Hey Everybody...
What a day today has been! Over the last week Willis and I have been constantly educating ourselves on "the vein of Galen" through hours of internet research! Every case study that we read online tells us that it is a malformation that takes place during the sixth and eleventh week of gestation. It is normally seen in association with severe hydrocephalis and conjestive heart failure. Most babies that have a malformation in the vein of Galen are always detected intrauterine and most all never see two days here on earth, because their little bodies can't handle how hard it's working to stay alive. With this in mind, I couldn't help but retreive the ultrasound images from Dr. Shipley (my high risk OBGYN) while Parker was still forming in my womb. Parker's brain has been under such scrutiny for the last 19 months that I just knew something would have been missed on those images. Unfortuntely, they only seemed to display the posterior ventriculomegaly and that his corpus collosum was there...which we are extremely thankful for! But he did mention that Parker's ventricles should be a 1/3 of the size that they are, and he can't really tell us why they are dilated and what could have caused it to begin with. You all know that I am a mom of many questions and a very proactive parent.....and when you tell me something is wrong with my babies...the words "rare" and "brain" don't sit well with me. So....I called another meeting with our neurologist and saw him this morning with alot of questions. My primary question to Dr. Morgan last week was "why was this malformation not mentioned in the first MRI report?" Dr. Morgan let us know that Parker's head circumference had grown one cm since the last scan and they were able to see more because of the head growth. This still left us confused when if in fact he has a true malformation then it would have presented itself before now....possibly. So this raised enough question in Dr. Morgan to have the head doctor of Radiology take a second look at both MRI's comparitively and let us know if they missed something.....and that they did. The possible malformation was clearly on the first MRI and the second as well, so we were right. Thank God they looked again because the first MRI notes from the radiologist read "Follow-up MRI could be considered in one year's time to evaluate for continued appropriate interval myelination pattern" the second , taken only one month later reads "Large caliber straight sinus, Vein of Galen, and very large caliber right transverse sinus with developmentally hypoplastic or absent left transverse sinus, there may be accompanying enlargement of the left posterior cerebral artery, Findings are concerning for an AVM/AV fistula. These may reflect large collateral venous channels. CTA or even MRA for further evaluation." BIG difference in the reports right? Before our appointment this morning Willis and I found that most all malformations were found through the MRA (magnetic resenance angiogram). This is a study that focuses solely on the arteries of veins. Dr. Morgan has agreed, with us, that this is a much better option as opposed to the CT-Angiogram. I did ask Dr. Morgan this morning if there was any other option for treatment if Parker does have a malformation and he said "no...surgery is the only option". Not to mention Dr. Morgan has only seen 2 malformation vein of galen cases in 2 years....and we are number 2. It never makes you feel all that great as a parent when a specialist tells you that there are not other options....followed by...."Because it is so rare you probably know more about the vein of galen than I do at this point". So he encouraged us to go home and continue to learn more about it, and we would go over the formal results of the MRA/MRV four or five days after the scan was given. Other than that he would call us himself if there was need for urgent concern. Our date for the procedure is July 23rd @ 8:30am. Please continue to pray hard about our little man's brain. I completely broke down last night after reading several case study on post surgical results and it upset me so bad that I am not even going to share them with you. I told Willis laying in bed last night that I feel like we are constantly having to fight a battle to keep Parker here with us....and it wares you down so bad at times. I know in my heart that God has such mercy and grace for his children. I am just so ready for a doctor to look us in the face and say....All of the tests are negative....Take you baby home and enjoy him....Everything looks great! Unfortunately, we are still surrounded by words that have haunted us for the last 19 months.... unanswered questions, rarities and medical anomalies! Sometimes in our lives....we don't get the answers we want when we want them....but we have to be reassured in knowing that God will answer them in HIS time and in HIS time only....and that is better that mine because HIS is PERFECT!!!
Love In Christ....
The Crafts
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