I am sooooooo excited!!!!!!!!!

I am so excited to be sharing this news with you. Despite my sore throat and various other nasty's, I feel like jumping up and down.

Our state is a "GO" on the Guide By Your Side (GBYS) program. What specifically is this program? It is a program by Hands and Voices. Whenever a child is diagnosed as deaf or hard of hearing the information is automatically sent to the State Dept. of Health. Now, with this program someone will call the parents and ask if they would like to talk to a Guide By Your Side, which is basically a parent who has a child who is deaf or hard of hearing and has lots of information, resources, knowledge and been there. Here is a link. http://www.handsandvoices.org/gbys/testimonials.htm

I remember when my son was diagnosed at 17 mos. I was freaked out and only held it together until I got to the car and wigged out. When I left Riley's Childrens Hospital, they had given me a book from the State Department that had a lot of resources listed in it, but seriously, I didn't even know what deaf was at the time much less able to sort through all the stuff in that booklet to know what I needed and what I didn't need. The day after his diagnosis I literally called every single number in that book and told them who I was, what I was told, and asked how they could help me. I have to tell you I didn't get a whole lot of info. The whole diagnosis and stress of it all seriously knocked me flat on my face for a long time. Only a parent who has been through this, knows the feeling, guilt, hurt, and fear. I begged for someone to tell me somebody, another parent, I could call who had been through this already. Nope, couldn't do it, it's all confidential info. I asked for counseling to help me deal. I could get counseling, but I would have to drive 2 hours to get it since there were no counselors in my area who were First Step Providers, are you kidding me? So to have a program like this in our state where a parent who is just getting the diagnosis and can talk to someone who has already been there is fantastic!!!!!!

For 2 1/2 years I have searched and sought out parents of deaf children. Max's surgeon, audiologist, and even some people in the school have asked if I could talk to a parent and I have. I so much want to tell them that everything really is going to be o.k. The excitement is................ I am one of the GBYS's in our state!!!! I will get notified of a new parent to talk to. I will get to hug them and help them through the fear. And best of all I GET PAID FOR IT!!!!! I've been doing it for free all this time and still would, but don't tell the State that cause now I can get paid. Can you Hear me?

Getting Blasted

Well, I have been blasted twice for my "When does a deaf child stop being deaf?" Apparently people have a total misconception of my point, or miss it entirely.

For instance, I posted the above phrase in a place as a title to a post and people came back to let me know that their deaf child is always deaf. Yep, I know it, mine is too. However, in some things in life, I have found that decisions need to be made not because of his deafness, regarding his deafness or anything at all to do with deafness but based on the fact that he is a child. He is also a person and has thoughts and feelings like any other person and I need to respect his thoughts and feelings. He is still an almost 4 year old child so there are times when I feel that his deafness and his catching up in language and whatsoever take a back seat to him being a child and person first and foremost. I never want to forget that his deafness is not all there is about him. He has other qualities, perks, traits, and a personality that make up who he is. His being deaf is only 1 part of his whole makeup, of who he is.

I'm not willing to base everything on him being deaf and his cochlear implant. Nope, not going to happen. I base all decisions in his life regarding all factors in his life, not just that one aspect. I don't want to limit him in anyway, due to his hearing loss and I'm certainly not willing to damage other parts (psyche, personality, self-esteem, etc.) due to his hearing loss either. What's the point? What do we gain? How could he be better off if every single thing or decision is based on that fact alone? It's not who he is.......his deafness is not who he is. Don't get me wrong, I'm not shirking my duty when it comes to him using his implant to the best of his abilites, I'm not being lazy and sitting back. I drive him 76 miles one-way to school Monday through Friday. He gets pulled out for speech one-on-one 3 times a week. I bug his audiologist every 3 mos to check his maps. I sneak in AVT and language opportunities at every chance. But sometimes, he's just a boy who wants to play his Wii, and I let him.

So in my house, with my child, there are times when I base my decisions without any regard to him being deaf. They are based on his personality, age, and circumstance. Those times and those instances are when my son is not deaf, he's just a boy whom I love alot. Can you hear me?

