Yes, I've said it many times in the last two weeks and really there is no better way to describe our reality lately.
Because I am exhausted, don't sleep much anymore and generally miserable at times this post may be very debbie downer.
We broke our hospital free streak Thanksgiving night, we at least got to eat dinner before whisking Cameron off to our "summer home" (aka Children's). It all started out of nowhere when Cameron began throwing up and within an hour he had thrown up 10 times! Calls were made to our pediatrician who sent us to get him imaged given Neurosurgery orders. A constant reminder of life with Hydrocephalus and its struggles
The nasty green bowl was unearthed from the depths of a closet, Cameron's face so pale it didn't take long for us to remember the days of summer when this was a weekly occurrence. Here it was a Holiday and I had stopped his meds about two weeks ago, all the stars were aligning in all the wrong ways.
We quickly packed up the car, I naively had high hopes for an a quick MRI and a return trip home. Yes, despite our history I still have hope.
In the time I pulled out of the driveway to getting on the highway (1 mile) Cameron had thrown up 4 more times.
Naturally MRI was not an option, being a holiday and all, so CT Scan was ordered (which means more exposure to radiation and not being able to compare images in the same modality). Long story short there were no signs of shunt malfunction on imaging and his ventricles were stable in size.
I jumped on the CVS Train I had so happily departed in October, after being a month free of episodes. The doctors cautioned me to not make the leap, there was still much more to rule out.
Easy for everyone else to say. I took him off his meds two weeks prior to a holiday - who does that? I was so sure we were out of the CVS spell, I caused this whole mess. I felt terrible.
After getting bloodwork, IV , and Zofran Cameron seemed a little better, but we would not be avoiding admission as I had hoped, we needed to rule out other issues.
Thursday night into Friday was a nightmare - Cameron had a catheter to check for a UTI or Kidney infection, a Shunt Tap (where they stick the lovely needed in his head) and then he spiked a fever and threw up over all of us. Around 2am the Resident shared his White Blood Cell count was high at 20,000. So we knew there was some sort of infection but we had to find the source, he was convinced the urine would come back positive. It did not. The initial gram stain on the CSF (shunt tap) was negative – all good things, but sometimes you’d really like to find the source so that we can get Cameron medicine and back on track. But I’ve learned nothing is ever text book or easy with Cameron.
Ultimately we never found the source. We were inpatient Thursday - Saturday and never found the cause. The following Tuesday all final cultures were in and nothing had grown in the CSF. Relief.
The only good to come out of the fever and high WBC; we all feel confident this was not a CVS episode. Relief again.
In the midst of this mayhem comes the WTF. In broad daylight on Friday our house was robbed. Maybe you are saying “WTF” out loud right now too? TVs, Computer, Cameras, all the jewelry my mother has given me over the years GONE.
(Back story)…
Friday around 4pm we were moved to isolation (given concern of infection) Matt received a call from the neighbor checking on Miller. I didn’t need to be on the phone to know within seconds there was a problem, and when my fears were confirmed I went screaming and crying down the halls of 3 West falling into the arms of the charge nurse, thank you Erin for holding me.
Really how much can one family take?
2010, I despise you and all you brought us. There will be no Christmas cards this year, there are no photos – all gone with my computer (as is all of Cameron’s history, medical logs, insurance logs etc.)
Really, I’m going to be a complete scrooge and say 2010 was not a blessed year for us. We’ve been let down, beat down and are now run down to the very core.
I have no energy left to do anything more beyond making Christmas special for our two little boys.
To those who surrounded our family with love and support thank you, we would not have made it without you. The meals, the cards, the coffees, the love to make us not feel alone, we are blessed by some pretty amazing people. You know who you are, and together we will make 2011 worth celebrating.
Sunday, December 12, 2010
Tuesday, November 09, 2010
Chance
What are the chances you will have a child?
What are the chances you will have a healthy child?
When I was young I never thought about these questions much, I just assumed I would have a child one day and it never even crossed my mind that “health” of said child would ever be a factor.
Growing up you’re not aware of what lies around the corner; the joys, the sorrows, the pain, the successes and the failures. Life is an open book when you are young, it’s full of dreams, with very little fear.
After learning having a child would prove to be difficult for us, I was sad, disappointed, even mad. Then one day by chance we learned we were pregnant. Never during those 27 weeks prior to May 3, 2006 did I ever think I would have a child who would be sick before he even entered this world. By chance on May 5th we learned of the many challenges Cameron, and us, would face as a new family.
And 2 years later Connor joined us by chance, not planned.
I bring all of this up because I truly believe the path we are on is by chance, it could have just as easily been you instead of me. I have grown, changed and learned so much on this path. And I have cried many tears and felt the weight of the world on my shoulders for really too long, but I will keep going because my children need me, and I need them. We are better people having Cameron and Connor in our lives.
One hot day this summer we saw two specialists at the Rehabilitation Institute of Chicago, as I looked around the waiting room I thought how all of us are here by chance and how so many other families were outside enjoying a beautiful sunny day in Chicago, at the beach, the pool, maybe getting an ice cream cone.
And there, in the waiting room I counted at least 15 different children under the age of 10, each one with orthotics on their feet, 75% of them in a wheelchair, all of us waiting at least an hour to see the same two doctors. And my little boy was squealing in delight playing with another little boy in a toy school bus.
Later he tires of waiting and asks when they will call our name. But he’s not upset that he’s stuck inside, he’s just tired of waiting.
Was I upset? No. I was counting my lucky stars that my child could walk, he could talk, and he was happy.
Cameron’s struggles are not over, he will fight the rest of his life. One thing not by chance; our will to give both our children the best chance to succeed in life.
What are the chances you will have a healthy child?
When I was young I never thought about these questions much, I just assumed I would have a child one day and it never even crossed my mind that “health” of said child would ever be a factor.
Growing up you’re not aware of what lies around the corner; the joys, the sorrows, the pain, the successes and the failures. Life is an open book when you are young, it’s full of dreams, with very little fear.
After learning having a child would prove to be difficult for us, I was sad, disappointed, even mad. Then one day by chance we learned we were pregnant. Never during those 27 weeks prior to May 3, 2006 did I ever think I would have a child who would be sick before he even entered this world. By chance on May 5th we learned of the many challenges Cameron, and us, would face as a new family.
