I am constantly reminded that nothing goes as planned and nothing is as it seems. This is not always a bad thing. It tests our faith and courage, and keeps us on our toes. I always say life is an adventure. And all adventures have good moments and not so good moments. What does all this mean to us...well let me share.
Today we headed back to TCI (The Chiari Institute) to have Brooke's staples and stitches removed. The nurse takes us back and tells Brooke she can have a surprise if she lets her pull off the tape and bandage securely sealed to Brooke's head and hair. Brooke knows this means a big ouchie and immediately starts screaming. This sends poor Chandler into a panic, because he now cries everytime his sissy cries. (and it is a deep sobbing cry, not his normal one. :( ) So my mom quickly takes him out of the room. The nurse, seeing that we will need help calls two more nurses into the room. They try to entice Brooke with bubbles. I knew they meant well but I told them, "I think we need to just hold her down." So myself and 2 other nurses hold her down, while the other one pulls off the bandage.
Now the staples. The lay out the tools and the one nurse swabs with iodine, while we are still holding Brooke down, who is still kicking and screaming from fear. My nurturing mom steps in and thinks, "Pick up your daughter, cuddle her, kiss her, tell her it is all going to be ok." But then my Reality Check mom jumps in and says, "Kisses later, help the nurses hold her down, don't cry, and don't faint! There is just no time for any of this!" So out comes the 1st staple. Can I just say, it is clear to me more than ever that God did not call me to be a nurse. After the staple came out I knew something was wrong, because the nurse just stopped. They told me I could hold Brooke because there was a fluid leak.
So there we sat waiting for the neurologist to come in and look at the incision. When he came in, he informed us that there was swelling around the Bovine Patch. He did not feel it was a CSF Leak (Cerebrial Spinal Fluid). But he did feel that Dr. B needed to look at it. He also did not want anymore staples to come out. Dr. B was in surgery, so they would call us later with more details. They wrapped her head tightly with an ace bandage.
I decided I needed a cold Dr.Pepper with Ice. We went on a search for one, but New Yorkers appartently do not like DP??? Even Taco Bell did not have it! And if you know me, this was a great disappointment and discouragement. And for lack of a better plan...we went shopping. Malls in NY are just plain insane but fun!
We found out this evening that we will see Dr. B tomorrow around 4PM. He will see us at the hospital. He will probably need to drain the fluid. This is done by inserting a needle into the pouch of fluid and draining. My poor baby is going to be so traumitized. Then if he feels the incision is healed enough, he will remove the staples. If not, he will rewrap and we will have to wait a few more days. We talked about going home and having the staples come out there, but what if something happens there? I would rather be close to TCI just in case.
I have to admit I was having a real hard time finding the silver lining. But God always comes through. Tonight we met a family who's 9 year old daughter has Chiari. She has not had surgery yet. She also has the instability in her head. So there it is...a great reason for being here tomorrow. A chance to learn more about this family, and allow Brooke to make friendships with other Chiarians.
Love and Hugs from us all!