The Countdown

Well we've been missing due to the holiday; new baby, not ours THANK GOD but my brothers and injury, me with my knee. We got the go ahead a couple of weeks ago for Max's surgery on December 11th.

36 hours before surgery Max coughs, not unusual we have a woodstove blaring all the time, we live in the woods, things have been wet and snowy, it's winter. He also takes a 2 hour nap. He doesn't usually take naps, especially not when I want to take a nap.

22 hours before surgery Max gets up extremely early for him. I usually wake him up at 6:30 am for school but today, today he is up at 5:45 am. Silly, silly boy. He must be excited about his "new" ear and going to the birthday party at Build-A-Bear this afternoon.

23 hours before surgery on our way to school. Max is coughing. ALOT. Yikes! No snot though, doesn't sound rattley. I look in the rearview mirror at him. HE IS ASLEEP!!!!!! He never falls asleep on the way to school. This is not looking good.

21 hours before surgery We get to school and I wake Max up. His eyes look purpley underneath, hmmmmm, he looks pale too. We go into the school and Max's teacher see us. She notices that Max does not look well and comments, she also states that he seems "off". Uh yeah, like in getting sick. I cart Max next door to see the surgeon. Thank God it's Wednesday and the surgeon is in today.

20 hours before surgery Max gets his lungs checked, all clear despite the coughing. Max says his ear hurts and tells the doctor "yeah, it hurts". Doctor looks in ear, sees redness and Max's surgery for tomorrow is OFF!!!!!

Yep, it happened again. We went through this the 1st time around, except time wasn't of the essence that time and this time it is. Surgery is scheduled for December 23rd but having had time to think, think, think and discuss this with Max's dad, we're thinking "No". We don't want to make Max go through the surgery and possibly have a miserable Christmas. Just can't do it. So I will call the doctor's office and see if we cannot get it moved to the following week. If not, then as Max's doctor said this morning, "It's all in God's timing, he will get it in God's timing." And it is and will be. Can you hear me?

BI-BI

Remember my "Most Expensive Tube" post? Wellllll, God may have had a very good reason for that tube being a nuisance. Last week I got the hospital bill AND our EOB from insurance. We had met our deductible exactly. I really didn't think to much about it until yesterday morning, on our way to school (again that sporadic thinking which apparently sometimes is a good thing). It hit me. Our deductible for the year IS PAID, WE COULD GET ANOTHER IMPLANT!!!! So when Max had his appointment with his Dr. yesterday (have I mentioned we LOVE him?), I brought up that our deductible was paid and asked if he thought we could get Max a 2nd implant before the end of the year. Max's doctor said, "For him absolutely." I will do it on Christmas day if I have to. So he went out and gave all the instructions to his nurse and we have a surgery date of December 2nd. Whooo Hoooo! I'm thinking maybe, just maybe, we could be activated right before Christmas!!!!! Goodness, what a great Christmas present that would be, being able to hear out of both ears.

While I'm totally psyched at this turn of the most expensive tube, I'm still a little nervous about the whole surgery thing. For some reason, in my mind, which is obviously a little askew, it feels more like a cosmetic thing rather than a necessity. For his first surgery I knew that he had to have it to get sound and therefore gain speech. But this surgery, well, he's got sound, albeit in one ear, so it seems a little greedy to ask for the other one to be done. I do know that the benefits of the surgery far outweigh the trauma of surgery. For one, better localization, ease in noisy situations, better access to sound and a richer sound (that is once the new ear adjusts), and there's always the case if one has a failure, he's still able to have access to sound. A lot of parents have told me that their kids really seem to "take off" when they get the second ear. So I know that it is Max's best interest to get that 2nd ear. He's done so well with the first ear that I can't even begin to imagine how well he will do with the 2nd. I'm sure we'll have lots of exciting posts to add to our blog when we get this thing moving along.

The surgery, well you can bet that I'm going to be all freaked until it is over. I don't think that any mother can hand her child off knowing what is about to come, even if it is all good, without tears. But I will be praying for our 2nd miracle the whole time. Can you HEAR me?

