Next Steps

Last week, we had our consultation appointments in Green Bay. A quick drive up to Prevea and we are back into doctor offices, answering questions, reviewing medical history, height, weight and paperwork. Remember, these are the follow up appointments from our last CF appointment that we need to have a consultation with the ENT and another surgeon to have essentially a tune for Maddox. Dr Pete looked into his little mouth and said, yup those need to go.

So, here we are. Nick and Maddox had a chance to have a pep talk on the meeting for the first surgeon and when Dr Johnson walked in Maddox stated, ‘he’s my friend, we’re best friends’. Seriously kid!? 🙂 Friends with everyone and of course Dr Johnson gave high fives. This consultation was super quick; a quick evaluation, a few questions asked, understanding the recovery and we were in and out. Dr Johnson was a super cool guy and put my mind to ease of his side of the procedure. He stated that he knew that we were going to Dr Hunt next and stated that his own kids had their tonsils and adenoids out and it was a good experience for what it is. We shake hands with our new best friend and go up two floors to our next consultation.

Next we head up to the ENT office, Dr Hunt is running 20 minutes behind. Crap. A 3 year old that already has issues of sitting still and not always liking doctor offices. Thankfully the appointment was closing in on the noon hour and we were one of the few patients in the waiting room so he was legit running around and climbing on the super high chairs in the waiting room. We are called back and so starts the next adventure of today’s episode. We are escorted to a room and it honestly looks like a procedure room, a huge chair with all kinds of scary looking attachments (I even had weird vibes) and Maddox got scared that he didn’t want to sit in the chair – can’t blame the kid at all. Then enters Dr Hunt – with a huge head lamp on. Not what I was expecting – mom reflexes kicked in. ‘Maddox look, Dr Hunt has a light to help grill, just like Daddy does’. Maddox then calmed down and was able to relax just a bit. Whew.

We sat and chatted with Dr Hunt for a bit and then it was time for the evaluation. Maddox and I climb into this big scary chair. He does great to have Dr see in his mouth and attempt to look up his nose. Poor kid has legit had a stuffed up nose for as long as I could remember (even on medication for it). Next came the ears… and the meltdown. He has had so many different people poking and proding in his ears that he completely shut down. Now matter what doc stated, showed Maddox and I the tools, checked my ears (no infections for mom), and showed the little light, didn’t matter as the Doc couldn’t see anything. Not good.

After the screaming calmed down, we had a lengthy conversation about next steps. Maddox was done and wanted to go home at this point. Dr Hunt stopped our conversation and asked if Maddox asking ‘huh’ was normal all the time and if he was sick at all. We replied that he is starting to show signs of being sick again or at the end of being sick but he does say ‘huh’ a lot. Hunt then asked if we had a concern with his hearing. My response back was that I don’t know if it’s selective or a real concern because if we don’t repeat ourselves, he knows what we say most of the time because he picks up the conversation again. Well, it was enough to trip a concern and the order for an audio gram was sent down the hall. Thankfully, it was the noon hour as the audiologist didn’t have anyone else and we were escorted to the testing room.

The audiologist was a cute little older lady that looks like she has been doing this a really long time. She has us sit in the sound proof room and Maddox already hates and kept telling me that he just wanted to go home (me 2). So, I take the few minutes to hit pause on everything and have a talk between him and I (seriously no distractions – its a sound proof room). I tell him that we can’t go home until he does this, he’s a brave little guy and help him regroup. Then the little voice comes over the speaker. There are two buckets; the full bucket of foam blocks that Maddox has and an empty bucket that I have. Every time he hears the birdie to put the blocks in the bucket. Holy crap, this was the most intense test that I have ever been apart of (worse than my MBA tests). It was one of those that you can’t do anything to trigger him when you, yourself hear the birdie and silently pray that he can hear it. Thankfully, he was able to hear the birdie for the most part, but he quit half way through the test. Like I said, I could tell that she has been doing this a long time as she had tricks up her sleeve. Once the birdie idea had flown, she came in with little ear plugs attached to the microphone and had a big picture board of different images. She went back and covered her mouth and told Maddox to point to the objects. It’s very interesting from my observations; he doesn’t know what a cowboy is and the images on the board were there very specifically as different pitches and hertz are said when the words are said out loud. Listen to Ice cream, cowboy and horse and the different levels.

So we get through the hearing test in the box. I think we’re done with the audio gram – we were not done with the audio gram. Next she has us set at a table with a computer monitor. She puts in more ear plugs for him and all we had to do was watch the screen. We’re watching and nothing happened/changed on the graph. I have no idea if that’s good or bad but the test was completed and we walk back to Daddy and the Dr in the room. As we are walking past all the nurses are saying hi, and stating “this is the cute little guy we heard about” of course Maddox turns on the charm and smiles back to all the ladies. The drawer opens of a ton of stickers and he picks out a few. We are back in the room and again, Maddox is done.

Dr Hunt walks back in, “Ok – we need to talk about Maddox’s Results” in the perfect Dr tone where I felt the blood drain from my face; now what is wrong with my baby. Dr Hunt didn’t think the test results were accurate as it was conflicting information. The 2nd test that we had was a pressure test, it would push and pull pressure in his ear canal and normally there is a curve or a box on the chart. Remember when I said nothing happened on the chart, that wasn’t a good thing. The doc said that there is no vibration in his ear drum and was surprised that he could hear anything. His only thought was that there is so much fluid in front and behind his ear drums that he is not hearing to his full potential and because Maddox won’t let him see what is going on it’s all speculation. Yikes. Ok, what next?

His medical recommendation; tonsils (even though they didn’t look that bad at the consult), adenoids to help with the sleeping, then he was going to do a nasal clean out and then an ear clean out. Depending on what he finds and how bad it is, Ear tubes/vents.

The total surgery is scheduled for about 2 hours for everything, which for how much he is having done, is pretty quick. We are scheduled for one of the earlier appointments of the day. I have all hope and intentions to go home that night but we have been warned to plan to stay as Dr Hunt is afraid of his oxygen levels. As everything swells up and they want to make sure he is breathing ok. And so starts the prep for the big day.

In the next blog post to come, the prep for surgery and post op for Mom and Maddox as it sounds like little man is going to be down for the count for at least a week with everything. My little baby, #myhero.

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