There are a few things I know for certain.
1. I am so blessed to be a mother and a wife.
2. Heavenly Father always has a plan for me, and for my family. Even if it's not my plan.
3. The love one has for their own child is near impossible to comprehend until felt yourself.
4. Enduring well is the greatest struggle of life.
That's about all I know for certain at this point..
It has been another couple months of adventures in the Wright household. It started with the flu from Camden. He woke in the middle of the night throwing up, and continued to throw up every so often until morning. This was my first experience as mom with child who has the flu. Someday I think I'll appreciate when the child can actually aim and knows to try to get to the toilet. Making it into the bowl was a hard concept for Camden.
Exactly a week later Camden woke up in the middle of the night and threw up just once. A couple of weeks later Camden woke up again and threw up ten times over the course of the night. This pattern continued so I called his pediatrician and they asked me to come in. We couldn't see Camden's regular doctor because he wasn't in. I explained that he was vomiting only at night and I couldn't find any food patterns or triggers between episodes of vomiting. The pediatricians that were at the office that day all met together to discuss what route we should take. They called his pediatric GI and sent us to their office. The GI ordered several tests. Stool samples, blood work, allergy tests, ultrasound etc. Camden was negative for any allergies, negative for any bacterial infections, and showed no abnormalities anatomically speaking. Around this same time Camden was complaining about a particular location on his head hurting. Then one night he woke up in the middle of the night just screaming and completely inconsolable. I assumed he was having stomach pains, but nothing at all would calm him down. Which is highly unlike Camden. It took 4 hours and finally a long car ride to get him back to sleep. The next day he was happy as a clam, same as every other time he woke to throw up--always fine during the day.
So I called the on call doctor at his GI and explained that something had changed and he was in severe pain. They scheduled another appt and we discussed theories with the GI. Between that phone call and the appt Camden had a few of his myoclonic episodes, which we have not seen in a long long time. I attended the appt and I told her about the head pain and episodes and she didn't comment much on it. She told me that she thought he had had a bacterial infection that had either run it's course by the time we tested or not shed when I collected the samples. She ordered more samples and explained that many bacterial infections leave a temporary lactose intolerance so she put him on a dairy free diet.
I left less than satisfied and called his regular pediatrician. I explained the head pain and all the extra symptoms and he made an emergency appt for a pediatric neurologist. (So grateful for a doctor who is willing to call me personally, and then personally called the neurologist to tell him to squeeze me in within a week!).
We met Dr. Ross, the only neurologist I have ever semi liked. He flat disagreed with the GI. He said there was no way his vomiting was digestive as it ONLY occurs at night. He said that head pain and vomiting is a good sign of too much pressure on the brain. When you lay down pressure increases and can cause you to vomit. He explained he wanted to do a spinal tap and an MRI. I was not too keen on the idea of a spinal tap as Camden hadn't thrown up again in a while. he still was complaining about his head pain (he complains multiple times a day every day) so I was on board for an MRI.
The Doctor pushed because toddlers have to be put under to perform an MRI and put under for spinal taps. If we did them at the same time he wouldn't have to be put under twice, but again I couldn't justify a spinal tap for just convenience. He told me there was another lesser test we could do to check for pressure--an eye exam.
I agreed to have one the Monday before the MRI (this past monday) and if it showed pressure then we would do the spinal tap at the same time as the MRI.
I was really nervous for the MRI because I knew it would be hard to see Camden get put under, and really hard to walk away from him and not be there for the testing.
We did the eye exam and while it was basically torture for Camden (he's had a lot of that lately..) there was no sign of pressure. So I said no to the spinal tap and we went forward with the MRI.
Thursday morning we arrived at the hospital at 7:15am. Camden was in new pjs and lighting mcqueen slippers and ridiculously excited about having "ma-keen" on his feet.
He had to be fasting and woke early so he wasn't too happy about much else.
They checked us in and explained how it would work.
The MRI would take 2 hours and he would first be put under by gas, then an IV would be put in to keep him asleep.
I carried Camden in to the MRI room and I helped pin him down on the bed as he had the mask on. Camden hates doctors for one, and for two no toddler would just lay there with a mask on their face so he tried his best to fight it. I told him I loved him and I was sorry and his screams got more and more faint until he went limp. His breathing looked really weird and labored to me so I asked if he was breathing okay and they assured me it was normal and told me to kiss him and say goodbye.