And 2 years later Connor joined us by chance, not planned.
I bring all of this up because I truly believe the path we are on is by chance, it could have just as easily been you instead of me. I have grown, changed and learned so much on this path. And I have cried many tears and felt the weight of the world on my shoulders for really too long, but I will keep going because my children need me, and I need them. We are better people having Cameron and Connor in our lives.
One hot day this summer we saw two specialists at the Rehabilitation Institute of Chicago, as I looked around the waiting room I thought how all of us are here by chance and how so many other families were outside enjoying a beautiful sunny day in Chicago, at the beach, the pool, maybe getting an ice cream cone.
And there, in the waiting room I counted at least 15 different children under the age of 10, each one with orthotics on their feet, 75% of them in a wheelchair, all of us waiting at least an hour to see the same two doctors. And my little boy was squealing in delight playing with another little boy in a toy school bus.
Later he tires of waiting and asks when they will call our name. But he’s not upset that he’s stuck inside, he’s just tired of waiting.
Was I upset? No. I was counting my lucky stars that my child could walk, he could talk, and he was happy.
Cameron’s struggles are not over, he will fight the rest of his life. One thing not by chance; our will to give both our children the best chance to succeed in life.
Monday, November 01, 2010
“They took our Halloween Treats!!”
Just one of the many quotable moments from Connor this Halloween! The Dominick boys thoroughly enjoyed Halloween 2010, with the highlight being handing out the candy, once of course Connor realized how the whole trick or treating concept worked.
Once Connor was talked down off the ledge he was the first one to scream “here come more trick or treaters!” and race down the steps with handfuls of candy to pass out.
As we hit the streetsfor some trick or treating of our own both boys embraced thechance to take other people’s candy! Connor could have gone for miles, but our boy Cameron tired out after about 30 minutes, which was good for him.
 |
| Give me back my Halloween Treats!!! |
Once Connor was talked down off the ledge he was the first one to scream “here come more trick or treaters!” and race down the steps with handfuls of candy to pass out.
As we hit the streetsfor some trick or treating of our own both boys embraced thechance to take other people’s candy! Connor could have gone for miles, but our boy Cameron tired out after about 30 minutes, which was good for him.
And this was the first official “Holiday” since May that did not result in a hospital stay. Yippee! We are so happy to be back on track, here’s hoping for more hospital free holidays ahead.
Tuesday, October 12, 2010
Mile One of 6 Complete!
We are so grateful for this change. It's only been 30 days but it's huge in what have been some of the most troubling 5 months of our lives.
We sleep a little easier, we exhale, we laugh, we make plans and we celebrate every good moment we get.
So far…
Yes, this is all with some hesitation, as Cameron's neurosurgeon is not yet ready to claim victory over CVS, and call "IT" (aka the last 5 months of hell) all due to the shunt and slit ventricles.
Dr. Bowman wants 6-9 months out before really taking a deep breath and never uttering CVS again, unless of course you are talking about your neighborhood drug store. Once we get to 6 months we’ll consider stopping his daily medicine.
So this is only Mile One. But every mile counts.
Last week Cameron had an MRI and his ventricles remain stable from 9/10, which is good. Sometimes I forget as he grows older and is more aware of his surroundings; he might become fearful of these tests. The MRI tech was so kind and made sure he felt comfortable. If you've never had an MRI it's not for the faint of heart, the "tunnel" you enter is what I’d imagine being stuck in a coffin might be like, sorry I can’t come up with a better analogy, I don’t mean to be grim. The tech ceremoniously hands me two sets of little Styrofoam like green ear plugs and as if we are suiting up for space Cameron and I clog up our ears. I always hope he can at least hear me say “I’m right here” but if he can’t he can always see me and feels me touching his legs as they slide him into the spaceship.
After the MRI we saw Dr. Bowman, and she adjusted his shunt up to 2.5, just a slight move from 2.0, all in an attempt to keep his ventricles “full” instead of potentially slipping back into the very very tiny area.
This is all a guessing game trying to figure out if the ventricles had anything to do with the vomiting episodes. Ironic; hydrocephalus is defined has extra fluid on the brain (larger than normal ventricles) and while Cameron once fit this mold perfectly, now we want them to remain large? I swear this science of the brain stuff is something I don’t think anyone truly understands.
So now we wait, any signs of shunt malfunction or CVS episode will send us to Children’s for imagining to see how the ventricles look. But for now we are happy, and at home….a few bumps in the road upon return to school after surgery, our daily struggles with therapy and home frustrations, but that's a story for another day.
Monday, September 20, 2010
Hydrocephalus and Shunts - How do they work?
Although Cameron has had a shunt for 4 years, we’ve never really taken the time to truly explain how it works. In light of the last two weeks, I thought this post would be helpful for those who really want to understand what the heck is going on in Cameron’s brain. The picture above of the brain illustrates the ventricular system. The flow of fluid is essentially from top to bottom. In Cameron’s case prior to his birth, the Lateral ventricles were increased in size from typical ventricles. This buildup in pressure is called Hydrocephalus.
After his birth at 32 weeks, an Endoscopic Third Ventriculostomy was done, this was in an effort to avoid the shunt (a man made device). 2 months post ETV Cameron’s Ventricles were continuing to increase in size, so he went in for another surgery to have the shunt placed, this worked to keep his ventricles at an acceptable size.
The problem with a shunt is it's a man made device and can malfunction. Some children have many, many revisions. We have been lucky to only be on our 2nd revision. When the shunt isn't working, many things can happen:
1) The pressure builds, enlarging his ventricles and pushing his brain against his skull.
2) Slit Ventricles – where the ventricles decrease in size significantly, that they become slit like and there is not enough fluid in the ventricles (what it looked like on our MRI prior to surgery 9/2/10
3)The tubing for the shunt can snap, or the child can grow that the tubing is too short
All of these things can lead to a shunt malfunction causes irritability and vomiting among other things.
This picture shows how a shunt is placed to go into the ventricle and allow fluid to drain out the top, down a tube which is placed just under the skin and drain into the belly. The pink device on the top of the shunt is a valve to allow fluid to drain, but not allow fluid into the brain. The green stick like thing going into the brain is called the Catheter. In Cameron’s case, during his recent surgery they placed a new Catheter and moved the Valve around a bit. The shunt still connects to the same tube his old shunt used to then drain down into his belly.
