I've touched a little on my son, Aaron's medical issues.
Many of which have been ongoing since he was 3 years old.
Please see Blog Post:
Today's Caregiver Salad ingredient is just a taste of what Aaron deals with on the daily; the first of many actual diagnosis'.
Prior to the age of 12 Aaron was sick more than he was healthy. The fact that he struggled with a severe learning delay was the least of my worries.
His physical health was awful and declining fast.
In those years we almost lost him more times than I can count.
I remember standing on the side of the highway using an Ambu bag to keep him breathing until the paramedics showed up. It was early on in the days of cell phones and the dispatcher was having trouble figuring out our exact location. Minutes seemed like hours.
This was just one of many times I would have to perform a medical procedure I had never been trained to do. I had better do it right, too or my kid could die.
The term “Ambu bag” refers to a type of device known as a bag valve mask, which is used to provide respiratory support to patients. The name “Ambu” is an acronym for “artificial manual breathing unit."
We spent weeks upon weeks in the hospital always ending up with the same outcome. The doctors knew there was a severe health issue going on but they had no idea what that health issue might be.
We were accused of drugging him on three seperate occasions.
Each time they ran all the tests and, guess what, no drugs to be found.
I get one time, but three, from the same doctors? Come on, just admit that you're stumped!
They did put him on anti-seizure medications because there was seizure activity, but this could come several hours after he had initially "gone down".
The beginning of an episode looked like this:
His eyes would bead off to the right.
(I have since learned that the medical term for this is nystagmus.)
Nystagmus: An involuntary eye movement which may cause the eye to rapidly move from side to side, up and down, or in a circle, and may slightly blur vision.
His head would loll off to the side and he would begin drooling. One arm would have zero strength. He wouldn't be able to move it at all. Then he would stop breathing. It would be like his brain just shut off.
He would literally go from being fine to being on death's doorstep in moments.
It was petrifying to watch. It also kept me on edge at all times. Just because he wasn't sick at 2:32pm, did not mean he wouldn't be at 2:33pm.
(This was probably the beginning of my ongoing struggle with anxiety.)
I did everything I could think of to try and save my baby.
In addition to talking to any and all medical professionals during his many hospitalizations, I brought him to endless doctor's appointments and I attended seminars from some of the top doctors in the country. I explained what was going on with Aaron again and again.
These doctors did not feel like the seizures were the underlying issue. However, just like the others, they did not know what actually was.
Meanwhile, Aaron was getting sicker and sicker.
After being transported to the same hospital time after time, per insurance regulations, and getting nowhere, I finally struck out on my own.
I made an appointment to see a doctor at the U of M; The University of Minnesota.
The next time Aaron went down I demanded that they transport him to the University.
Going against insurance protocol, I knew there was a good chance we would have to pay out of pocket but I didn't care anymore. I needed to be somewhere that could help my son.
Once Aaron got to the U and they had him stabilized, he was admitted into their critical care unit.
They always had to intubate him because he would no longer breathe on his own, therefore he would stay in the ICU until he started breathing again and the tube could come out.
Intubation, also known as tracheal intubation, is a medical procedure that involves inserting a flexible plastic tube into a patient's trachea through their mouth or nose to keep their airway open. The tube can also be used to deliver drugs or connect to a ventilator to help the patient breathe. Intubation is often performed when a patient is unable to breathe on their own.
A few hours into our stay a female doctor walked into the room, "Dr. Jones".
Dr. Jones told me that the doctor we were scheduled to see had been called away on a family emergency and she was his partner.
She sat down next to me and said the words I had waited over eight years to hear.
"They told me what was happening and I told them what he had."
I was blown away.
Just like that, I was sitting with a doctor who actually knew what was happening to my son.
Then she sat with me for two and a half hours explaining what was happening to Aaron and what they were going to do to fix it.
I was bawling my eyes out by the time she was done.
I could not believe that someone actually knew how to take care of him.
We had been battling this for so long, it just didn't seem real.
Aaron's first official diagnosis' is Hemiplegic Migraine.
Hemiplegic migraine is a rare type of migraine headache that causes weakness on one side of the body, or hemiplegia, along with other migraine symptoms. This weakness, or aura, usually begins during the aura phase of a migraine, right before or during a headache attack. It can last for hours, days, or weeks and may be accompanied by other aura symptoms, such as impairment in vision, speech, or sensation. In some cases, hemiplegic migraine can also cause impaired consciousness, cerebellar ataxia, and intellectual disability.
Dr. Jones also took the time over the course of our stay to examine all of Aaron. She didn't just focus on the episodes. In doing this, she realized that he didn't breathe quite right. The wrong muscles were being used for Aaron to pull in a breath. Instead of his belly extending when he would breathe in, his chest and shoulders would rise and fall dramatically. This was not something any of the others had picked up on.
After a bunch of testing we found out that Aaron's left diaphragm is paralyzed.
The one offshoot of the migraine diagnosis that may have thrown the other doctors off was the fact that Aaron would stop breathing during an attack.
Typically this does not happen during a hemiplegic migraine.
However, because Aaron's left diaphragm is paralyzed, his right diaphragm is the only thing keeping him breathing.
During an episode the right side of his body will become paralyzed; shutting down his only way to breathe.
Aaron is 33 now and he still has an event about every three weeks. After 30 years of dealing with these we have gotten much better at keeping him safe during an episode. [Knock on wood].
Not only have we become unwilling experts on Aaron's fight with this illness, technology and Dr. Jones have given us a steady emergency support plan in order to better our ability to care for him.
Although we no longer doctor with Dr. Jones, I will forever thank her for what she did for Aaron at that time. She saved my baby!
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