I came to the realization a couple of days ago, after talking with the NP at Gavin's neurologist office, that I've been kidding myself. I've held such hope for Gavin's future! I still hold onto hope, but it's not so high anymore. I was told that the EEG showed that he was having less seizures, but that there was still significant swelling on his brain. I was also told that the seizures and delay in Gavin all stem from the "injury" to Gavin's brain back in April when he became severely dehydrated. I was also told this would be a life-long struggle, with at least a couple of seizure meds needed to be taken. This is the good outcome. If they can't control Gavin's seizures with an anti-seizure med, the next step might be to give him steroid injections. We could handle this, except that the price of this treatment is VERY high! Some of you may have read a story in the G.R. press about a month ago about a child that has been using this treatment. At one time the cost of this was around $2500 a month. Now it costs $25,000 a month! Ridiculous!!! This might not even be needed for Gavin, but just the thought of it scares me!
I have been crying a lot over the last couple of days. Coming to this realization and just coming to terms with the last year has made me very emotional! When I think back to all that Gavin has been through! It breaks my heart! I've also been feeling guilty that I let the hospital do some of this to Gavin! I feel I should have been more authoritative with them and not allowed them to give Gavin such high doses of such a powerful dieuretic! I told them that I thought it was too much and I told them that I thought he was dehydrated, but I should have yelled and stomped my feet until they listened to me! Instead I trusted them and their knowledge. I know that I can't beat myself up for this, but it's hard not to. I also know that there is a reason for everything and that God has a plan for Gavin. Sweet, precious Gavin! I called to talk to someone at the patient relations department again concerning what happened back in April. I told them that I needed concrete evidence that something was done and that this won't happen again to someone else! I even offered to talk with incoming residents, though I'm deathly afraid of speaking in public, about listening to patients and their family members. I feel listening, communicating and really knowing your patient would prevent things like this from happening. Who knows what will come of this, but I know that I need to be proactive about this to get over this guilty feeling and to make some sense of why it happened.
Another thing I've been thinking about is how much responsibility I have with Gavin. I know that God holds Gavin in His mighty hands, but essentially I hold Gavin's life in mine too! I have to read Gavin daily and know when to call about something and I need to keep after the doctors to make sure they are aware of things. He has so many meds and doctors! It's hard to make sure all of them are working together. Please pray for me that I can keep a clear mind and not worry about this responsibility. Please pray for our other children too. I want them to feel like they are well taken care of and loved too! Please continue to pray that Gavin's seizures will be under control and that the swelling in his brain goes down.
Thanks for your continued prayers and support! Thanks also to those of you who have generously donated to the Down syndrome association! Their assistance to families is greatly needed!
Also, I wanted to let you know that the car seat problem has been cleared up for now. When Gavin grows bigger I may need more ideas, but I REALLY appreciate everyone's help!
Have great weekend! We plan on it.....Someone we know is turning one year old!
Love, Alicia and Family