One week post op when Cameron presented with lethargy and high fever, a shunt infection was suspected. The highest risk for infection is in the 6 months following a revision. If there is an infection they have to take out the entire shunt, and the patient is on an external drain for 7- 10days. I hope we never experience this.
The MRI on 9/10 showed his lateral ventricles has increased in size remarkably from the scan done prior to surgery, so all the alarm bells went off for the nurses, radiologists, residents and so forth telling us he would need another revision. But as we know his Nuerosurgeon liked the size of the ventricles compared to the pre surgery MRI where they almost seemed to no longer exist.
If after only one week there was such a dramatic change it certainly makes one wonder what they look like now, we’ll find out 10/5 when we go for another MRI.
We have been CVS episode free since the surgery, so there is hope that this shunt revision was the fix we needed. For now he continues on the Propranonol. Only time will tell…
I hope this helps better explain how shunts work.
Saturday, September 11, 2010
Top Ten lessons from 9/10
1. Only your Childs primary neurosurgeon will make the call on surgery, no matter how many professionals will tell you in a 12 hour time period he will need surgery tonight.
2. There is power in numbers. I believe The many people who have prayed for our family in the last 24 hours have brought Cameron to a place where surgery was not a sure thing.
3. The Eric & Kathy Radiothon to support Children's Memorial Hospital going on in the lobby of this hospital is not for the faint of heart and is a reminder for all to hug your healthy children. On a side note 3 out of the last 4 years Cameron ends up inpatient during this radiothon, while its for a great cause I'd prefer to support from home!
4. Speaking of home, in our return to 3west and the 6 bed icu area we have seen two families that have not left since we were here just a week ago. Count your blessings
5. I love the nurses on 3 west, Kim our favorite from last week got me one of the brand new "parent" chairs, there are only 24 in the whole hospital. I was so excited about trying this bad boy out in hopes of actual sleep.
4. Sorry, but the new " parent" chair gets a bad review from this parent. I'll take the 20 year old version next round..
3. We have some pretty amazing friends who continue to show up for us no matter how many times they get the call. Thank you morels, renkes, Julie, ap & mike, kunish fam.
2. I don't have any more lessons, too tired, but 8 lessons from 9/ 10 didn't work as a title.
1. The latest update: Cameron did not have surgery and will not be having it anytime soon. The high fever has not returned since last night, preliminary results are no infection or psuedocyst, hooray! Only a few heart rate drops over night Today we wait for final cultures and hope that Cameron wakes up ready to roll into the life center. Dr. Bowman is actually happy with the increased size of his ventricles " we just need to be sure Cameron is happy with them" she said. It is possible we could take this roller coaster ride again at any moment, that's life with hydrocephalus but for now we concentrate on getting home today...
**post update 1:30pm Saturday 9/11/10 - WE ARE HOME! And my dear husband just informed me that my post repeats numbers and actually only adds up to 9! Well this is what happens when you don't sleep for the last 24 hours much less the last 5 months...pretty telling if you ask me, I got a good laugh when he told me.
2. There is power in numbers. I believe The many people who have prayed for our family in the last 24 hours have brought Cameron to a place where surgery was not a sure thing.
3. The Eric & Kathy Radiothon to support Children's Memorial Hospital going on in the lobby of this hospital is not for the faint of heart and is a reminder for all to hug your healthy children. On a side note 3 out of the last 4 years Cameron ends up inpatient during this radiothon, while its for a great cause I'd prefer to support from home!
4. Speaking of home, in our return to 3west and the 6 bed icu area we have seen two families that have not left since we were here just a week ago. Count your blessings
5. I love the nurses on 3 west, Kim our favorite from last week got me one of the brand new "parent" chairs, there are only 24 in the whole hospital. I was so excited about trying this bad boy out in hopes of actual sleep.
4. Sorry, but the new " parent" chair gets a bad review from this parent. I'll take the 20 year old version next round..
3. We have some pretty amazing friends who continue to show up for us no matter how many times they get the call. Thank you morels, renkes, Julie, ap & mike, kunish fam.
2. I don't have any more lessons, too tired, but 8 lessons from 9/ 10 didn't work as a title.
1. The latest update: Cameron did not have surgery and will not be having it anytime soon. The high fever has not returned since last night, preliminary results are no infection or psuedocyst, hooray! Only a few heart rate drops over night Today we wait for final cultures and hope that Cameron wakes up ready to roll into the life center. Dr. Bowman is actually happy with the increased size of his ventricles " we just need to be sure Cameron is happy with them" she said. It is possible we could take this roller coaster ride again at any moment, that's life with hydrocephalus but for now we concentrate on getting home today...
**post update 1:30pm Saturday 9/11/10 - WE ARE HOME! And my dear husband just informed me that my post repeats numbers and actually only adds up to 9! Well this is what happens when you don't sleep for the last 24 hours much less the last 5 months...pretty telling if you ask me, I got a good laugh when he told me.
Friday, September 10, 2010
Back in the hospital
Just a quick note cameron is back in the hospital for what appears to be shunt malfunction. Preliminary results show no infection, but ventricles are increased in size so we are waiting on final word on surgery. He has a high fever and is really out of it. Once dr bowman gets out surgery we will have a game plan.
Tuesday, September 07, 2010
24 Hours and 24 Stitches Later
The Sweet Heart Bandage they used...
Ok, kids are amazing, and Cameron is nothing short of a miracle. Just over 24 hours after we rushed Cameron into the hospital he was walking out the next day.
He ordered up his favorite meal for dinner, you can see how tasty it looks! The funny part is he seldom takes more than one bite of that burger, and ketchup is a must, an absolute must for the fries.
As usual he was the first one at the door to the Life Center when it opened up at 9am. The Life Center is amazing, it's packed with games, toys, and it's full of sunlight, which is so important.
I couldn't wait to get Cameron home to try and wash out some of his hair, not only did it smell of surgery to me, it looked as if a bottle of Dippity Do, or whatever that gel is called, was used on his long locks.
And it's a good thing for those long locks, as part of his head did need to be shaved, but with a little comb over action we are able to successfully cover up the incision. (it's a nasty one as you can see her, for those who are squeamish my apologies!)
