We finally met with the neurologist. After all is said and done, we’re not really sure we ever want to know if there is another EEG test. It creates too much anxiety and from what we can tell is not exactly an exact measurement of what we need. I’m sure much more educated people on the matter would disagree with me, but we have made peace with the unknown at this point.
Her reading came back improved. We were able to get a printout of both last week’s EEG and this week’s, so we have more information to go on. Last week she had something called burst suppression. This is exactly what is sounds like. She has moments of bursts (think of the readings during an earthquake) and moments of suppressed brain activity, where the waves are lower than normal. Her measurements were 10-15 seconds of suppression (where there wasn’t much happening) and 1-6 seconds of bursts (where a lot was happening).
This week the neurologist said was not burst suppression. She had still 1-3 seconds of bursts and this time 3-5 seconds of “relative” suppression. This is improvement in two ways. First of all, the intervals of suppression are lower. Secondly, the suppression is relative, so we think that means the waves were stronger.
The neurologist still said he’s optimistic (he was a different doctor this time) which we are content with leaving it at that for the time being. The biggest indicators are going to be what she is telling us and so far she is telling us that she is tough and reactive. Other than that, ignorance is bliss.
Praise God for answered prayer thus far and for ignorant bliss! He is surely looking over Karsie and will continue to heal her little mind and body.
ReplyDeleteKevin & Michelle, congratulations on your Baby Karsie. She is in my thoughts and daily prayers. God has blessed her with perfect parents as He always does His Special Ones. Thank you both for allowing us to share in your journey as it unfolds. My heart swells with emotion as I read each update and I'm encouraged with the strength expressed by her parents and flowing through her.
ReplyDeleteYou will continue to be in my daily prayers. Treba Sinclare Row Hts Nazarene
Yeah for good news!! Thanks for letting us know what the neurologist said; I've been thinking about you guys all day. Continued prayers for all of you!
ReplyDeleteLove,
Lisa and Clay
Well done on doing her temp and diaper changes!
ReplyDeleteThis is routine, all parents are expected to do routine care for their babies.
I am so happy she is stable enough, some of her care is being handed back to you. It is a big thing y'know!
When she gets to eat, you will be doing some of the feedings too. If she needs medications, you will learn how to give them.
She is YOUR baby. You get to parent her as much as possible, that is the plan.
However, you also mentioned that you could use a break.
You ARE permitted to take breaks.
It is entirely up to you, but as you face months of Karise being in the hospital, which becomes incredibly mentally & physically exhausting - you do get to take days off.
You will want to be with her as much as possible, yes.
You will also feel overwhelmed and exhausted and want to spend the whole day in bed. Or take a day off to do...whatever you want to do.
Michelle will have days when she has to see her own doctor for follow up on her own recovery.
God is good, and has sent you a team of professionals and a loving family to help you.
If you need a break, there are others there to step in and take over for you, for a few hours, or for a day, or however long you need.
Karsie needs intact, healthy parents to take care of her. It is your responsibility to remains as healthy and sane as possible, for her.
It might be you will be happier and healthier of you never miss a day. But that would be the exception to the rule.
If you need a day or so here or there, that would be the norm.
Just know that you are permitted a little time out, to recover from the enormous stress you are going through. Say when you need it, and no-one will think it odd or strange.
Just put that in your files for future use, okay?
Time out for YOU to heal, is absolutely FINE!
You know my opinions re her EEG.....you will hear the worst case scenarios, yet please think the best case scenarios. Karsie is blessed with the best possible indicators of a good outcome. A loving, involved family. And a resiliant, baby brain.
You are all in crisis, this is a crisis for sure.
Thankfully, God sends so many helpers in a crisis.
I am the one who tells you to eat, sleep, rest & heal yourselves! Other people God sent you, are there to allow for that. God does allow you to lift up your feet and be carried along when you are too tired to walk!
You recieve so many uplifting messages of prayer and love!
I send you boring, practical messages, but someone has to.
If you need to take a break anywhere along the road, tell people, and take a break. It is normal and expected and in everyone's best interests.
Once Karsie is home there are pretty much, no breaks! For the next 18 years-ish.
I pray you enough sleep, and respite from the stress, and encouraging news, and the joy of Karsie's first smile.
There will be a lot of diapers to change meanwhile.....you are doing well there!
Much love and encouragement and hope!
Aunty Jen.
"Trust in the Lord with all your heart...lean not on your own understanding...he will direct your paths." (Tricia's version) This came to me after read the above entry. Hoping you find comport and encouragement in it. love, tricia
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