June 1, 2009
First and foremost Kevin and I want to thank all of you SO MUCH for how you all banded together recently to lift up our son in prayer. I have been told that the prayers went out all over this country for him and I must say...we DEFINITELY felt the prayers and saw how quickly God moved on behalf of our lil man! It never ceases to amaze me how quickly our brothers and sisters in Christ will come together for us when we need them most.
As most of you know Noah has been having episodes of vomiting for the past several months and throughout this time we have been back and forth to several doctors to try and figure out what is going on. At first, we were told he is just suffering from stomach flu and being a child in school with an already weak immune system we just have to let it run its course. Ok, we'll except that for the first 2 times, but going on 3 and 4 and 5, I just knew it was something more than that. So Kevin and I started to mark his episodes on the calendar and we very quickly noticed a pattern of every 2 weeks for 3 - 4 hours in the morning, every 20 to 30 minutes. Then the last of the vomiting would taper off around 11am or noon and he would be completely fine for the rest of the day. Eating, playing, acting as if he hadn't just spent the morning vomiting. In the past couple months Kevin did some research on-line and found something called Cyclic Vomiting Syndrome (CVS) and it sounded very similar to what Noah was experiencing. The "scheduled" vomiting (making it cyclical), the associated pain and then all of a sudden fine as if nothing had happened. So we printed it out and took it to Noah's pediatrician. Unfortunately, CVS isn't something easily diagnosed. There is no simple test to diagnose it. They basically have to test for everything else and once everything else is ruled out, they diagnose whats going on with CVS. So Noah's PED sent us down to UVA (our home away from home) to see a GI Specialist (Dr. Barnes).
Upon seeing Dr. Barnes he also mentioned the CVS, but had to rule out some other things first. So he sent us home to do a "clean-out" that weekend of Noah's bowels. This resulted in Noah becoming very sick again. Dr. Barnes suggested we get a shunt work-up for Noah because the episodes seemed to be coming on my frequently. So upon his next vomiting episode, which was this past Monday, we contacted Noah's Pediatrician and took Noah in to get a shunt work-up done. This consisted of a CT scan of his brain as well as an x-ray. The work-up proved to be inconclusive. His Ped said it looked as if his 4th ventricle was slightly larger than the last scan we did, a year ago and he suggested we contact Noah's neurosurgeon. Being that it was a Holiday we waited till Tuesday to contact them.
On Tuesday morning I was on my way home from Kayla's PT appointment when I got a call from Noah's school that he wasn't feeling well and that they had him lying down with a pillow and blanket. So I contacted Children's Hospital and they suggested I go ahead and bring him in that day with his scans from the day before. So I had to go back to the Winchester Hospital to pick up the scans and as I was doing that I received a call from Noah's school again that he had started vomiting, had a seizure and stopped breathing for a couple seconds, but that he was breathing again and on his way to the local hospital. I was at least 40 minutes away from Noah and I knew that Kevin was even further. As panic set in, I just began to cry out to God. I prayed for protection over my son, for God to breathe his PERFECT breath of life into my son and for Him to help me calm down so I could drive and get to my son safely.
Once at the hospital I wasn't getting any clear answers about what happened and even the doctor just seemed completely out of sorts (in the 2 times I have been to this hospital, this seemed to be the way these doctors "work"...not good). I must say though, on behalf of Noah's teacher's and school...they were amazing and I am so grateful to them for helping to take care of Noah in the best way they knew how. I think they handled the situation completely professionally and it is very evident how much they love those children they work with...including my son.
Noah was flown to DC Children's where they ran a BUNCH of tests, scans and everything you can think of to try and figure out what was going on. We saw Noah's neuro-surgeon who soon ruled out any shunt malfunction. PRAISE JESUS! He said Noah's ventricles looked fine and that the shunt appeared to be functioning properly. We also saw a neurologist and had an EEG done. The EEG showed no seizure activity and the neurologist believes the seizure was a result of the dehydration and stress from the episode he had. We also saw a GI specialist while we were there and between her and the neurologist, they both strongly believe Noah has CVS, especially considering my family history with migraines (CVS is of the migraine family). There are still a couple more out-patient tests they would like to have done to rule out any other scenario, but they are currently treating him for CVS. Noah will have to see a neurologist on a regular basis and have just a couple more visits with his GI Specialist.
So in hopes of ending this novel I have written and let you all go on about your day...I just want you to know how much Kevin and I appreciate and love you all. Your support and prayers last week really kept us 'afloat'...and not just last week, we realize its been on-going. Sometimes I wonder if its ok to continue to ask for prayer support as much as we do...as if one has a limit on how much prayer they can ask for. It really blesses us that you all continue to pray for us and with us and continue to befriend us through it all...that you haven't given up on us.
Much love and MANY BLESSINGS to you.
Kevin, Erin, Noah and Kayla