Prior to discharge we met with his nuerosurgeon and talked about precautions, of which there are many. We are due back in two weeks for an MRI and post-op check. Should anything, and I mean anything resemble a CVS episode or shunt malfunction happen we are to bring him immediately to the ER. Given that they have gone "in" Cameron is now at increased risk for malfunction and/or infection for the next 3-6 months. So we'll be sticking close to home for the remainder of 2010! I then hope to close this chapter of our lives!
We got home just in time to Celebrate Grandpa George's Birthday! Cameron sang Happy Birthday to him at least 20 times! while Connor did partake in the signing I think he was even more pleased with the cupcakes...
Cameron went back to school today, which I think is good for all. Having missed all of last week, but for the first day it's time. I feel confident the school is well versed on everything, we've met and reviewed protocols, they provided very detailed instructions and infromation which Dr. Bowman signed off on so I felt ok leaving him today. Not 5 minutes had past and I already got a call from the school nurse, concerned about some redness near the shunt track. Connor and I went back into the school and it was all fine, just some post-op under the skin redness he had that I forgot to point out to them. But A+++ to them for calling me right away.
So now we wait, I am trying to take it one day at time. If we can get 7 days post last episode I will feel good, 14 which would be Friday the 17th I will feel even better that the 5 month nightmare is over. I know only time will tell, but we have hope. (oh and a lot of fear too, but that's for another day!)
Thursday, September 02, 2010
Surgery update
Well we knew this week was going to be rough but it took a turn we didn't necessarily expect so soon. Which is probably for the best as it was over before we had time to even think about it!
During our trip to see the cvs specialist in Milwaukee yesterday Cameron slipped into another episode, less than a week since the last one. The meeting with dr. Li was very informative (more on that another day). We got back home and by 6pm Cameron seemed to be out of the episode. Only to slip back in a later that night. I slept next to him and it was clear we were back in the woods, little sleep was had.
Morning came and I headed off alone for the consult with dr bowman, neurosurgery, as Cameron was puking at home so dad stayed behind.
About 20min into the conversation it was decided he needed surgery today. Dr bowman noted his ventricles were almost non existent on film and the right side appeared collapsed. Given the frequency of vomiting episodes has been getting worse she came right out and said she was not comfortable with his situation. While he can live with CVS, he can not live with a shunt that is constantly malfunctioning and waiting for an emergency is not a good idea.
So as I kissed my boy godbye in the OR I knew he was In very capable hands. Mom you would be happy I even had the Lourdes water with me and blessed him before leaving.
Cameron went in for surgery at 1:30pm and we saw him in recovery just after 3:30pm. If someone had told us this was going to be part of our thursday agenda, well that's crazy talk.
His eyes were open and the smell of surgery took me in. It's been two years and there is something about that smell you just never forget it. There were some tears from Cameron, a pink pull up later exchanged for a trip to the bathroom and resistance to keep his head at a 30 degree angle.
The dr report was "it was clear as mud". Part of the shunt was not working at optimum levels, part was, they replaced the catheter and pushed part of the device further into the ventricle. And despite the imaging showing some unfavorable anatomy dr bowman said he has much better anatomy than films would suggest. This is a good thing so we don't have to worry about placing the shunt in a different part of the brain at a later date. There was also surprise in the amount of calcification around the shunt. Apparently what she found is typical of a teenager shunt. So it was a good thing we did this even if it does not resolve the episodes.
So now we wait to see how he responds and if the episodes reduce, or with any luck never return. We hope we have not opened "pandoras box" by going into his brain but it was clearly a good call that we did it.
Cameron is doing great for just having his head sliced open.
He has ordered and consumed most of his "cheesburgerfriespeanutbutterandjelly" favorite meal, can't ask for more at this point.
With any luck we will be home tomorrow night!
During our trip to see the cvs specialist in Milwaukee yesterday Cameron slipped into another episode, less than a week since the last one. The meeting with dr. Li was very informative (more on that another day). We got back home and by 6pm Cameron seemed to be out of the episode. Only to slip back in a later that night. I slept next to him and it was clear we were back in the woods, little sleep was had.
Morning came and I headed off alone for the consult with dr bowman, neurosurgery, as Cameron was puking at home so dad stayed behind.
About 20min into the conversation it was decided he needed surgery today. Dr bowman noted his ventricles were almost non existent on film and the right side appeared collapsed. Given the frequency of vomiting episodes has been getting worse she came right out and said she was not comfortable with his situation. While he can live with CVS, he can not live with a shunt that is constantly malfunctioning and waiting for an emergency is not a good idea.
So as I kissed my boy godbye in the OR I knew he was In very capable hands. Mom you would be happy I even had the Lourdes water with me and blessed him before leaving.
Cameron went in for surgery at 1:30pm and we saw him in recovery just after 3:30pm. If someone had told us this was going to be part of our thursday agenda, well that's crazy talk.
His eyes were open and the smell of surgery took me in. It's been two years and there is something about that smell you just never forget it. There were some tears from Cameron, a pink pull up later exchanged for a trip to the bathroom and resistance to keep his head at a 30 degree angle.
The dr report was "it was clear as mud". Part of the shunt was not working at optimum levels, part was, they replaced the catheter and pushed part of the device further into the ventricle. And despite the imaging showing some unfavorable anatomy dr bowman said he has much better anatomy than films would suggest. This is a good thing so we don't have to worry about placing the shunt in a different part of the brain at a later date. There was also surprise in the amount of calcification around the shunt. Apparently what she found is typical of a teenager shunt. So it was a good thing we did this even if it does not resolve the episodes.
So now we wait to see how he responds and if the episodes reduce, or with any luck never return. We hope we have not opened "pandoras box" by going into his brain but it was clearly a good call that we did it.
Cameron is doing great for just having his head sliced open.
He has ordered and consumed most of his "cheesburgerfriespeanutbutterandjelly" favorite meal, can't ask for more at this point.
With any luck we will be home tomorrow night!
Sunday, August 29, 2010
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!
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!
Sunday, August 22, 2010
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"!
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"!
Thursday, August 19, 2010
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.
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.
Tuesday, August 17, 2010
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...
