Deep Breath Update (Wednesday Evening)
At the end of the day, Trinity is better now than she was this morning. I would call that a good day. Our baby is breathing on her own this evening and sleeping like, well, a baby.
This is a good step for Trinity, who is still on some seizure medicine but not the kind that keeps her sedated. No seizures all day. That's good for a parent's heart. But there is still a ways to go in the process. The doctors are having a bugger of a time figuring the pieces to the puzzle and how they fit together. We still don't know what was causing the seizures in the first place. Hopefully the results of the metabolic studies will hold a clue.
The infectious disease specialist was here today to start working on her health history. Interesting guy, never really made eye contact. He said an interesting thing, that he new that Trinity was a cute baby when he looked at her MRI. It takes an different kind of mind to be able to see that sort of thing. I am thankful that God made people like him. He can do things that I never could.
What's next? Tomorrow we'll visit with the neurologist Dr. Bettis again. We'll also hopefully see the results of the metabolic studies. Also we'll start looking at another lumbar puncture, AKA spinal tap. They'll want to run more specialized studies than were run in Baker, so another is necessary. I can't say that I am looking forward to it, but I have to keep thinking about the big picture. We really are hoping for a diagnosis, without which we may not be able to prevent another episode like this from happening.
Thank you so much for your prayers, support and attention. We feel your prayers, for me it comes in the form of a great deal of peace. I miss my little girl like crazy, but I know that God will bring our family through this and it will make us stronger. You are all a part of that. You make us stronger. God bless and keep you all.
For those that didn't see this earlier, here's Trin just after getting of the vent:
This is a good step for Trinity, who is still on some seizure medicine but not the kind that keeps her sedated. No seizures all day. That's good for a parent's heart. But there is still a ways to go in the process. The doctors are having a bugger of a time figuring the pieces to the puzzle and how they fit together. We still don't know what was causing the seizures in the first place. Hopefully the results of the metabolic studies will hold a clue.
The infectious disease specialist was here today to start working on her health history. Interesting guy, never really made eye contact. He said an interesting thing, that he new that Trinity was a cute baby when he looked at her MRI. It takes an different kind of mind to be able to see that sort of thing. I am thankful that God made people like him. He can do things that I never could.
What's next? Tomorrow we'll visit with the neurologist Dr. Bettis again. We'll also hopefully see the results of the metabolic studies. Also we'll start looking at another lumbar puncture, AKA spinal tap. They'll want to run more specialized studies than were run in Baker, so another is necessary. I can't say that I am looking forward to it, but I have to keep thinking about the big picture. We really are hoping for a diagnosis, without which we may not be able to prevent another episode like this from happening.
Thank you so much for your prayers, support and attention. We feel your prayers, for me it comes in the form of a great deal of peace. I miss my little girl like crazy, but I know that God will bring our family through this and it will make us stronger. You are all a part of that. You make us stronger. God bless and keep you all.
For those that didn't see this earlier, here's Trin just after getting of the vent:
What a gorgeous little baby. Who but God could make something this precious?
Trinity is so beautiful and I am so glad to hear that there were no seizures today! My thoughts and prayers are with each of you. Please let me know if I can help in any way.
ReplyDeleteGlad Trin had a better day. We're praying hard for you guys. Dr. Bettis is a good guy. We had to take Kade to him when he was only a couple of months old.
ReplyDeleteI have no idea who you and Autumn are...or Trinity but this story is weighing so heavily on my heart. I will continue to remain in prayer for the doctors on the treatment team and the family...and of course baby Trinity. Such a beautiful baby. Such a precious and innocent face. He knows how many hairs are on her head, SURELY He knows what ails her tiny little body!! Prayers that He will grace the treatment team with the necessary knowledge and discoveries!! MANY Prayers for you all!!!
ReplyDeleteLisa Pierce