Soaking up the Sun before the Storm

We have been trying to avoid talking, thinking or even preparing for what lies ahead this week. I think we’ve done a really good job!

Wednesday we had a family trip to the zoo, it was clear from the start the main goal for Cameron and Connor was a hot pretzel, but we distracted them with the many animals. I think the giraffes were the family favorite, we had to see them from two vantage points (per Cameron request).


As 5pm hit, we headed towards the exit. The boys were racing to the pretzel kiosk it was so funny, Mom and Dad were preparing for a double dip meltdown when the fatal words “sorry we’re closed” would be uttered. I politely asked the man who was clearly closing up shop if he was still open…no can do. And do you know our two boys just took it in stride. We were shocked, as meltdowns over the most mundane of items are cause for tragedy in our house daily. I am writing this moment down so I don’t forget the next time waterworks come pouring down because “Connor took my microwave!”


Friday we headed to Lake Forest Beach with our buddies Charlie & Carter, add in Cameron & Connor, well let’s just say we had a hard time calling out the right name after the right boy. It was a gorgeous day, Cameron took a while to come around, but he did, and proclaimed it another “great day at the beach”. Connor was in heaven from the get go, trucks in the sand, sand piles to climb and water guns, I think he would most definitely echo Cameron’s sentiments but he was too busy having fun!



Not to be outdone was a trip to the Levin Family pool on Saturday, Cameron was ready to roll! It was so great to see him make an adjustment to a new place pretty quickly, and he had a great time in the pool, even jumped in and went underneath the water (with mom’s help). Connor is a fish and was showing off his best fish moves.




Although to be sure he enjoyed the cupcakes the most. Ava was the perfect hostess and showed us all some great cheerleading moves, one of them ending with “let me put some boom in it” hilarious from a 4 year old. And for the first time I saw Connor attempt to hug another child vs. push them, and it was a girl- Score! Must have been the “boom”…
We’re all growing, right ?




And this brings us to Sunday night and the week that lies ahead – can’t bare to think about it, but we must.

Monday: Kidney Ultrasound + Urologist

Tuesday: School starts, definitely on edge about him being under the care of others who won’t know the signs of an episode as well as I do, you can be certain my phone will be attached to me at all times and I’ll be one of those annoying people that “must take this call” just in case it’s school.

Wednesday: We hit the road for Milwaukee to see Dr. Li, the CVS specialist, hope, there is much hope for this meeting

Thursday: Neurosurgery family consult, there is so much riding on this appointment as we try to better understand what the change in ventricles means as we weigh the risks/benefits of brain surgery

Friday: Heart & blood pressure check at the pediatrician to see how Cameron is handling the new medicine

Whew , just writing it all down makes me want to reach for a Xanax.

*One other good thing this week, despite Cameron starting to slip into an episode on Tuesday afternoon, I got the Zofran in him within minutes and 2.5 hours later he was back. It gave me hope, hope we desperately needed.

I feel as though we packed a whole summer in one week, and we loved it!

Yes, we did it, we finally had a normal weekend. Here are the photos to prove it!!
We all had a great weekend and it felt SO good! Friday we hit Navy Pier Children's Museum, Saturday was a Ham Fest with AP and Uncle Mike. Connor loved his corn, and we had a night full of laughs with our boys. Sunday was beach day, as Cameron said "It's a great day at the beach"!

You've got to be kidding me...

It won’t stop, the episodes will not stop. Only 5 days after our discharge from the hospital we heard the moans and rustling from Cameron’s monitor last night at 1:30am. We went to his room and there he was curled up in a ball, neigh neigh (aka stinky headless dog) thrown to the side, his chest rising and falling with so much effort. He moves from one side to another trying to get comfortable with no success.

Zofran is given in hopes of aborting the episode, 12 hours later he was still in the episode, 2 additional doses given. The vomiting is not as frequent, but the pain is there. We have lost Cameron again. He barely speaks to us, only in a whisper, we must place our heads right up to his mouth to hear the one or two words he lets out.
In a stroke of luck we had a scheduled GI appt today for follow up from the recent hospital stay. Off Cameron and I headed at 1:30pm, the entire time constantly checking my rearview mirror to see if he was moving, breathing, was he coming back to me? It was time, we were at the 12 hour mark.

As we walked into clinic at 2:30pm he was coming around, we saw the GI Dr. and Cameron was back, talking in his full voice, playing with the light switches and so on.

The Dr. and I talked at length about the situation, 1 in every 8,000-10,000 children are diagnosed with CVS, he termed it not uncommon. I wonder how many have CVS and Hydrocephalus? God, I’d like to talk to those parents. Dr. says he’s working on finding out who at CMH falls into this category. It’s obvious every child is different and while one drug will work for one, it will fail for another.
Periactin (our current drug) has failed, I think that’s obvious. So we are moving on to Propranolol a non-selective beta blocker. This is used in heart patients who have suffered a heart attack to lower blood pressure, treat tremors, hypertension (high blood pressure), heart rhythm disorders, and other heart or circulatory conditions. It is also used to treat migraines – thus the reason we are using it. CVS is often referred to as an abdominal migraine.

Here’s the hang up with Propranolol for any child, and Cameron of course throws a curve ball into the mix. This drug can cause Bradycardia (a slower than normal heart rate.) This is something we struggled with when Cameron was a preemie, they were called “Bradys” basically his heart rate drops too low and he would stop breathing.