Monday, August 02, 2010
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”
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”
Tuesday, July 27, 2010
The Broken Cookie
Growing up one of my favorite memories is eating Pepperidge Farm Chocolate Chip cookies with my grandfather, Baba, and my brother. I’d dig into the bag, and without fail every time pull out a broken cookie. Baba would say “Rory, you always get the broken cookie” not in a voice of pity, but in way that comforted me. As this scene repeated itself over the years I loved this moment, I felt good about the broken cookie, because it was always my broken cookie and it was my moment with my Grandfather.
I’ve personally let my guard down to maybe 3 people in my life, where the words just start spilling out of my mouth, and the truths nobody really wants to hear are spoken, about how it feels to be Cameron’s mom. It’s not just the fears, the therapy/medical grind & the constant worrying.
The real guard comes down when the sadness is spoken, where the tears eventually start overflowing and the person listening isn’t sure what to do. The answer is just listen, as hard as it may be, as much as you want to try and fix it, and in turn, fix me. This situation, and me, as a result are broken.
I’m ok with being broken, that’s part of life.
Sometimes you just need to let it all out, let your guard down and say this is me, this is who I am & this is how much my heart hurts for my child. The silver lining in all of this is that Cameron’s heart is not broken, he is not sad, I will carry that for him as long as he’ll let me.
It’s not often you will hear me sharing these thoughts, but I think it’s a vital part of being a parent to a special needs & medically fragile child. We need to be able to speak the truths of this life with someone we trust.
Thursday, July 15, 2010
I hate roller coasters
I always have from a young age. And it appears the one we are riding is on full speed ahead these days with no signs of letting me off.
Every day is different, one day I am confident I can handle this all and the next I am falling apart. The littlest things can set me off into a tear filled spell. A photo of a friend getting married and the joy on her parents face when they first see their daughter on her wedding day. Good tears. The 8 year old child in the waiting room at RIC who can't even walk upright. Bad tears.
Today there have been many bad tears. We've been to 4 different specialists in the last 5 days.
- GI
- Orthopaedics
- Physiatry
- Neurorsurgery
- and then and hour long call with our pediatrican to review issues
GI put Cameron on a daily medicine in an effort to reduce the frequency of the CVS episodes, we had no issues last weekend. We do believe the trigger for an episode is excitement or stress, and I clarified with the GI Dr. if this was a psychological issue or a GI issue - answer: it's a migraine of the GI tract and is not psychological. Interesting, but the trigger seems to be related to what's going on around him.
This medicine will not cure CVS, but it should help, if it doesn't work we try another. Also increased the Zofran dose for during the episode so that we can ideally make him more comfortable. I am also working to see if there's any way I can get a home health nurse to administer IV fluids and the meds during an episode to reduce the length and severity of pain during the episode. This might be hard to pull off but we're going to try.
Orthopaedics and Physiatry were happy with Cameron - yeah!! Keeping the braces as is, and going to try and get him into some therapuetic horseback riding to strengthen his core.
Today was Nuerosurgery - I walked in thinking this would be a breeze. In reality it was not, as expected Dr. Bowman is not pleased about the development of CVS because of the shunt. She planned to do a full work up on him of tests, shunt tap and so forth. But after we talked it was decided this was not necessarry right now as I do believe we are dealing with CVS and not a shunt issue. There was talk about the size of his ventricles, they are getting smaller, based on what the NS team said in the hospital I believed this was a good thing. Bowman says "neither good or bad" just IS. Ok so we're non-committal, I don't like that, it makes me worry.
Ultimately she wants to be kept in the loop on the CVS episodes and anytime there is head pain we are to come to the hospital. She also squelched the ray of hope I have regarding shunt malfunctions. I was told by several while in the hospital: "the longer you go without a shunt malfunction/revision the less likely one is to occur" . Apparently this is NOT true. Sweet. Can happen any time, so the CVS episodes are going to be tense, as if they weren't already.
After a horrendous morning getting to this Dr. appt (yes, I got completely lost going to Arlington Heights - took me 1.5 hours!) we came home to learn my dad in the hospital for his heart, while all signs look to be ok, it's got me on the edge.
Our life these days is rough, really rough. And yet each time I walk into Children's I am reminded it could be worse, thank god it's not, because today I am done.
Every day is different, one day I am confident I can handle this all and the next I am falling apart. The littlest things can set me off into a tear filled spell. A photo of a friend getting married and the joy on her parents face when they first see their daughter on her wedding day. Good tears. The 8 year old child in the waiting room at RIC who can't even walk upright. Bad tears.
Today there have been many bad tears. We've been to 4 different specialists in the last 5 days.
- GI
- Orthopaedics
- Physiatry
- Neurorsurgery
- and then and hour long call with our pediatrican to review issues
GI put Cameron on a daily medicine in an effort to reduce the frequency of the CVS episodes, we had no issues last weekend. We do believe the trigger for an episode is excitement or stress, and I clarified with the GI Dr. if this was a psychological issue or a GI issue - answer: it's a migraine of the GI tract and is not psychological. Interesting, but the trigger seems to be related to what's going on around him.
This medicine will not cure CVS, but it should help, if it doesn't work we try another. Also increased the Zofran dose for during the episode so that we can ideally make him more comfortable. I am also working to see if there's any way I can get a home health nurse to administer IV fluids and the meds during an episode to reduce the length and severity of pain during the episode. This might be hard to pull off but we're going to try.
Orthopaedics and Physiatry were happy with Cameron - yeah!! Keeping the braces as is, and going to try and get him into some therapuetic horseback riding to strengthen his core.
Today was Nuerosurgery - I walked in thinking this would be a breeze. In reality it was not, as expected Dr. Bowman is not pleased about the development of CVS because of the shunt. She planned to do a full work up on him of tests, shunt tap and so forth. But after we talked it was decided this was not necessarry right now as I do believe we are dealing with CVS and not a shunt issue. There was talk about the size of his ventricles, they are getting smaller, based on what the NS team said in the hospital I believed this was a good thing. Bowman says "neither good or bad" just IS. Ok so we're non-committal, I don't like that, it makes me worry.
