bacterial infection. At least it is bacterial and NOT viral. We can treat it and hope that it clears quickly, so she is on MORE antibiotics and steroids to help her get better and stay out of the hospital.
We saw Dr. Mancuso on Thursday and we discussed EVERYTHING Payten has been experiencing since he saw her in June. That Poor Man, what he has to deal with from me!!!! At least he is extremely patient and just listens and takes notes, I love all my doctors and their patience!!!!! They put up with so much from me and are so kind about it! Thank you all!!!!
Anyways he didn't really have any answers as to why anything is going on with Payten. But what's new, who really has answers? No one and that is okay, frustrating, but okay. The only thing he noticed was her breathing. It was not normal! She would take long pauses and then a deep breathe, then long pauses, deep breathe, etc. So he scoped her in his office to see if there was anything blocking or irritating her airway. Nothing! It was clear and beautiful. He said he did not see any sign of irritation or infection in her nose, throat or ears so he had no reason to put her on antibiotics, but he wanted me to call Dr. Panesar and find out the results of the trach aspirate culture because her breathing was worry some. And that is what I did. I say thank you to Dr. Mancuso for giving me that extra push to call and bug Dr. Panesar because we treated Payten's symptoms that much sooner, than if I would have kept waiting for Dr. P. to call.
I always go back and forth on whether or not to call and bug my doctors. I hate feeling like the annoying Mom all the time. But I am glad I called because Payten got worse later that day (Thursday) and yesterday (Friday) she was struggling with her Oxygen Saturation's, etc. Today she seems to be doing a little better so I think the medications are helping. If I would not have called and bugged Dr. Panesar we might be in the hospital today, so, Thank You to both Dr. Mancuso and Dr. Panesar! You are both GREAT Doctors and you always help in every way you can! We love you guys!!!!!
Also at my appointment with Dr. Mancuso, we discussed a test that was done in the hospital the last time Payten was there which was August 16th through the 18th. It was a BAER Test (Brainstem Auditory Evoked Response Test) I thought we were getting a ABR Test (Auditory Brainsteam Response Test) I don't really know the difference to well between the test, all I know is that the BAER test is a more extensive look at the brain and the ABR is more extensive look that the Auditory function. I requested the test to be done because there have been questions and concerns about Payten's hearing, by myself and by therapist's. And with Payten's Diagnosis' she has a great chance of becoming deaf and blind so I want to look at both areas and make sure everything is okay. I still need to get in to see the Eye Doctor, but I am working on it. I figure one step at a time. At least we are addressing one of the area's for now!
I am happy that we got the BAER Test done because it showed us some good things. It showed that the nerves in her ears are functioning properly, but there is a significant slowly between the ears and the brain. What does that mean, no one can really tell me. Neurology said that her hearing is fine, but when I talked to Dr. Mancuso he said No, this can indeed be a sign that the hearing is affected, but he can't tell with this type of test. He went on to say that even though the nerves in the ears are functioning properly we do not hear with those, we hear with our brain and so therefore if there is a problem with the brain function then the hearing could indeed be affected. So right now all I know is that the BAER Test is abnormal in the sense that the brain is not functioning quickly/properly with the messages from the ears. Dr. Cook our Neurologist said that this could be due to her Neuro-Transmitter Disease or it could be due to her Brainstem not developing and in six months we will repeat the test and that will show us if it is her disease or her brainstem.
But I am not okay with this. To me this is not a good enough answer. I am not the mom that is going to wait! I want an answer as to how this affects my child. How is her hearing affected? What does the slowing mean? Can we fixed this? What does this mean Therapeutic wise? Will she be able to communicate? Is it more processing than hearing or vice versa? These are all things I want answered. And I thought that with this test Dr. Mancuso might be able to give me some of these answers, but he can't. He did say that from what he could understand from the test, Payten could suffer from a disorder, he gave me several names of some disorders it could be, but with him leaving a message through his messaging service, I could not understand/hear clearly what those names were or ask him to spell/repeat it for me. So I am unable to let you know what those disorders are, until I talk with him again and get those names. He also said to fully determine if she suffers from one of these disorders we would need to do further Audiology testing, but he did not tell me how to get those set up. So I need to call him on Monday and BUG him as to how we can further pursue this matter, because I do not want to ignore this. If there indeed is a problem I want to know and fix it, that is if we can! I hope that we are just being overly cautious and that there is nothing wrong, but all I can say is when I got the results of the BAER Test my gut told me that there was something more wrong and I needed to push the issue more and that is what I am doing. Please pray for Payten in hopes that we figure all of this out and can help her with whatever we find! Much love to you all and God bless!
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