All
About Me
8/7/08
Ok first off yes I know I have been slacking! SORRY! I am going to start a blog on our family SOON and I will simply post here when I update I think, not sure yet. We went to the pediatrician yesterday. Sean's MicKey site is infected. He is on an oral and topical antibiotic plus they gave me a barrier cream to prevent the spreading of the infection. We are hoping it doesn't spread, if it does it can easily infect his shunt which means we'll have to do TWO more surgeries plus a minimum 30 day hospital stay. NOT GOOD! So pray that this heals nicely.
6/15/08
Well we are home. Been here since last Monday. The surgery went amazingly. It turned out that Sean DID NOT have mal-rotation which is GREAT because it can pose life long issues... Sean had the Nissen Fundoplication done and the feeding tube placed. Surgery went faster than expected and Sean came home early. He is recovering very well. The incision on his tummy looks great as does the place of his feeding tube. He's gained one pound already and seems much more content. We have a follow up on June 23rd. Many of you have been asking about Sean's diagnosis and what that means. In short its not good. His brain isn't how it should be and didn't form properly. Children with Holoprosencephaly usually are stillborn or die soon after. The severity of it that Sean has leaves him with a poor prognosis. Most children with the form Sean has die before age 5. Your continued thoughts, prayers and support are greatly appreciated. I keep you updated as I can..
6/6/08
Sean is currently in the hospital. We arrived here at Tulsa to be admitted to Children's Hospital at Saint Francis for a feeding tube placement since he decided he wasn't wanting to eat anymore. We've gotten all new doctors here and the outcome has been very reassuring that the doctors KNOW what they are doing as opposed to the "other" place we've been going. Sean had tests ran and we found out a few new things including a NEW diagnosis for his brain anomalies! Sean was found to have mal-rotation of the intestines. He'll undergo surgery today for this as well as have the feeding tube placed. He'll have an apendectomy and some correction to the intestines location. The surgery is estimated to take around 5 hours. Sean is fairly weak and needs the surgery to go well and as quickly as possible in hopes of a nice recovery. Sean's new diagnosis is holoprosencephaly which is a condition I was truly hoping he didn't have however the doctors here are very certain, in fact positive, that this is the condition he has and he is officially diagnosed with. This condition has no cure and may worsen with time. It often contributes to many issues as well. Read about it by clicking HERE. Thoughts and prayers for the surgeon to have graceful and accurate hands as well as all others involved and for Sean to have a very speedy recovery are greatly appreciated! This is considered a fairly "major" surgery especially with Sean in the condition he's in so maybe pray that Mommy has some patience and strength to cope with it all as well! If you are interested in helping with the cost of living at the hospital for us, (Myself and 2 of Sean's siblings are here with him) please see the "Help Support Me" section of the site. :)
Mom is working on writing this all out. When she is finished, it will tell you all about me. My birth, my surgeries, my happy birthdays and everything! Keep checking back. It will be here soon!
|
