So we got up at 5am ad drove to Pensacola for Chris and Nik's neurology appointments. Nik is now on something to stabilize his moods. Nik has brain damage on the right side and since they used foreceps during his crash c section they feel that is what it is from since nothing of the such runs in our families. Every 6 seconds he has seizure activity. He has severe headaches and seizures and all of this going on in his little brain all at once really causes issues for him. So he gets moody and it is rough on him. I am thankful they have decided to try something to help him. It really hurts us not to be able to make him feel better. Everything else is going great with Nik. He is doing well with schooling and is so smart! Now we are happy to be starting the new meds and see how it helps him through the day.
Then Chris' doctor came in and told us that Chris has a rare metabolic disorder that had a bad prognosis. He reordered all the blood work and left the room. I tried my hardest to not breakdown. I know what the kreb cycle is and how it works from my pre med classes I was in a while back. I knew that if could not get this under control his life span would be shortened by a lot. Well we go to leave and the doctor calls us back in. By this point I am a wreck inside. With everything from Octavia's birth I'm already screwed in my head. This just made my brain totally fart and shut down. Well we go in to see him again ad he asks for the blood work order. He takes it back and begins to apologize to us for the mistake. They just started a new record keeping program and some of the charts got combined and/or messed up. I started to tear up from relief. I really thought I was going to choke him for scaring me like that! But I can't blame him completely. So, we are about to leave and Junior looks at Chri's prescription papers and they have some other kid's name on them. Some little 2 year old. Then it hit us, that is the kid whose chart got mixed in with Chris'. Now all day all I've been able to do is feel so bad for this little child and his family who will be getting the news their child has a severe metabolicdisease and his little life that has just begun might not be very long. But I am glad Chris is okay. We know he has some risidual damage from having meningitis and we are taking care of him.
Overall it was a great appointment. We don't have to go back til mid January.
Well I am off to feed the booby monster. She has been asleep since almost 3pm and it is now a quarter to 7 and my boobs are gonna explode lol
more to come...
No comments:
Post a Comment