Wednesday, March 03, 2010

We're HOME!!!

Yes that's right we are all home together tonight. How sweet it is. I am completely exhausted! How that can happen in as little as 36 hours I don't know. It actually feels like days.
 
First I have to thank everyone that pitched in & helped out to make this happen all at one time. We couldn't have done it without ya'll. Thank you so very much for everyone's prayers. We couldn't have made it through this quickly without those prayers.
 
The hardest part was actually writing down how many seizures, the length & describing them. Whenever I say how many they have I tend to underestimate. I realized these past two days & one night just how much I underestimate.
 
The got plenty of data on both to know the type of seizures they are having. Hopefully we will have a plan & direction in the next few weeks.
 
Dr. Cheng came in to tell me about Abe's seizures first. Well let me go back. First thing this morning Nancy, NP came in and said boy he had A LOT of seizures.. She said I think we have enough data. When Dr. Cheng came in he demonstrated them, described them & told me all about them. He said you have quite an unusual little boy here. HA!!! Where have I heard that before? He described the background of his brain as being jumbled & cloudy. He said that his seizures are all over the place. That explains why we see so many different looks of one type of seizure.
 
He came in a little later to talk about Michala. He was quite cute talking about her left & right hemisphere. Her seizures come from both sides he said. Then he said and sometimes they even jump across even though she has no corpus callosum. Well then! She is having drop seizures which is what I thought they were. I just weaned her from Banzel because it was making her so irritable. Now I am told this is probably the best medication for these types of seizures.
 
So any way we will have a plan soon. I pray!
 
Abe's CO2 was 34 from yesterday labs. It's supposed to be 20-28. They repeated it today & it was 38. They ended up doing a blood gas after we had been discharged. If it had come back abnormal other than the CO2 being elevated they would have kept him. It was all fine except his CO2. We have to go back in a week to have the blood gas repeated.
 
His CO2 being high triggered some other questions so more test are being done. Some that will take a little bit of time. If it leads us closer to a diagnosis then this was good. However it's just "one more thing". I wasn't ready or prepared for one more thing.
 
I had some what of a melt down last night which was witness by some dear friends. Thankful today they are still dear friends & carried me through that time.
 
Sara shared this scripture with me last night. Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid. John 14:27
 
I have read that scripture so many times before but last night it had new meaning for me. I was so stressed over seizures I see Abe having every day. Not knowing when or if to give rescue meds & feeling like a terrible mom. I read that scripture and a peace came over me. The seizures, the things I have no control over & cannot change are of the world. Taking those away will not give me peace. It will make me feel better I am sure but there is sure to come something else that will become a thorn in my side. My peace HE will always be with me.... 
 
No Matter What Happens no matter what trial I must face I will constantly speak of His glory and grace (Johnson Brothers). I hope this is what the doctors & nurses saw in me. I hope this is what the world sees in me. Not me but HIM!
 
Thanks again for all your prayers!
 
Much love!
Kelli

2 comments:

Kat said...

Praying for your sweet family...and your right, Gods peace stands firm...may peace be on your heart tonight.

GOD'S ALIVE! said...

So glad you are home! Praise GOD for His peace!! Thank you for sharing that verse. Praying for your sweeties right now.