My auntie M said "to go buy a lottery ticket" the other day, if any one has a chance of being "THE ONE" to win, it would be Brody. This kid is pfighting against all the odds and coming out a winner - so far. He is 1 of 13 in the world with his trachea sleeve battle, 1 out of every 100,000 child that is born with Pfieffer syndrome, and of course he was in the 5% of the "brain shunt" population to get a BROKEN shunt. He is my lucky little angel.
The friday before Christmas, was the big "B" day - brain surgery. It wasn't an extensive sort of brain surgery, but it was still brain surgery. The day went VERY well. Better than I expected. Except for the delay on surgery time. It went from 130p to 330p. Not that big of a deal, but you try explaining to a hungry 3 month old why his momma isn't feeding him. Dr. G, our neurosurgeon, is a great dr. One of the best, or thats what I hear. He came in, explained the procedure, threw a few jokes in there to take the edge off, and wheeled Brody away. I was comfortable at that moment and knew my angel would come out strong. 1 1/2 hours later, we got our page that he was done. Heading to recovery, and very much alive. I always hate the walk into recovery, its hard to see your baby in that "state". Pale, shivering, still....but this time was different. As soon as he heard me tell the nurse hello, that kid screamed his head off. If you could hear him cry, you would've heard him all the way out the door. As soon as I could, I picked him up and held him and we cuddled for at least 2 hours. Sweet sweet victory. He did really well with recovery. By saturday afternoon they were releasing us, and we were free as birds to go home. The next couple of days were routine. We were glad to be home for Santas big visit. It was so nice to have our family drive up Christmas day to share the holiday joy with us. I cooked all day, Gabe cleaned up after our mess all day, and we just soaked in all the wonderful family time. It was amazing to have so much love and joy in our house. I don't think Brody was put down 1 time. He sure is a spoiled little cuddle bug.
Thursday was a different story. Gabe and I both had a long list of "chores" to do. Our nurse for the day had noticed a rash on Brody and his little bit of fussiness...We gave him some tylenol and put some cream on his rash, and all was well for a little bit. But by the time he woke up from his afternoon nap, this momma bear was very concerned. The side of his head where his shut is was swollen beyond belief and his "soft spot" on the top of his head was sunken in. Not a sight anyone wants to see. I called the neurosurgeon and sent them pictures, and 2 min after receiving the pics, they called back and said take him to the hospital and they would admit us. After getting there, they took us down to get a CT scan and and X-ray....and it showed exactly what they had expected, his shunt was broken and wasn't even attached to his ventricle. The fluid was building up. Although he wasn't showing symptoms of serious discomfort, if we would've waited a little longer, he would've been in some pain. My poor baby, my heart was hurting for him. All I wanted to do was cuddle and take his place. What are the odds that this would happen to him. They couldn't really tell us why it happened. Only, this happens to 5% of shunts placed. It could have slipped out, it could have not been placed right, who knows... all I know is Dr. G is now on my "list"...my list of Drs that I don't want to see ever again... there are now 3 on that list. I know it may not be his fault, but I want an explanation. I want to know why MY baby had to deal with this. So here we are, a week later, going back in for his 2nd brain procedure in a week. POOR LITTLE GUY. This time we had Dr. L. Not my favorite, but he is the one doing it. If I could ask for his nurse practitioner Maura to do it, I would. Shes my new favorite...and its not just because she brought us starbucks friday morning. She just knew her stuff. So Friday afternoon, they wheeled Brody back for a shunt re-do...hopefully the only one they will have to do. Like the first time, he did amazing on recovery. He really is a strong little man. Its like he goes in and says... "I'll be stronger this time". He has a bigger scar on his head this time...but hey..chicks dig scars, right?? So, the post op CT scan showed that the shunt was in place and draining properly..... we are free as birds to go home yet again. No telling us twice... we ran out of that place.
We are exhausted and drained - emotionally, mentally, and physcially - the hospital sofa beds are hard on your back, but WE ARE HOME... safe, alive, and recovering well.
Thank you EVERYBODY under the sun for the prayers, thoughts, well wishes, calls, text, messages, EVERYTHING. Yall are OUR support system, and we would be lost with out yall. Thank you for supporting us. Its one more bump in the road we got through. PRAISE JESUS.
Now, that we are home and recovering, its back to the daily grind. Physical and Occupational Therapy. I pray that Brody starts to get on track with his "grabby" hands and hits the milestones that we need to be at... I know I shouldn't stress about the little things, but what mother doesn't want their child to play, and grab, and put things in their mouth. Even if it takes time, Im sure we will get there.
Its 2 days until 2014... a new year that WILL bring NEW CHEERS..... I am faithful, that we will continue to have special memories with our Brody Bear, and we will continue a victorious PFIGHT for him. I know we have some MAJOR surgeries coming up this year, but it won't stop us from PFIGHTING...one day at a time, one prayer answered at a time, and one victory, big or small... its all GOING to happen in time. And, I take it as a sign that as I finish writing this, the song "Jesus take the wheel" by Carrie Underwood comes on. Im letting go and letting God do his thing.
I pray that EVERYONE of you are blessed with health and happiness this New Year. Keep Pfighting for everything you believe in, I know we will.
http://www.gofundme.com/58c7p4
Love you!
Stephanie
You're such an inspiration and a wonderful mommy. Happiness and prayers for your family and amazing little guy! Happy New Year!!
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