Ultimately she wants to be kept in the loop on the CVS episodes and anytime there is head pain we are to come to the hospital. She also squelched the ray of hope I have regarding shunt malfunctions. I was told by several while in the hospital: "the longer you go without a shunt malfunction/revision the less likely one is to occur" . Apparently this is NOT true. Sweet. Can happen any time, so the CVS episodes are going to be tense, as if they weren't already.
After a horrendous morning getting to this Dr. appt (yes, I got completely lost going to Arlington Heights - took me 1.5 hours!) we came home to learn my dad in the hospital for his heart, while all signs look to be ok, it's got me on the edge.
Our life these days is rough, really rough. And yet each time I walk into Children's I am reminded it could be worse, thank god it's not, because today I am done.
Sunday, July 04, 2010
12 Hours and some change
That's how long it took for Cameron to get out of the episode. We started at 7:20am and ended at 7:40pm. Not really that long some might say, some others might say it's really not that bad he's just throwing up, my kids throw up, I throw up - yeah it's unpleasant but it ends.
And end it did, thank god. But I have to be honest it's the longest 12 hours of my life when it happens, I wonder with each passing moment are we getting better or worse? Will this time be different? Is he deyhydrated, of course he is, he hasn't drank or gone to the bathroom since 8pm the night before! But is he in a dangerous zone for deyhydration? I used a syringe to force gatorade into his mouth, he probably got a total of 2 tablespoons.
There is no way to describe how awful it is to watch your child clearly in so much pain, and so miserable with no relief for hours.
At 6:30pm I called our neighbors over, one is a nurse and the other a fireman, I just needed someone to tell me if he was too dehydrated. They said he's ok, but if he vomits more it's probably time for the hospital and IV fluids. They probably thought I was crazy, not knowing his history.
And no sooner than they walked out my door Cameron throws up, we decide to give him a little more time to see where this is going. 20 min later, throws up again and within 5 minutes of the most violent act of throwing up (keep in mind there is nothing to even get rid of) he stands up from the fetal position he has been in for the last 12 hours, opens his eyes and says out loud in the Cameron voice we all know and love "I want some apple juice, I need to go potty!" and trots off to the bathroom.
I swear it's like the exorcist left his body or something, seriously these episodes should be on video, to watch him come out of this one was just crazy.
For those who are counting, which may be just us - ha!, we are on episode number 7 since May 8th. I have been doing tons of research on CVS and after last night I spent two hours reading more articles, I just want to figure this out.
We are lucky his episodes are only 12-14 hours based on history, as some kids do this for days. I could not handle days, I just could not, a hospital stay would always be in order. So we're lucky on that count, so far.
I hope the GI doctor is ready for us Friday, part of me wants to call them ahead of time and say book two hours for us! One of my big questions is how can we prevent episodes, b/c the Zofran did not help abort the episode, so should we go to the hospital when he's in the episode to get him out faster? The list goes on.
We are going to make up the Saturday parade we missed in Riverside and pretend we live in Hinsdale for their parade tomorrow.... shh... don't tell anyone!
Today we took a train ride, something Connor has been begging us to do. It was nice to have a fun day!!
Saturday, July 03, 2010
Stuck
It's a beautiful 4th of July weekend, truly beautiful. Cameron and I have been posted in our bed since 7am and with each passing hour he gets worse. The CVS has reared it's ugly head again.
We had a short lived episode about a week ago, headed off to Children's at 2am to get the blood work done and hopefully get him out of the episode fast. In typical Cameron fashion, he presented in the ED (emergency dept) to not be in a full blown episode, I told them as such, we did the blood work, got some Zofran and were home by 7am.
This week I spoke with the Dr's to determine if we needed to repeat the blood work b/c I wasn't sure now if it was really a true CVS episode. Who knows if it was...
What I do know is we are now in the middle of full blown episode and it sucks!
You just lay next to Cameron, try to get him comfortable and nothing works, he wriths around in pain, the nauseau is unbearable, and then finally when he throws up for a few moments you see he feels better and then he just collapses. If we're lucky he goes into a deep sleep for a little bit, that's easier to watch than the writhing around in bed.
So it's 1pm and he's thrown up 6 times. I am playing the game in my head - do we go to the ED to get fluids and some drugs to try and snap him out of the episode or play it out at home a little longer. I gave him zofran at 7am as I saw the episode approaching, and actually thought I had helped as he didn't actually throw up for an hour after that, but since then it's been downhill.
In the back of my head, I worry is this the time it's the shunt? I truly believe it's not, but every single time this happens we have to wonder. Even the Dr told me again this week to always remember that there is no way to know.
So this is our life now, instead of going to the Riverside parade today, loading up on candy, seeing all the fire trucks and Judy Barr Topinka(yep, that's right she's a Riverside resident!) Cameron is miserable and I am logging the episode, hovering over him waiting for the next round of vomit.
We see the GI doc in Clinic this coming Friday, I am hopeful we'll come up with a plan to prevent episodes.
It's times like these that remind me how different our lives our from many, we worry about Cameron most every moment, we walk around on eggshells, we try to work our therapy homework into each day, we fight with insurance, we fight with hospitals, we fight with doctors to not give our son any more radiation. We fight to have a typical July 4th surrounded by friends, instead we are lying in bed on this beautiful sunny day.
Here's hoping the episode passes soon.
We had a short lived episode about a week ago, headed off to Children's at 2am to get the blood work done and hopefully get him out of the episode fast. In typical Cameron fashion, he presented in the ED (emergency dept) to not be in a full blown episode, I told them as such, we did the blood work, got some Zofran and were home by 7am.
This week I spoke with the Dr's to determine if we needed to repeat the blood work b/c I wasn't sure now if it was really a true CVS episode. Who knows if it was...
What I do know is we are now in the middle of full blown episode and it sucks!
You just lay next to Cameron, try to get him comfortable and nothing works, he wriths around in pain, the nauseau is unbearable, and then finally when he throws up for a few moments you see he feels better and then he just collapses. If we're lucky he goes into a deep sleep for a little bit, that's easier to watch than the writhing around in bed.
So it's 1pm and he's thrown up 6 times. I am playing the game in my head - do we go to the ED to get fluids and some drugs to try and snap him out of the episode or play it out at home a little longer. I gave him zofran at 7am as I saw the episode approaching, and actually thought I had helped as he didn't actually throw up for an hour after that, but since then it's been downhill.
In the back of my head, I worry is this the time it's the shunt? I truly believe it's not, but every single time this happens we have to wonder. Even the Dr told me again this week to always remember that there is no way to know.
So this is our life now, instead of going to the Riverside parade today, loading up on candy, seeing all the fire trucks and Judy Barr Topinka(yep, that's right she's a Riverside resident!) Cameron is miserable and I am logging the episode, hovering over him waiting for the next round of vomit.
We see the GI doc in Clinic this coming Friday, I am hopeful we'll come up with a plan to prevent episodes.
It's times like these that remind me how different our lives our from many, we worry about Cameron most every moment, we walk around on eggshells, we try to work our therapy homework into each day, we fight with insurance, we fight with hospitals, we fight with doctors to not give our son any more radiation. We fight to have a typical July 4th surrounded by friends, instead we are lying in bed on this beautiful sunny day.
Here's hoping the episode passes soon.
Thursday, June 10, 2010
Leaving the Comfort Zone
We've officially left this arena, we are back to the very uncomfortable zone, where we worry with each day, question every action and wonder about the future.
I could go on for days about what has transpired over the last month, and there are so many posts that should have been written, but life has gotten in the way of my "writing" time. If it's any indication of how intense things have been I didn't post a special message for either boy's birthday. I will be doing that eventually, but for now here's the situation.
History:
Cameron has been throwing up on the weekends only (yes, we find this as strange as you and all the doctors do), for the last 5 weeks. After a chest/ab x-ray didn't show anything last week we were instructed to bring him to the ER during the next episode so that they could better evaluate him.
Normally when he vomits we immediately worry about the VP Shunt for the Hydrocephlaus and a possible malfunction as this is one of the symptoms. But with each one of these episodes we never rushed to the ER because we've gotten comfortable waiting an watching at home. We'd talk regularly to our pediatrician and always had a game plan, let's give him a few more hours, and miraculously he'd recover.
So as last Friday approached we were all anxious, waiting for a vomiting episode to begin, prepared for our ER trip. It happened Saturday morning, so off I went with Cameron while Dad stayed back with Connor. Cameron grew progressively worse and by the time we arrived at Children's he showed them first hand upon greeting triage what the problem was.
The tests began, the consults from various departments began. Our peditrician, surgeon and others felt this was likely intermittent small bowel obstruction. And so we urged the ER team to start there and then work our way to the Shunt if we came up empty.
The following tests were done all before noon on Saturday:
- KUB X Ray
- CT Scan
- Belly/Kidney etc. Ultrasound
- Chest X Ray
And we had no answers, but a child getting sicker and sicker. Dr. Reynolds (our pediatric surgeon) admitted us to her service after watching poor Cameron lie in pain and then vomit practically on her in the halls of the ER. We seriously couldn't make it from one room to the next at times without throwing up. The good news it wasn't very productive, just dry heaves, but so painful to watch.
It was decided at this point to admit Cameron, at some point that afternoon we made it to room 588. Cameron was miserable, barely with us, only rising from his fetal position every 30 minutes to heave. While the Zofran (anti-nausea med) was keeping him from the physical act of vomiting/heaving, it was not stopping the wave of nausea. I pressed the various Dr's to please get a UGI and other tests.
It's amazing how much can't happen at a hosptial on the weekend unless you are truly dying. While I am glad Cameron did not fall into this category it made for a very stressful and heart wrenching few days.
We were to wait until Monday for an MRI of the intestines, abdomen etc. So we accepted this and Cameron returned to the Cameron we know and love by 9pm Saturday night, just in time for bed. Sunday was all about keeping Cameron happy and busy as he could not eat all day in prep for the MRI and he hadn't eaten since Friday!
Lucky for him, they cleared him to have a meal at some point to fill his belly, he ordered:
Chesseburgerfriespeanutbutterjelly - yes, just like that, as if it was one item on the menu. He enhaled it all according to Dad (I had to leave to take a shower!) for the sake of all involved.
Monday morning rolls around and we are tired of this entire process, the no eating, the sharing of rooms, the keeping a 4 year old happy in a box etc.
This kind hearted GI Fellow arrives and tells me there will be no MRI this morning, and they want to do a UGI. I was not happy and made it clear, in a nice way, he understood and I called the necessary people to get Dr. Reynolds (who also happens to be Chief of surgery) to see me and explain what the hell was going on b/c I could have gone home with him yesterday and done a UGI and Endoscopy all outpatient.
Theproblem with the new "state of the art MRI" because how can you get a 4 year old to drink the contrast and then intubate him under general anethesia, the risk for aspiration is too high - or this is what they told me. Makes sense.
Reynolds got right on the phone and begged the various teams to get us on the schedule for a UGI that day and Endscopy for Tuesday.
UGI was torture, Cameron did his best to drink the barium, but ultimately we ended up giving him an NG tube to get it down (tube down the nose to belly). He HATED this, but it worked.
Endoscopy was Tuesday, he received general anethesia, it was a very quick procedure.
All of the tests showed NOTHING, and so we are left with a looming diagnosis of Cyclical Vomiting Syndrome. This is only diagnosed by process of elimination.
Which we have pretty much done.
One test remains, a Metabolic panel on his blood. So the next episode of vomiting we are to take him back to the ER to get blood draw and they will then help us get him out of the episode with Zofran and IV fluids.
Cyclical Vomiting Syndrome is an unfortunate diagnosis for anyone, speficifcally for Cameron given the VP Shunt. As they share so many of the same symptoms of a problem. (Vomiting, Head Pain, Lethargy)
I am going to do another post in the future about CVS, but for now I wanted to get the update out to everyone.
There is much more to say, emotions and fears to cope with, and new protocols to be learned.
If you want to learn more about CVS - here are two good links:
http://digestive.niddk.nih.gov/ddiseases/pubs/cvs/index.htm
http://www.cvsaonline.org/ -
if you want to get really in depth on one Dr's treatment guidelines read this: http://www.cvsaonline.org/pdfs/2008%20Empiric%20Guidelines%202045-3.pdf
Thank you to all for your care, support and concern. It's been a very rough time.
xo
Tuesday, March 09, 2010
Crazy Hair
Cameron has crazy hair, we've known this for quite sometime! Recently he underwent and EEG, checking for seizure activity and so we would have a "baseline" should something develop later in life. This was by far the craziest hair he's ever had.