The good news is that now he’s older and while it’s not going to make him stop breathing, it can cause too slow of a heart rate & blood pressure. This would lead to fainting, being very tired and generally weak. Now, we won’t know if Bradycardia will prove to be an issue for Cameron until we try this med, so we started it tonight and Cameron will require regular heart monitoring to be sure he’s doing fine on the drug.

While I know there is a good chance he’ll be fine, I am now freaking out that he’s going to faint somewhere and hit his head.

The other issue with this drug is that another sign of a shunt malfunction is… you guessed it Bradycardia!. This is in effect one of the main vitals they watch every time we are in the hospital. A typical shunt malfunction presents with headache, vomiting, and once bradycardia and hypertension (Cushing’s Reflex) show to be problematic it’s a sign of need for immediate surgery.

So we’re going to give Cameron a medicine that could make him Bradycardiac ? Yes, that’s right. I am not ever sure how I feel about this, but I’ve spoken with the doctors and Neurosurgery was consulted and they are in agreement with this plan. So I just have to go with it for now and hold it hope that he tolerates this medicine and the specialist in Milwaukee will have something to save us all from this misery.
And of course just as we got on the road home Cameron slipped back into the episode. YOU HAVE GOT TO BE KIDDING ME.

So we stopped at the Oasis and gave him Zofran, which he promptly puked right up. I give up.

It’s now 10pm and he is sound asleep and we believe out of the episode.

The Green Bowl

Here it is, the symbol in our lives that it's not going to be a good day.


It once was used to make a big fruit salad for Cameron's 3rd Birthday.



Today it means we are in a CVS Episode. It hides in the hall closet, instead of the kitchen cupboard where it really belongs.

This pale green, big plastic tupperware bowl has taken many rides to Children's, it's sat on our couch, in our beds more times than we care to count. I hate this bowl and everything it stands for.
(I won't get into the nitty gritty of "how" it's used, but let's just say it's shape and size do the job better than anything else as Cameron is always too weak to get out of bed.)

Cameron has had two more episodes since our last post, both of which landed us in the hospital for overnight stays. The episodes are getting worse, longer and altogether very ugly.

I have spent the last two days on the phone with various nurses, doctors, medical departments and so forth to get clinic appointments scheduled with both GI and Neurosurgery.

There are many questions, no real answers. Brain surgery to consider and so on. We are secured for GI on Thursday. In some good news after sending in all our records, history and episode logs we got in with the CVS specialist in Milwaukee for 9/1.

Naturally the day of Cameron's Open House for his new "typical preschool" - you can bet I chose the Dr. appt. The story of his life...

Appearances

And herein lies part two of letting your guard down, and that part is about Cameron. We recently got to a point where we did let our guard down regarding Cameron’s medical conditions. You never stop worrying, but I really felt as though we had finally hit our stride, he was healthy, he looked good, he loves school – what more could we ask for from our medical mystery boy?

If you saw Cameron on the street, even today with our new diagnosis of CVS, you might take a second glance only because he had his orthotics on, or without a shirt on could see his shunt tube going down his chest, but you’d never think this was a child with a host of medical conditions, some life-threatening, with no cure.

And it’s because he looks so good that I think sometimes people forget how sick he was, and quite frankly still is if you catch us on a certain day.

We let our guard down because of his outward appearance. Meanwhile inside parts of his anatomy are walking a thin tight rope where a fall could happen at any moment.
We took a fall last Thursday when he slipped into another CVS episode, unfortunately this one was different. He normally comes out after 12 hours, by hour 24 I wasn’t sure what was going on, so we made the call to GI. And off to Children’s we went, I even tried to convince them that he wasn’t dehydrated, they still wanted him in the ER.

Every time Cameron does so much as sneeze, cough or roll over in bed, we stop gripped by fear. Is he going to vomit? Once that happens I am done, I can’t properly explain the feeling but your whole body tenses up, your teeth are clenched and you don’t even realize it, it’s as if you are in a straight jacket of worry, playing out all the ‘What Ifs’

The reality is I can never let my guard down, ever. In fact I need to be more vigilant. I have to journal his daily activities, watch for signs of an episode or shunt malfunction, pause before telling him about any potentially “exciting” plans, try to figure out triggers, and then avoid them. I have to question if he can stay in camp this summer because it's been suggested too much fun could send him into an episode. Really?

I have to question every potential symptom this boy exhibits and consider a call to one of our many doctors, which could set us on another course to Children’s.

During our most recent stay there were SO many frustrations, but most troubling of all was the concern for the ventricles in his brain. They are small, not too small, yet. His neurosurgeon says he’s at increased risk for Slit Ventricle Syndrome especially based on the placement of his catheter. After the MRI of his ventricles on Thursday confirmed her suspicions I now know what she meant when she told me having “small ventricles is neither a good or bad thing, it just is”.

While on some level I was prepared for the day we’d be faced with a shunt malfunction, it never occurred to me that we could be dealt a NEW diagnosis, really how would that be possible? He already has enough going on, his medical record file at Children’s is the size of Webster’s Dictionary, no joke, I’ve seen it. For now we add Cyclic Vomiting Syndrome, and I sincerely pray and hope Slit Ventricle Syndrome is not in our future.

Isn’t there a quota, a cap, something that says it’s too much?

We let our guard down, because he looked so good. Today he looks good, he is happy, he is a lucky boy. Yesterday he was sick, very sick. Who knows what tomorrow holds. What’s that old saying…? “Appearances can be deceiving”