Teaching Fun

I can't begin to tell you the fun I have sometimes when I try to teach Max. Today we are missing school because Em is sick. So lunch is over and Max wants "cookies?" specifically "two cookies." So I try to hand him two chocolate chip cookies. He takes the first chocolate chip cookie but when I try to hand him the second cookie, Nope. He wants "black cookie".
Me: "Oh, you want an Oreo cookie too"
Me: "Oreo"
Max: "No, black"
Me: "yes, it's black but it's an Oreo cookie"
Max: "No, black cookie"
Me: "yes, but it's called an Oreo"
Max: (Holds up chocolate chip cookie) "What's that?"
Me: "Chocolate chip cookie"
Max: "No, brown"
Me: "It's a chocolate chip cookie that is brown yes"
Max (Holds up Oreo) "What's that?"
Me: "Oreo"
Max: "No, black"
Max: (Holding up cookies) "Black cookie.....brown cookie".

At this point he jumps/turns/runs away a la Spiderman.

Does this explain why I tend to ramble? Can you HEAR me?

Sporadic Thinking

This morning I got to thinking, which is pretty scarey considering how sporadic I am. My thoughts bounce all over the place like rubber balls run amok in a concrete room . (I have to say that I'm bad at prayer also as I'll start out good but suddenly find myself thinking of my shopping list, what I need to do, or if I'll have enough yarn for my next project. I used to worry about my ADD prayers but decided that God created me therefore he already knew that I would do this, thus no more guilt, just an "I'm sorry" and effort to get back on track.)

On with my thinking this morning while driving Max to school. I started thinking about Max's IEP meeting coming up, of which I heard about through Max's teacher. I have not heard from our pre-school coordinator regarding this, just that they called his teacher for the meeting and gave some dates but nobody has called me about my dates. Hmmmmmmmmm. This led me to thinking about the progress Max has made in the 17 mos. he's had his implant. How many words he has, what consonants he's making consistently and which ones he's not, what he's doing regarding sentence structure (words, adjectives, verbs, etc.), how he's come really FAR, but we still have such a long, long, way to go. Wow, that state cop car passed by really fast. Wonder what's going on......I bet that's Officer __________. He must have dropped the kids off and got a call. Or maybe he's rushing back home to ____________ (his wife). She probably doesn't go to work until 9 or so......both of their kids are in school........I wonder what it's like to have to have two hearing kids? o.k. if Max was a typical child, I'd probably have a job that I'd be going to everyday. Hmmmmmmm, I wonder if that would be a good thing or bad thing? Em still might not get to participate in a lot of extra-curricular activities cause I might be working and still get home too late to take her. I'd still have all the stuff at home to do like laundry, bills, cleaning, cooking.... I wonder if the money from my job would pay for the daycare that Max would obviously have to go to. Oh, he could go to the christian pre-school, I wonder how much it is to go there?........ Wow, the lake with the sunrise is really pretty. The water looks like a big mirror. I wish it wouldn't rain, I really wanted to go to the zoo this weekend. Em's field trip coming up is to the zoo. Hmmmmmm, maybe I should keep Max out of school that day and take him to the zoo. Ugh, I wonder if I can handle a bunch of second graders AND Max at the zoo. Plus we won't be able to wander and talk about things as well if we're with the field trip. Maybe we could walk around by ourselves? Hmmmm, that will probably hurt Em's feelings if we wander by ourselves. Plus, should I really keep him out of school to go to the zoo? Maybe he'd be better off going to school that day then the zoo. Maybe Trent can take off that day and go with us and I can be with Em and her class and he can walk around the zoo with Max,.... nah that isn't going to work. He HAS TO work, we really need money..... Whoa, there's another state cop. Hmmmmm, that's two today and I haven't seen any for at least a week. Wonder what's going on............we've really met a lot of great people on this CI journey. I have made some great new friends....and look how much I've learned.......... I really want to get Max in the booth and get his maps checked. There are all different kinds of things that can affect the maps, growth spurts (check), surgery (check), been 7 mos since we've had one (check). Hey, there's another state cop, what in the world.........I really need to get Em a warmer jacket before next week. It's really going to get cold next week, I wonder where I can get one fairly cheap but reasonable, I can't go look until tomorrow though, payday is tomorrow. I hope our school system doesn't try to give me grief about Max continuing at the oral/deaf school. I'm sure they won't, he's made A LOT of progress, but what if they think that's enough. No, it's not nearly enough....Hey cool, there's the McCain/Palin bus....I wonder if one of them (or both) of them are on that bus? That's why I've been seeing all the state cops this morning. They're trying to stay a certain distance around the bus for protection - escorting from afar. That's probably why.......Geez, Obama freaks me out.....where did all that money come from for his campaign recently? Especially since we're IN A RECESSION. That's a lot of money....who has that kind of money right now? and why are they giving him so much? That health care thing, that scares me too. What if they do socialize healthcare here? I hate to think of quotas on surgeries and procedures because of money. What if he's elected and they run out of money and won't pay anymore for Max's equipment needs? What if no second CI? No batteries, no mic covers, no coils or other stuff when the warranty runs out? Crap!!!!! What if they decide he's defective therefore the new healthcare system isn't going to take care of him and I don't have the money because the economy is whacked? OMG, what if they decide he isn't even worth it? Nah, they wouldn't do that. I don't know, it's well known that he allowed babies to die and didn't vote to keep them alive, he's also for killing innocent unborn children. Ooooh this is tooo much....Geez, 20 minutes til we get to the school. Uh oh, Max is asleep (weird, he never does this). He didn't eat much yesterday either.

Finally after all of that I turned on my CD player to STOP the sporadic thinking and just focus on nothing but musical notes. Except I need to remember to put more chapstick on Max. Can you HEAR me?

Disclaimer: Do NOT send me comments regarding your political views and why yours are right and mine might be wrong. You will be wasting your time and your energy on someone who doesn't particularly care who you are voting for and why. This is my blog and I am right on this blog. If you want to post your views then do so on your own blog.

MIA

Yeah, we've been missing in action this week. This week has been crazzzzyyyy on the merry-go-round. Our daddy's been gone a lot, Em had a nuerologist appt., I go get my mammies grammied tomorrow (OUCH), Max sees his ENT on Monday, I was reading Val's book. HOWEVER, we hit a new milestone this week. (I really wish I wasn't such a flake and could drive AND get this on video. SMILE) Max has been putting together 5 word sentences. He also had a very loooonnnnnng discussion with me yesterday afternoon (in the car on the way home) about Britney (school friend) falling down outside, but she didn't cry. He has also started arguing with me in the car. Nice huh? But this week, he really has pumped it up a bit. (Which is a good thing cause you know I hate plateau's and start worrying about what I have or haven't done that has caused it.)

Oh, and as for hearing in the car, well I've been a bit amazed at that too this week. In the Spiderman 2 movie the phone rings and the guy says "hello" (don't ask me who, cause I never see it since I'm battling the roadways) but today the phone rang and Max said "hello" before the guy did. AND THEN one of the Ninja Turtles (again movie) burps and Max said "excuse me" (the turtle however does not say this, obviously my son is concerned regarding their lack of manners). Hello? This kinda rocks when you think of all the excess noise in the car; the sound of the road under our tires at 75 mph, possible semi's next to us, occasional window going down and back up so I can get fresh air (this is because I left my window down and it kinda sprinkled rain in the car and now it stinks). I'm just completely blown away by my "deaf" kid. Can you HEAR me?

No, not that......

I think when most of us hearing parents find out that are children have a hearing loss, besides appearing deaf ourselves, "What?", "What did you say?", we also suddenly become stupid, "What's that?, "What does that mean?", "What IS deaf?" I know that I did. I remember trying to breathe in/out and asking specifically, "What does that mean?" "How deaf is deaf?" Of course when they start explaining the audiogram and the results I was basically a bobble-head. I nodded my head in all the appropriate pauses and left still not knowing a thing other than my baby couldn't hear. As time went on, I learned a little bit more. I learned that the first ABR was read wrong (thanks to the audiologist at Riley's for that little snafu) and that Max did not have Moderate to Severe hearing loss but in fact had Severe Hearing Loss. I eventually learned how to read the audiogram and about the speech banana and how my son was never going to get all the sounds on that speech banana with hearing aids. So we moved on to the cochlear implant. But there is ONE thing I DID KNOW and the very thought scared me.

I know that when I found out, a lot of things went through my mind. I could almost picture myself in my brain walking down a long hallway (appropriately labeled "Deaf Hall") with doors lined up on both sides. The doors had little titles on the outside which kind of gave you a clue as to what's inside but didn't. I would open a door go in look around and feel it out. One door would be "Sign". I'd go in, explore in my mind signing and ASL, how our family could learn this, we could have our own secret language, how am I going to do this and drive, eat, wash dishes, ok. we can work this out. The next little door would be "Ridicule". I have to tell you that was a hard, cold room and I didn't like it. I tried like heck not to stay in there to long. But of course, being human and I guess a little sadistic in nature, I'd go in there again and again, like a rubbernecker at a car wreck. Don't want to see but dang, just can't help it and then when I'm done feeling raw, exposed and like crap. There were some other dark and scary doors in there,in my mind. But there was one door that scared me the most and still does. I can't even bring myself to actually put a "sign" on this door, I skirt as far away as possible from this door, but this door is different, it pops up in front of me, out of nowhere and looms begging me to come in and see what I can see. I know better than this, but yet it is there and it is real. I put that door out of my mind but this past week it jumped up in front of me again. I found this blog on "Deaf Village", http://deafness.about.com/b/2008/09/28/more-on-sexual-abuse-at-deaf-schools.htm Obviously, I saw it, read it, and it scared me so far down to my bones that I had to mull it over in my mind before I could blog about it. I think that THIS is one of the things that scares a hearing parent of a deaf child more than anything. I know it does me.

In my BC life (before children) I was a paralegal. I know that even hearing children are susceptible to these monsters that prey on children. I know how devastating it is for the child, the family. One of the reasons that I stopped being a paralegal when I was 8 mos. pregnant with my daughter is there was NO WAY I could work with someone who represented a child moslester/pedaphile. The stakes were too high in that little mental challenge. I didn't do well with it before I was pregnant and well, knowing that I was having a girl, that was it. Besides that I was sick of seeing the same people over and over, divorces gone wild and all the other stuff people do to one another. But a deaf child, this goes way beyond what I can comprehend.

When I found out Max was deaf, I did not know what it meant, what was going to happen, if he would have to go to the residential deaf school in our state, if he could go to our school and all these fears jumped out. The thought of sending my child to a residential school 2 1/2 hours a way at 5 years old literally made me want to break down right then and there. I was already attached to him, how could I possibly send him away to live for the week and only see him on weekends and holidays?????!!!!! I still can't bear that thought, that he might choose to go to the Deaf School at 16 or so. I don't want it and pray constantly that he stays with me. I can't even bear the thought of either of my children leaving for college and cried during the movie "College Road Trip". But the above blog is frigtening and not the first I had heard of this. Apparently it happens quite frequently and there is actually a book about it. I read it, because again I'm sick that way and obviously like to torture myself. I was miserable for months after reading it because I know that it is a very real threat to deaf kids. I also know that the threat just isn't at a residential deaf school, it's everywhere, just more prevalent at residential schools for the deaf.

This is just ONE of the horribly scary thoughts that goes through our minds when we find out our child is deaf. There are a WHOLE LOT OF OTHER scary doors we have to work through, BUT this is just one of the reasons we chose to have Max get an implant.
Can you HEAR me?

Something Different

Because this came up on the CI Circle AND I had actually thought about blogging about this very subject, today's topic is what hubby and I have deemed "The Look".

I forget that Max even wears an implant most of the time (other than putting it on in the morning and taking it off at bed time) until I see "The Look" register across someone's face. I always realize when someone notices Max's implant (he only has one so it may take some time to register). They get this look on their face and I can actually read their thoughts, "oh? I wonder what that is? is it an ipod? hmmm it's flashing? should I ask? will I sound like an idiot? will they be offended?" I can see all of these questions and emotions on their face and I'll usually take that time to tell them about the implant and "miracle" we get every single day.

