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Pulmonology, Travel Plans, Headphones, New Friend

posted Oct 17, 2012, 11:30 AM by Manny Wilke   [ updated Oct 17, 2012, 11:34 AM ]
I did something yesterday that I never, ever or rarely do. I let Nate take Manny to a doctor's appointment. Not just any appointment, but a new appointment at the American Family Children's Hospital with a Pulmonologist. I realized what a control freak I was when I was deciding if he should take him. I couldn't get out of work and Manny has a boat load of other appointments and then with upcoming surgery - I really needed the help. Of course, it went well and they both did just fine. Manny got to "play video games" during all of the extensive breathing tests. In the end, they believe it is his Tracheamalasia (compressed trachea) that causes his throat cords to bounce off of another causing him a frequent, croupy uncontrollable cough. This Tracheamalasia is due to his TE Fistula from birth. We will try a new nebulizer Rx and see what happens. I thoroughly enjoyed that Nate called me on speaker phone during the appointment to answer some questions and then the doctor called me later that afternoon to recap the appointment. I gotta admit...I was very thankful for both and it also made me lol a little. The bad news is that Nate took him to McDs for lunch and got an orange drink, to BW3 for dinner and got a Coke and then went to "the clothing store" as Manny called it (aka Walmart) to get him the camo sweatshirt that I wouldn't let him buy the other day. Needless to say, Manny will never want me to take him to an appointment again. I typicall just pack a lunch and we go right back home afterwards. Isn't mom fun? But, we aren't sure if Nate will be heading to California for surgery yet or not so I'm glad they could share some special medical appointment time together.
 
I've spent the past week trying to coordinate the travel plans for this quickly approaching upcoming surgery, now scheduled for November 5th. We have to leave on the 31st now due to pre-op on the 1st. Manny and I are hoping to fly home after surgery instead of sitting in California, and then fly back for the post-ops. This would benefit all. We are over and done with that whole situation and if we can be at home, that is definitely ideal. We have been trying to keep surgery quiet around the house. I brought the suitcase out as I like to pack for a long time so I don't forget anything, but when the full moon came out I put it back out of site. It has been a wild couple of weeks making so many medical decisions, getting different input from people, doctor appointments, conference calls, insurance paperwork, etc. Last week we had a local ENT appointment, this week was Pulmonology and Audiology at Children's Hospital in Milwaukee to get different hearing aids to snap into his head (BP100 vs Ponto Pro), and next week a surgery pre-op booked with our pediatrician. I didn't sleep for about a week but now I'm getting a little with most of the situation under control.
 
We recently purchased fancy bone conduction headphones over the internet. In fact, they are popular with triathaletes because they can go in the water. Swimmers use this to listen to music while they swim. When Manny put them on his head, plugged into an ipod, he smiled bigger than I've ever seen. See Photos>Surgery 8-8-12 (he's not smiling in this one...I missed it on camera!) Please realize, he has never been able to use headphones properly since he cannot hear well through his ear canals and the headphones don't stay on his ears well, as his ears don't bend. These will be great for the airplane and everywhere else you need headphones, including school when they listen to books on tape. But, the next morning, Eli had cut out a fancy pair of headphones he wanted for Christmas and I was like - give me a break - which was followed by major tears. I later realized what it was all about.....I didn't put the two together. Dah. When Manny asked me later on why his brother was upset, I explained to him how his siblings may be jealous of him sometimes....there are no TMHTM t-shirts for his brothers. They don't get cards, prizes, and fancy headphones like he does for being so brave and going to so many medical appointments. I'm not sure why I had such a grown up conversation with him, but he often has an old soul and I forget he is only 6.  Manny sat there quietly and then finally said for the first time.........."Mom, why was I born without ears?"....silence....."I'm not sure, Manny, that is just how God made you so special. You have awesome ears now and we keep going to California to make them even better and better. It is just taking longer than we thought, things are a little more complicated too, but thank goodness you are so strong and brave and your doctors are so smart." And that was the end of that. For now.

 
I received a cute note from a mom of 3 whose youngest child has microtia. She came across Manny's website. There were many things I could relate to in her message, as with all of the parents with whom I talk to. At the end of her note it said "Anyway, I just wanted to share that your site was inspirational and relevant for me. I was happy to find it. God bless you all as Manny discovers his world in a whole new way."
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