The broncoscopy showed that his airways have improved, however Dr.W found larygnomalacia as well (soft larnyx). It obviously does not make a difference because hes had this the whole time we just never realized it. So there is nothing new as far as his treatment goes, however it makes the whole situation make a lot more sense. She also did not note this in her report of Kaesyns broncoscopy. Next time we go see her I am going to request she explain why its not, as I feel it is very important that its in his records, obviously.
So on to the rest,
ITS FALL!! We made it through the very first week of fall with no ER trips. Just as I predicted. Kaesyn started getting really sick at the beginning of this month. I took him to the Doctors, as his breathing was not doing so good, he was having his coughing spells again and he was needing his oxygen and running a mid grade fever. We started him on an antibiotic, but he just threw it up. The next day his fever went up and everything got worse. I took him to the ER. They gave him 2 shots of antibiotics, and did a chest xray. There were still some infiltrates in his right lung. He has never had a clear chest xray. We went home and he was a lot better the next day,but had his coughing attacks SOOO much more. He would have 8-10 a day. 30-45 minutes of coughing and coughing. The next Thursday he went in for his flu shot. We gave him more antibiotics to cover him for pneumonia. He still had his horrible coughing spells, but there was nothing more for us to do. He would turn really pale and his sats were below 92%. After his spell was over he would be normal and play until the next spell came within a few hours. During this time he also started to have drainage coming from his ear. Not a big concern as he was on antibiotics, and his tubes were doing thier job, by draining the infection. After it did not go away for 4-5 days and it really bothering him I took him to the Dr. We started a ear drop antibiotic and steroid. It didnt help.
Today I took him for his check up with Dr. E, our pulm Doctor. Oh my. I dont even know where to start with this. First of all, all I can say is even though Dr.E and I got off to a bad start, he makes up for it more and more EVERY time we see him.
He walked into the exam room and seemed like he was truley happy to see us. He shook my hand with a smile.He gave Kaesyn a high five and told him how good it was to see him, and he meant it. He was amazed at how well Kaesyn looked. WE then talked about his recent broncoscopy and his coughing spells. Although the report from the ENT says Kaesyn has outgrown the TBM Dr. E has no doubt that it is better, and probably looked better than last time around but it isnt completely gone, when causes the coughing episodes. He then asked how often we were doing the nebulizer and added up the time we do it 5 times a day and each takes an average of 45 minutes. He decided that Kaesyn is old enough now to get his treatments from an inhaler and it would save sooo mcuh time!YAY! He also wants a biopsy of KAesyns nose done by the ENT so we will be doing that in the future as well.
There are so many times I walk out of a Doctors office and have a melt down when I get to the car, because I feel as if it didnt go the way I wanted it, we did not get any more answers. I then think about what else I can do for my baby and think that it is just time to give up to get answers for him for the next two hours when we get home.
This ride home was so different. The walk out of the hospital was different. I felt soo confident in this appt. I felt understood. I felt like someone actually got me. I felt like I truley had a reason to be concerned. I felt like I trusted his answers and did not doubt him one time. We agreed. He reminded me just how bad last winter was and how far we have come since just last March. He is right, and we could not have done it without our amazing Doctors at home and Dr. E.
While we were with Dr. E he expressed his concern for Kaesyns ears, draining like crazy. When we got back home I took him to our family doctor office. We can not figure out why they wont stop draining after he has had a few rounds of antibiotics as well as a eardrop antibiotic/steroid. We are going to try to get him into his reg ENT asap or his original ENT, whoever can see him first!!!
Well there is my update, and Im sure its all crazy and hard to follow, its just been a long day but I Wanted to update now while I was excited how well the appt went today!!!
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