My mom saved me today with her laptop and the hospital has wireless. So much has happen.
Yesterday brought shocking and disturbing details on what lies behind Wes beautiful, big, blue eyes. For some time now I have been trying to get answers about how Wes’ Cleft, Wide Set Eyes, and vision issues were related. Doctors have always commented on these issues. He has seen two Craniofacial Teams and two Ophthalmologists. No one except his Pediatrician and a local Ophthalmologist have ever searched for answers. All of these specialist and all I have ever had was a feeling that there was more than what we knew. You can not get treatment on a mother’s feeling. For over 3 weeks now Wes has been struggling throughout the night to breathe. He has now been in the hospital since Wed to monitor his oxygen level in the PICU. His local ENT has been concerned that he has Obstructive Sleep Apnea. The first night both his oxygen level and heart rate dropped numerous times. Initially she was solely concerned that his collapsed nostril was causing the sleep apnea, because if I hold his mouth open as he sleeps he breathes fairly easily. Inorder for Wes to come home we have discussed a Trach for next week. Yesterday the ENT scheduled an CT Scan to make sure there was no other reason for Wes obstruction. I honestly did not expect this scan to give us any new information, as his Pediatrician ordered a CT Scan of his head around 2 months old. This scan showed possible reasoning behind Wes’ breathing difficulties and all the concerns that have been pointed out, but never addressed. Wes has Encephalocele. His brain or the lining of his brain is dropping between his eyes. We do not know any specifics and will not get any more details until Monday after his MRI and a referral to a Neurosurgeon.
This week will bring many difficult decision that must be addressed about an issue that I have little knowledge about. I do know this is very rare and very delicate. Now I must search for the BEST Neurosurgeon for Wes. I don’t even know where to start. Right now we are in our “local” hospital in Tallahassee, FL.(2 hours from home) The irony of this is that when I discovered Wes cleft one doctor mentioned a midline defect and in my search I found the story of a little girl whose mother who searched for answers for years and did not find the answer until she had a MRI, she has Encephalocele. I have been coresponding with her via email since Wes was about 2 months old. Her story can give you an idea of what this is www.widesmiles.org/syndrome/encephaloceles/index.html (reading Rebecca's story has given me a sense of peace)
After the ENT came in the room to give me the result, some sweet young boys came to Wes room to play him a song. He was sleeping, so they gave him a gift and a prayer. These young boysgave up their Saturday to cheer up these children in the hospital, they did not Wes or his story, but said the prefect prayer.
I am grateful that I can look at that little live wire bouncing around in his bed or in my lap and know that for now I can carry all of his fears and worries.
I will pray that Wes' MRI will show that his condition is stable and there is no need for surgery or treatment and he will just be followed. If not I will pray that we find the best doctor for my precious baby.