Over the last week I have learned a few things.
1) Finding time to study for class makes life a tiny bit easier.
2) There is a dollar jewelry store down the street from me--and lately I have been in need of some retail therapy.
3) It is a wonderful feeling when I know that my son knows who I am, and that only I can comfort him.
4) Smores over the stove, or over the fire pit taste just the same--except I don't get tackled by my 70 lb. golden retriever when I make them over the stove.
5) And NOTHING. And I mean NOTHING is worse than having to stay up all night listening to my little one struggle to breathe.
Let me start from the beginning. For about the last week Kannon has been having a runny nose, sneezing, etc. Then, on Saturday night (or early Sunday morning) Zach and I both woke up to Kannon coughing. For the next 24 hours all the symptoms began to worsen. We ended up taking him to the ER on Sunday night. The wait wasn't all that bad, especially for being at Children's Hospital ER at night. While we were waiting I told Zach that they would probably do a Chest x-ray on him to rule out any fluid in the lungs. I guess all of that schooling paid off, because I actually felt like I was a little ahead of the game, and I didn't feel at all lost. When the Dr. came in he began asking about Kannon's medical history. I told him about the p-ACC (the brain abnormality), the seizures, and the Tetrasomy i(5p) Mosaicism. After I mentioned that last one to him I paused and asked,
"Are you familiar with that?"
"Yeah" he said.
Even though he said yes, a part of me was thinking, whatever dude. You have no idea what I am talking about, and I can tell in your voice. After he was finished asking his questions, he left the room...and it was about 15 minutes later when he returned.
"Umm...Was your son diagnosed with tetrasomy?"
"Who is his Dr.?"
"Dr. Wierenga. He is a geneticist here."
"What did he tell you this meant?"
"Well it is a rare genetic disorder...and..."
Then he cut me off to tell me this.
"Yeah we actually googled it and couldn't find much information on it."
Really people? Am I on punked? Candid Camera? Did you really just tell me earlier you knew what I was talking about then left the room to go google it?....So, already the night isn't going that great. My son is sick, my doctor uses google (which made me wonder how many other doctors do this...not very reassuring is it?), and the night is just beginning.
The first thing the Dr. decided doing was exactly what I had imagined. I had just got through telling Zach that when they do the chest x-ray that they better shield him (with some form of lead to protect him from unnecessary radiation). All radiographers should do it, and most of the time they don't and the only true reason behind it is because THEY ARE BEING LAZY. Anyway, when I took Kannon back, we got him all set up and positioned and you will never guess what they didn't do....shield!!! So me being the "student" asks,
"Aren't you going to shield him?" and this is what the tech (who graduated in like the 1900's) told me
"Oh it doesn't really matter because we aren't giving him that much radiation to really even matter."
OOOOOHHHH....my blood was boiling!! First of all, for anyone out there who thinks a small amount of radiation does no harm, you are VERY wrong. Second of all, a child should always be shielded. Third of all, it is obvious that a person of Kannon's status will more than likely undergo more than just one radiology procedure done in his lifetime. Fourth of all, (I could go on forever on this subject) it is part of our rights that if I ask for him to be shield, then just shut up and do it. Don't give me a lame excuse about it not being enough to matter, when in all actuality it was your laziness that got in the way.
Sorry, my venting is finished.
Kannon cried the whole time they took the x-rays (a chest x ray usually consist of 2 different images). When the first one was over we started positioning him for the second. As we were doing this my eye caught the computer behind the counter, and on it was the results from the first x-ray. From about 10-15 ft away I immediately noticed that he indeed has scoliosis. For a second my heart just sank. Even though a big part of me already suspected it, there was still that tiny ray of hope that we would be told otherwise. I hurt for Kannon. It is hard watching my son constantly being put through diagnosis, after diagnosis, after diagnosis....and it never becomes any easier. Anyways, Dr. Google said that Kannon is just really congested. He also said that there wasn't any fluid in the lungs, and that the Chest x-ray looked okay in that aspect. When I asked about the scoliosis Dr. Google said that it was the first thing he noticed when he saw the Chest x-ray, and that it seemed to be pretty severe. He also mentioned that we needed to take Kannon to see his pediatrician for a follow up on Monday morning. In the back of my mind I could picture him sitting behind his computer googling SCOLIOSIS, then reading about it on www.wrongdiagnosis.com, and how if you suspect that you might have this, then contact your primary care physician. So this, we did.
After another long night of no sleep, and praying that Kannon could make it through the night without going back to the ER....Monday morning had finally arrived. Once the clock hit 8am I called the pediatrician and they fit him in the schedule at 10:45. Once we got there it was pretty obvious to the Dr. that Kannon wasn't just having "normal congestion". Just from reading the report from the night at the ER, Kannon's pediatrician had already decided on her own that the Dr. that helped us that night wasn't exactly the brightest one out there. She especially thought this after I told her the Google story.
I told her about the Chest X-ray, the shielding, the scoliosis, and everything else that I could recall from the night before. She decided on doing another Chest X-ray in her building because for some reason due to Dr. Google she couldn't attain the previous one. Long story short, she said Kannon has severe scoliosis and called me in her office to come look at the image. She also said she will try to get us in the Orthopedic Dr. sooner. She diagnosed Kannon with infectious bronchitis, and prescribed a medication used to treat whooping cough for precautionary reasons. She also wrote a prescription for a breathing machine, so he could have breathing treatments every 4 hours. Then told me that anytime Kannon has a cold, or sinus problem, that she can already tell that he is going to need the help from a breathing machine. Due to his low muscle tone, it is hard for him to cough out the stuff that he needs to, so he will have to be on a nebulizer for who knows how long....So between VapoRub, the Vicks humidifier, the nasal spray, the breathing machine/nebulizer, infant tylenol for the aches and headaches, the whooping cough medicine, and the nasal aspirator/bulb suction---eventually he will feel better and be able to breathe like normal again. Until then, we need your prayers! So far he is doing a little better :) PS He had his eye appointment today, and Dr. said everything thing looks great :) It is always nice when we get to hear some good news!