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