I most definitely bawled. It was not a fun thing to watch, and I did not like leaving my baby with strangers. Not to mention I was terrified for the test results too. The nurse explained to us where the cafeteria was and different things but I didn't listen. I just asked how will you get ahold of me if you need me? So she gave me a pager like they do at restaurants when you're waiting to be seated.
I didn't allow that thing to go in any pockets or bags I carried it all day. And I bought Camden a tiger at the gift shop because I felt bad lol.
He took about 1.5 hours and then they told me he was in recovery and they would get me when he began to stir. It took about 30 minutes of torture and then I got to go see him. He had a really hard time coming out of the anesthesia and it was sad but funny at the same time. He sounded like a cow and could NOT get his eyes open.
His first clear request was for "cars". So after I rocked him for a while daddy took him and he ate crackers while watching the movie Cars. We were then discharged and ready to go.
We walked across the street to the neurologist for our immediate results. He saw us right away and pulled up Camden's imaging.
He explained all that was normal then began to point what was not and my heart literally sunk lower than I have ever felt it. I hadn't really fully expected for there to be an abnormality.
Long story short, Camden has a chiari malformation. It's a malfromation of the cerebellum and means that his lower brain basically extends too far down into his neck. It puts pressure on the spinal cord and can cause chronic pain and head aches. It also blocks the proper flow of cerebral spinal fluid as everything is too cramped down there. The doctor showed us where we should see a thick line of fluid and showed us how Camden had a really really thin line meaning the fluid was having a hard time getting through. The pressure causes vomiting and is worse when laying down. The place where it is malformed is the exact point Camden tells me hurts everyday. It is also the exact same point where he loses control during an episode, and the neurologist told me it is definitely possible it is all related.
It requires surgery to fix, which even as I type just makes me cry. Camden's is not considered severe and it is not an emergency must be done right away type of surgery. We have time to consider our options.
This is a very over simplified representation, but simple for you.
It is hard because with a toddler it is impossible to know the extent of their symptoms. This malformation can cause numbness, weakness of muscles, vision problems, etc etc. We do know he has daily pain, as he constantly tells me it hurts and points to the spot on his neck/head.
If left there are risks as well.
If the flow of CBS is blocked proper signaling cannot occur within the brain. The CBS could find another path (the path of least resistance if you will) and he can acquire cysts along his spine that are basically sacks of the fluid but they can damage his spine.
He is also currently high risk for serious head and spine injury if he falls the wrong way.
We still don't yet know if his malformation along with his symptoms are enough to warrant the need for surgery right away. We meet with the surgeon Friday and will be able to ask all of our questions and make more educated decisions.
All we know for certain at the moment is that we don't like the idea of Camden being in chronic pain, and we are scared of the risks of leaving it.
However, we also know some details of the surgery and it is a big big deal. Patients who have the surgery are usually in the ICU for 1-3 days post surgery and then in recovery at the hospital for 3-5 days after that. We know that it is considered a very painful surgery and I don't like the idea of my son's head being opened at all.
We hope that the surgeon will help us make a concrete decision we feel best about.
At the moment we are still kind of just coming off the initial shock wave. Definitely not something I saw anywhere in my future, nor in Camden's. Camden continues to be his goofy, unique self. His stranger danger continues to get worse the more testing he has, but he likely has a lot more imaging coming up after we meet with the surgeon. I also really cannot blame him. The kid is nearly two and he's had way more exams than I have ever hard.
However he is still a really happy boy and that helps a lot. He now knows how to say "BIG BRAIN!" and it makes me smile. We joke that he's just too smart for his own good so his brain doesn't fit in his little skull. He still carries around his tiger that I've taught him to call Chiari. I assume she will be there with us for all upcoming tests and procedures.
We know we will be able to come to a decision we feel at peace with, and we know Camden will be okay, it's just the getting there that will be hard.
The MRI was hard enough for me, surgery on my not-even-two-year-old's brain? I told Garth if I don't go into preterm labor it will only be by some miracle.
Camden after his MRI. He would dance to the piano, and then rest for a bit.
So mostly I write this post not because I want to go on to talk about it with the world daily, not because I want attention, but because the more good vibes and prayers that are sent my son's way the better I feel about us going forward. So I figured getting it out there would be a good way for me to move forward and find my peace for now as well as acquire as much help for Camden as possible.
If you made it this far in reading... good job I'm impressed [:
