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You know that feeling of dread when you get bad news? I have had the feeling to many times to count since September when Keegan was brought into this world. The most recent occuring this evening just as I was leaving work to go home for the day.
Keegan had a CT of his brain done today for what our Pedi thought was "excessive englargement" of his head in the past couple of months. I didn't really sweat it, we have had them done before and nothing really ever came of it; no fluid (water) on the brain just residual blood from the uterine stroke. We got there, got in fairly quickly, and had it done. He did such a great job staying still.
When the phone call came I knew it was probably the doctors office and when I heard the familure nurses voice on the phone, chipper as always, I knew everything would be okay. I was WAY wrong. She proceeded to let me know the CT found water on Keegan's brain; otherwise known as Hydrocephalus. She then told me that tomorrow (friday) morning she would be calling Dr. Walsh at Riley, our neurogenetic doctor, and ask him how he wants to proceed. She said they will ask if he would like to see Keegan sooner than his May 24th appointment and whether Dr. Walsh wants to refer us to a Pediatric Neruosurgeon or they should.
Before the conversation was even finished I started FREAKING out. I point blank asked Mary, our nurse, what this meant. I then had to rephrase because I know what Hyrocephalus means but what does it "mean." She said she would get with our Pedi and ask him. Are we dealing with Mental retardation, seizures, eating problems???I have sooooo many questions running through my head.
I know Dr. Crecelius will get back to us as soon as possiable but it doesn't seem fast enough. I want something to be done about this yesterday. You never want your kids to suffer and when they do you just want to be able to help and take that away. I can't do that for him, I would if I had the chance. He has only been in this world a short couple of months and had to deal with medical needs far beyond his years.
I will update when I know more. Please continue to pray for us, we could REALLY use it!
Thursday, April 8, 2010
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i am so trying to think positive in that the last ct didn't show anything and so maybe this is a new finding.... newly found and quickly taken care of... so many many people are praying for our little keegan that a good outcome is sure to come his way.. he has met all the other obstacles head on and came out on top.. love you all so much.. i can't really imagine how hard it is to absorb it all, but i know how strong you both are and i am here always if you need anyting at all... love, mom
ReplyDeleteBeth, I am so sorry to hear that. I will be praying for Keegan and for you guys to have strength. Keep us updated!!
ReplyDeleteI am so sorry to hear this. I will continue to think really positive thoughts and keep y'all in our prayers.
ReplyDeleteStay Strong Momma!
Joanna
Thinking about you 3 and praying for the best!
ReplyDeleteAimee
I will be praying everyday for strength for all of you and for God's healing hand on Keegan!
ReplyDeleteLove you,Erica
Beth I know how hard it is to have such worries about your child. I wish I could say something to take the worry away. Just remember God has had and still has a plan for Keegan. We cannot question (although it is easy to do I have done it) Trust in Gods guidance. I will continue to believe in the power of God. Love, Your new extended family "the Brewster's"
ReplyDeleteSo sorry you received bad new. I hope they call you with more answers very soon.
ReplyDelete((hugs))
Sarah
I am keeping your family in my prayers. This is one of those things that I just cannot understand in life...
ReplyDeleteJust found your blog on Theta Mom. My boy was 30 weeks premature (he is now 6). The first year was very tough..many issues, doctors visits, etc.
ReplyDeleteSending my thoughts and prayers.
Try not to get too worried yet. It is great that they found it so early! (I have known a family that didn't have it discovered until very late) Try to think positive.
ReplyDeleteIt's not going to be easy, but try not to worry about brain damage yet.
ps I found your blog through Thetamom and just wanted to tell you that although my twin son does have definite brain damage, he is absolutely the light of my life and although some days are really a struggle, every day is still such a blessing. Try to hold that in your heart on the days it feels really bad. (((HUGS)))
You and your son are in my thoughts!!! ♥ ♥
ReplyDeleteDevan @ Accustomed Chaos
http://accustomedchaos.blogspot.com
Beth & Ryan,
ReplyDeleteI pray for Keegan every day. My grandson had a stroke at birth, seizures, CP, torticollis, etc. He has made a lot of progress. I know what you are going through. Just continue to have hopes for your little boy.
Love, Cousin Sharron Parzick
Hi, my name is Bonnie & I found your blog today. I just wanted to say that I was diagnosed with Hydrocephalus as a baby & I have a ventricular shunt. I am a twin & we were born 6 weeks early. I had my shunt put in at 11 months old & had a seizure I think shortly after. BUT, I have been very lucky & I've never had any other problems with my shunt. I have led a very normal life. I'll be 29 years old this month & I'm sure shunts have gotten much better! I'm just now reading more about your story & don't know all the depths of what Keegan has gone through. I'm praying for you & your sweet little Keegan. I just had a baby boy December 21st (our first) & I can't imagine going through what you are. Sending lots of prayers your way!
ReplyDeleteBonnie