Because it has been Mitochondrial awareness week and now is invisible illness week, you can guess that my mind has been reliving a lot of what we have been through. Talking with other mom’s at the Mito Madhatter 5k that we just did, plus seeing posts to the Cyclic Vomiting Forums I can see how fortunate we are. It has been making me try to encourage them to not give up. To fight harder. I wish someone would have told me that when we were struggling. There was one person who did. That person saved my son’s life.
It was those thoughts combined with a song I will share with you later that set me off on this blog post today.
I needed to tell other Cyclic Vomiting caregivers or really anyone that suffers from a chronic or invisible illness to keep pushing for answers and to not give up Hope.
Let me tell you why.
My son (we refer to him on here as Chewy) had, had bouts of vomiting that were two weeks apart and lasting for two weeks each. We would take him in and keep being told it was the flu. Then, they started lasting longer. They would be further apart. But, the”episodes” were getting more violent and lasting longer taking quite a toll on his growing body.
We were lost in a healthcare system that wasn’t adequate to deal with something like this. Mainly because they didn’t know what it was. We changed doctors, we went through tests, we tried all kinds of medications. But nothing worked. It literally took me Googling “why won’t my kid stop vomiting” to find an answer. I took my findings to his newest doctor.
This is one reason that I tell you not to give up or stop fighting. You know your kid or even your own body better than anyone. You know what is working or what isn’t. I felt deep down that this could be it. Cyclic Vomiting Syndrome. It made sense to me.. always preceded by a cold or flu, on a cycle of sorts.
The doctors would agree then change their minds. Then agree. They kept running tests. He started on one of his worst cycles yet in September of 2012. It was one of our hardest fights.
It was the hardest for many reasons. We had no direction for care. We were being sent from doctor to doctor with no direction and sometimes with no actual care. We were fighting the school. If he couldn’t be in school, they don’t get paid. There is no incentive for them to help you. Some of the doctors we had were truly awful.
But those weren’t what made it the worst.
This would end up being his longest “episode” yet. Mainly because he got stuck in a coalescence and couldn’t break out of it.
We were spending days at infusion centers for IV’s just to maintain him. Nights in the ER. We could be admitted for different tests but then sent home because they had no idea how to help him.
That is where it gets scary, as a parent. The place that you take your kid that should know how to help your kid.. Doesn’t.
Around the 17th of October when his vomiting pattern changed I amped up my quest to get him help. It usually takes something to pushing you to do it even more. But we were doing it all on our own. No one had answers or a way to help. We spent the next three days going from facility to facility on no sleep. Er, inpatient, infusion. Still nothing but one more test ruled out. But they agreed that it was Cyclic Vomiting. Meds needed at this point required seeing a new set of specialists.
At this point we needed not only the specialist but other specialists.. We had exhausted our Specialist pool. Mainly because people who know about or can treat this condition are hard to find. So we had to get to a place that could help us. That was one more fight.
The beginning of November and Chewy had been without food for more than two months. He was so weak that he laid on the floor in his room unable to get up to make it to the bathroom to throw up.
He would throw up in the little pink bucket you get from the hospital (we have a collection) with silent tears streaming down his face. He would apologize every time he threw up. Which was a lot.
My breaking point was when I came in his room and heard him listening to this:
Broken By Seether
My kid was broken. And no one could or would fix him. I started fighting for him again. I had to. No one else would.
This became my theme song. My stress relief song. My song of hope.
Fix You by Cold Play
I would play it at night sitting on the couch as I made a plan of who to call and push into helping me the next day. I would play it in he car driving home from work and cry. Just cry. Because I needed that more than anything. I was scared that no one could help him. He was SOOO sick. Sleeping 20 hours a day and vomiting the rest. He was becoming unresponsive and confused. I was watching him slip away. But I had to find a way to fix him.
My fight became real.
No one likes to be told what to do.. or how to do it. Especially doctors. I did eventually get them to admit him to the hospital again November 9th. But once there, fought us about what to do.
They wanted to send him home. Because he still was unresponsive to medication that they tried. They wanted to send him home to wait… another two months for a referral to another more qualified place.
We were used to not getting help. We had been struggling with no direction for so long. So when we had a Doctor, who obviously cared, tell us that he was too sick to go home. That she could lose her job for telling us that. But that we had the right to refuse. That simple statement. The right to refuse to sign him out.
Did you know that? I didn’t.
If that facility is unable to help him, they can choose to send him to another facility.
We tried to have him transferred to the one that we were waiting on the referral for. But that one was not approved. Luckily, I not only traveled at that point with his medical records, but with info on specialists from CVSAonline.org. I handed them the paper and told them to send him to one of those. An hour later we were being ambulanced to UCSF Medical Center.
From tests run that night on his organ function, He would not have made it to the referral to the other place. His organ’s were already shutting down.
This condition is already hard enough to deal with. We have learned so much, been through too much. We shouldn’t have to learn lessons like that.
Luckily, we had found a doctor that cared enough to help us. I can not tell you how rare that had been up until that point.
But that was a turning point in our journey. That one Doctor.
UCSF literally took control of our case. They started making calls that I used to have to do. The CARE we have gotten there is unbelievable. They always had plans for what to do or try next. I literally cried on a doctor when he took my son’s medical file, from me to review, and told me that they wouldn’t let him leave until he was healthy. They didn’t. We were there for 19 days.
Now, 3 years later…
We are controlling his CVS. Literally controlling it. It has been more than a year since he has been physically sick. But that doesn’t mean that we don’t struggle with it every day. Because to maintain him, we chart everything. We change meds according to what and how he feels. We don’t leave home with out them.
Our key has been UCSF. They walked us backwards. From coalescence, to being episodic, to controlling the migraines and nausea. We still have to be pushy for getting him meds and stuff like that.. arguing with the insurance company, referrals.. But what works, works. His treatment became aggressive and experimental due to the severity of his case. But hopefully what is now working for him will eventually be working for others.
Be pushy, caregivers. You know you and your kids or dependents. You know what works and what doesn’t. Don’t hesitate to tell your providers. If one provider isn’t working or is not one that is helpful, find a way to get another. It is helpful. It can be done. I may seem overwhelming and at times impossible, but it’s worth it. I promise.
I just wanted to tell you all that. Because it only takes that one person to help you. Do what you think/feel is best. Because it probably is. Maybe sharing a little bit of what we have learned in our journey will help someone else.