I've had people ask what he's listening to, point out that his ear is flashing (only to be mortified when I tell them what it is and what it's for), and one lady just could NOT stop staring at it in the movie theatre (that red light does flash brightly in the dark). I'm pretty sure she was hypnotized by that light flashing quickly since she could NOT stop staring and can only imagine her telling her friends and family she couldn't remember what the movie was about maybe something to do with flashing lights? One time we were invited to a friend's church and a woman came up and started talking to my husband and I and she was yakking away (about her 20 yrs of christianity) and then noticed Max's implant and again it was "The Look". You could see her face change as if she had put on a mask, or taken one off, whichever you prefer. She actually told us that we should take Max up to the preacher and have him pray for Max!!!!!! I was so fired up over that I could have slapped her in the name of Jesus myself!!!!! I can pray to God myself thank-you-very-much, and he has answered my prayers, my son can hear and speak. ooohhhhhhhhhh I was hot.

Most kids notice (again the cool lights) and I've noticed that some kids are better than others. Some will ask and once they know it doesn't faze them in the slightest. I have noticed that middle school age kids, 3rd, 4th, 5th, and 6th usually are worse, as they don't ask but point and whisper to one another about it. This caused a meltdown for me at vacation bible school this summer when I took Max and left him, only to think of the older kids and their pointing and whispering which caused me to start crying and freak-out and insist to my husband that I had to go back because I had thrown our son to the wolves. However, Max was fine and actually a 3rd grade boy had be-friended him. Usually Jr. and Sr. High school kids will ask and it doesn't faze them either. Sometimes someone will come up and ask when Max got implanted and they know all about the implant or someone else with an implant and that is kinda cool too. Get to meet people you wouldn't have otherwise talked to.

The best thing about going to the AG Bell Convention this summer was that no one even thinks twice about it. Don't have to explain, don't get "the look". Oh, and there's lots of other kids there with things hanging on their heads and ears.

So yeah, it is "different" for others (obviously not for us anymore though) and it is great opportunity to educate them. You never know, someone you educate may be really glad that they talked to you one day if they face hearing loss or a loved one, young or old is diagnosed. Can you HEAR me?

Singing......la..la..la...la...la...

Ha! Don't tell me a deaf kid can't sing. Here is a video of my son trying to sing to the High School Musical Wii game. It absolutely does not matter that he doesn't know the words, or that he is off key. He is singing!!!! I have to give him a lot of credit. For one thing, he is singing the hardest song on the game (notice the captions in the background) I can't even add the captions to this video because it's a nonsense song. He got a C from the Wii and I honestly can tell you that I probably would not have gotten a better score.

Can you HEAR me?

The MOST Expensive Tube

When Max was 14 mos. old he got tubes in his ears. This is how the whole process with Max's not speaking any words, not turning his head when I called his name got started. It seemed that he could hear, but he just wouldn't talk or turn when I called his name. I remember being scared it was something on the autism spectrum, not full out autism because he was sociable other than not talking and not responding to auditory commands or his name.
So we go to an ENT at a local hospital and he says "Yes, his ears are full of fluid, that is why he is not talking, it's as if he's hearing under water." So at 14 mos. Max gets tubes in his ears. I'm guessing that the surgery for the tubes cost me around $4,000-$5,000. I'd like to give you an actual figure and not a guesstimate, but a lot has happened since this time and honestly my brain cannot possibly keep up with it all. But I'm going to assume this is a fairly good guesstimate.
Of course, the tubes don't seem to be doing the trick, he still doesn't respond and still makes no attempt to say anything. The story from there is like a tricky twisty maze, you go in one direction only to run smack into a dead-in and have to turn around try another and hope you get out of the darn thing FAST, because you're tired, thirsty and it really isn't fun anymore. So I guess I don't have to tell you it wasn't the fluid in his ears since he now has a cochlear implant. You can pretty much guess that it was a full blown hearing loss that somehow happened either after he was born, OR the hospital messed up the newborn screening to begin with.