This test required us to deprive him of sleep, went to bed at midnight and up at 4am! Outside of a pretty good head injury as he slid into a open drawer about 10:30pm he survived this sleep schedule. In fact, I think he enjoyed the novelty of it all.
Dad spent much of the evening playing music with him and I woke him up early in the morning for a special 5:30am pancake breakfast at Lou Mitchell's with Aunt Amy.
He didn't really want anything to do with the Mickey Mouse pancake, donut hole or ice cream we tried to serve him, he just wanted to go to bed.
7am finally arrived and he dozed off on command for the test. Despite the "look" of this test it was the easiest one we've undergone.
I was telling another mom who's son had an EEG earlier on in life, that Cameron was going in for one soon, she told me she had to leave the room. I understand, and had this test taken place a few years earlier I likely would have done the same, but after close to 4 years of tests it takes a lot to get me. I am both at peace with this and disturbed by this fact. ha.
We were home by 11am and all was right in the world. Best news of all, results were just received and all looks good. Another test down!
Way to go Cameron....xo
This test required us to deprive him of sleep, went to bed at midnight and up at 4am! Outside of a pretty good head injury as he slid into a open drawer about 10:30pm he survived this sleep schedule. In fact, I think he enjoyed the novelty of it all.
Dad spent much of the evening playing music with him and I woke him up early in the morning for a special 5:30am pancake breakfast at Lou Mitchell's with Aunt Amy.
He didn't really want anything to do with the Mickey Mouse pancake, donut hole or ice cream we tried to serve him, he just wanted to go to bed.
7am finally arrived and he dozed off on command for the test. Despite the "look" of this test it was the easiest one we've undergone.
I was telling another mom who's son had an EEG earlier on in life, that Cameron was going in for one soon, she told me she had to leave the room. I understand, and had this test taken place a few years earlier I likely would have done the same, but after close to 4 years of tests it takes a lot to get me. I am both at peace with this and disturbed by this fact. ha.
We were home by 11am and all was right in the world. Best news of all, results were just received and all looks good. Another test down!
Way to go Cameron....xo
Wednesday, February 03, 2010
The Gray Area
I had my first offical "mean" moment regarding Cameron and his abilities. I knew this day would come when someone would call him "special" in a duragtory way, but I never thought the word "Mental...." would be used. Really, I didn't.
The PC terms are "Developmentally Delayed", "Special Needs", "Intellectual Disablity".
In fact, if you've been watching the news lately there's a whole issue with a comment Rahm Emanuel made using the word "Retarded" in a closed door meeting. About a year ago a similar issue came up when Obama made a comment on The Tonight Show equating his bowling skills with that of a Special Olympics participant.
Now when the Obama thing happened last year I recall our PT at the time (who has a Downs Syndrome son) her and I were really offended by this and if I hadn't been so overwhelmed with daily stuff I probably would have written a letter to someone, somewhere.
Retarded, Mentally Retarded and the like are NOT appropriate. But people use them all the time, my own friends will say the word "Retarded" when describing something. I have never scolded them, and never will. It's not my thing. Because I know I've used the word before as well, not since Cameron was born, but that's just one of the many things I've changed since Cameron.
What is my thing is to tell EDUCATORS they need to get an education about what "special needs" means, it does not mean "Mental", "Retarded" or any other duragatory word you can come up with. As an educator you need to know that a special needs kid can do many, and in some cases, all the things a typically developing child can.
So what happened??
We are planning to send Cameron to a typical Preschool next year in addition to his Special Education classroom. Not only is this something Cameron's doctors recommend, but so does his teacher. Getting Cameron used to a typical school setting is an important part of development and we think he'll do well.
I have visited 5 area preschools, and as we were struggling to make our choice having narrowed it down to our church preschool and another area school, a local neighbor, who also happens to be a developmental therapist, highly recommended a school in the next town over. I was excited, not only was it nearby, it wasn't super expensive and with the thumbs up from a friend I just thought this was the one. Up until this point we didn't feel settled on a choice.
I called & spoke with one of the educators, after she gave me her spiel, I said I wanted to share a little about my son. I didn't go into great detail, I have learned to reduce Cameron's "story" to only the necessary information, about 6 months after he was born I think I scared off at least 5 good sitters with his "full story!".
I mentioned things like - he's in our local Early Childhood class, he's developmentally delayed - but if you saw him at the park you'd likely never guess this, he wears ankle/foot orthotics, but I also said he's high functioning, can talk, walk and he's even potty trained.
At this point the woman informed she was "the aide" for the class and I should speak with the teacher. So she passed the phone over and says to Teacher
"This is Rory, her son is "MENTAL..." I don't know what, if any, word followed that statement.
But I seriously let it go, because she didn't understand, so I started the same story about Cameron to the teacher, rather quickly she told me their Board of Education (this is a private CHRISTIAN school) does not like them to work with special ed students b/c they are not licensed Special Ed teachers and recommends we go to our local district for that". I explained I could certainly understand this, but that he's really quite capabale, she asked can he do stairs. I replied yes, I would ask that the classroom aide keep an extra eye on him initially until he's comfortable with the new surroundings. She repeated the same mantra, basically we don't do special needs.
I quickly ended the call and burst into tears in the parking lot of Panera. I had an appt at one last school in 20 minutes. I had to get myself together.
This is just the beginning of what will follow as we fight to get Cameron a good education. To try and make people understand that kids do not all fit into a nice neat mold, they come in all shapes, sizes and different levels of ability.
I recounted this story to my good friend Mollie, who's daughter also has Hydrocepahlus, I feel so lucky she's in my life! Her and I have been swapping the stress over finding the right preschool for our kids. And she said it perfectly - what happens to the kids in the Gray Area?
Cameron is not severely impaired, it's not cut and dry with him - Special Ed or Inclusion - he deserves a chance in a typical classroom. He is in the Gray Area.
The good news in all of this, of the 6 schools I called and visited, only ONE did not want him. The rest of them were at the very least OPEN to working with him, and two were very accommodating.
So he'll be going to one of those two schools, and he will succeed.
It's preschool, and I feel as though this last week has sucked the life out of me as if I spent a 7 hour day at Chilren's.
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