We had our "Care Conference" with the doctors and were able to get a few of our questions answered! While there are still no answers or "best guesses" as to what happened or is happening with Lexi, we were able to develop a game plan for her recovery process. This involves working with neurology to be sure absolutely all possible testing has been done and then also working with GI (gastro-intestinal specialists) to develop a plan for Lexi's feedings. It looks like Lexi's condition will most likely turn into a "wait and see" and "hope for the best." Having said that, Lexi continues to have no interest in sucking, which obviously means she is not taking anything orally. Apparently, she remains "bored" with the entire baby thing! Lexi also has another MRI scheduled for 8am tomorrow morning. This will be her 5th one! We have decided, however, that we do not want Lexi sedated and put on a vent for the procedure since we still do not know the cause of her current cranial nerve problem. We are hoping that she will again cooperate and be able to have the test done!
Specific Prayer Requests:
Thank you to everyone that prayed for our conference today. Jon and I both felt very calm and relaxed during the entire process and felt there was a very good line of communication.
Please pray for Lexi's MRI in the morning. Pray that she can lay still enough for them to complete the test since we do not want her put under more sedation!
Pray for Lexi to develop an interest in sucking again. We are praying for at least some interest in a pacifier!
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2 comments:
Praying for the MRI in the morning, taylor has never had an MRI without sedation but also never had a vent when she did have sedation. I am assuming Lexi has to have one because of her gag/swallowing issues. All they did was taylor was give her enough meds to make her rest.....I will surely pray that she lays still. First thing in the MORNING!!! I WILL BE PRAYING hard...
Glad you will be working with nuero and GI....will they move you to the nuero floor?? DO they put anything on the pacifier or whatever they use for OT? When PJ was born[ he was a preemie] and would fall asleep less than 5 minutes into a feeding and they had us rotate flavors on the nipple to activate the taste buds.
Wow...i always write too much I think but I hope it's inspirational and not annoying...I can get that way :)
I remember the MRI room in there so clearly UGH....I luckily can no longer have or be near an MRI and wish you didn't have to be near one either. Those things are SOOOO loud.....OK I will let you sleep and rest. Hope tomorrow and your weekend goes well.
Kim
Wanted to apologize in advance for any new behaviors that have been introduced to the twins by Ry! Last night the new trick was crushing up their cookies all over the little table with wooden building blocks. THey were cracking up and having a great time! At least it might help with hand/eye......?? Sorry! He's a stinker with them and they think he is hilarious which he then performs to! :)
Glad to hear the meeting was decent - praying they can find the most efficient way to get you home the fastest and that the Lord will lead you to the right Docs and OT's when you get back home!
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