In the middle of August, Max's first week of school I noticed that he was digging in his left ear ALOT. Everytime I cleaned that left ear I noticed that the wax or the end of the q-tip looked a little bloody. Hmmmmmmmm, ever trying to make things less severe, I assumed that he had possibly gotten a bug bite or something just right in the ear canal and scratched it. After watching him in the observation room one day during school, he really was going after that left ear. Even his teacher looked in there. That night I again cleaned it with a q-tip and sure enough that was blood. So the next day while he was at school, I asked his audiologist if she could possibly go check his ear since he keeps sticking his finger in there. She told me that he definitely had something going on in there and needed to be seen before Monday when his ENT surgeon that put the implant in (Not to be confused with our local ENT idiot) could look at it. Still pretty sure that it was bug bite I called our "papaw/doctor" for a look on Friday. He looked and was pretty shocked to find that Max had a very bad infection in the outer part of the ear, basically in the canal. Max was put on antibiotics and antibiotic ear drops. This was probably at a cost to us of $115.00. He stated that he did want Max's ENT to look at it since it was really bad and with him being an expert and all with the ears. So on Monday I take Max over to his ENT and he exclaims that yes it is really infected but everything we are doing is good so bring him back over in two weeks. That appointment cost me $54.56 (insurance will break them down and pay a small portion). So we take all the meds, ear drops, and papaw looks at it again and says, "Geez, I think it's that tube that is infected. Looks like it might have scar tissue or skin on it." O.k. STOP. Let's do a little rewind here. Tubes were put in, right tube was removed during a good ear cleaning while sedated for an ABR. Left tube fell out whatever they put it in, ear drum, but never fell out of the ear. Now back to The MOST Expensive Tube. He suggests that I take him back to Max's ENT and have him take a lookey-loo. ENT looks and says, "yes, it looks like that is what is going on, still a little inflamed, we're going to have to schedule surgery to remove it." NOOOOOOOOO, this cannot be. I have had medical bills out the wazoo with his cochlear implant surgery, getting to that surgery, my daughter's seizures, EEG's, MRI's, our sawmill went bellyup dead and we filed bankruptcy in April of this year. I have no money, no way to get any money, we are living on the edge, my deductible is $3,000.00, the job Trent's been working at is going belly up as well, he's doing odd jobs which pays odd amounts. NOOOOOOOOOOO. So surgery is scheduled. During that time I pray, I pray hard. I pray for that tube to fall out, go away, disappear. Oh and I get another bill for $54.56. Surgery day: Thursday 9/18. We were supposed to see ENT on Monday but because of the hurricane winds that wiped out S. Indiana and KY, there is no electricity anywhere so no appointment with ENT(savings: $54.56). On Thursday we get to the hospital at 9:30 am. We go through all the rigamaro and with each person I say, I'm still holding out hope that it's fallen out or can be taken out without this surgery. They all look at me like "yeah right." Just as the nurse was bringing the "happy juice" to make Max happy to be going out, I ask if the ENT could just take one more look and make sure that he can't get it out without surgery. ENT comes in, looks, and says I think we can get it. It looks like a little ball of wax blocking it. So surgery is "off". Thank goodness. I'm so happy, I'm sure we'll have to pay something but probably not $3,000.00. ENT gets telescope from operating room and he and Trent and two nurses hold Max while he tries to get the tube, and I cower outside because I don't think I can bear this. After about 5 hours, no not really more like 5 minutes but dang it felt like forever, they come out with, can't get it. It's attached. Oh holy crap. Surgery is back on they give us the "happy juice" for Max. At about 1:00 - 1:30 they come and take Max to his tube removal surgery. I cry when they take him, as usual. I've been through him being sedated or surgery 6 times now, you think I could get over that, but I can't. We wait for him to get out, only 10 - 15 little minutes, it's just a little surgery you know. Max comes out and he is furiously mad, cries, tries to nap for a minute, remembers he was violated and cries some more. ENT says that it was attached to the ear drum still, tissue on it is being sent off to biopsy, hole should close on it's own in ear drum, and gave us antibiotic drops to start putting in on day 5. Max was fine that night, riding his bike like nothing happened. Happy as a lark. I'm happy that it's out, til I get the bill I'm sure. This tube, a little bitty green thing, is the MOST Expensive Tube. Probably around $8,000-$9,000 when it's all said and done. I wish I could have had it. I'd frame it.
Can you HEAR me?