Against all of our best efforts we have found ourselves in the hospital once again. After our short stay on the 29th Carly continued to refuse to eat but fortunately we had the NG tube in place which allowed us to keep up on her diet and fluid needs. She was very fussy during the night of the 30th, keeping us up all night trying to help her feel comfortable. She did pretty well on the 31st, but then become very agitated again on the morning of the 1st and she stayed that way all day and into the 2nd. By 9pm yesterday it was clear that her agitation was too extreme to continue to manage at home so we made our way back to the emergency room and were admitted back to the hospital (although this time to a regular room on the quiet 7th floor instead of the PICU.)
The neurosurgery team believes that the issue may be that Carly is sensitive to small changes in cranial pressure and her current shunt setting is too high for her to tolerate. They turned the shunt down one setting last night with hopes that this would give her the relief she needs. The change may have had a small effect, but Carly continues to be uncomfortable. She had two periods today where she rested for 45-50 consecutive minutes which is a lot more that she has done in the last four days but she still has a way to go. There is a chance that she needs more time to adjust to this current setting, but it is also possible that her shunt needs to be adjusted down one additional setting. We will decide in the next few hours whether or not to change the shunt setting, and either way we are really hoping Carly can get some comfortable rest tonight. Your healing love is much appreciated.
Love, Brad
11 comments:
So hoping that tonight brings some rest for Carly and for mom and dad, and that tomorrow is a better day. Much love to you three.
just lifted up a prayer for Carly - for peace, rest and a resolution to the shunt problem. Prayers for you parents as well.
Hoping they can get the shunt just right so Carly, Mom and Dad can get some much needed and deserved rest. Thinking of you three. Sending FixThatShuntVibes your way. ((HUGS))
I hope that sweet little Carly is doing better today & that you were all able to get at least some rest. Thinking about all of you & sending love and healing thoughts...
I am so sorry to hear about the difficult times you have been going through. We were all hoping things were starting to turn for the better. I am sending healing thoughts directed at Carly and positive energy to you all.
with as much strength, dedication, and positive energy you two are giving to little c, I know this will change for the better. sending tons of healing thoughts your way. :D
lovelovelove
kate
Just thinking of you and planning to call to come see Carly when I read this. Hoping this is the answer to the mystery misery and that Carly will be home soon and playing in her "playroom".
Take care,
Jeri
sorry to hear this. the thought of Carly in discomfort for so long is saddening, it must be incredibly hard for all three of you. It's inspiring, though, that your positive energy and love stays so focused on helping her get through each obstacle and back on her road to recovery... you guys are just such amazing parents and I keep wishing you didn't have to prove it time and again. we are all here with you sending love and prayers to your sweet little girl and to you two.
hugs and hope for shunt resolution and rest,
sheila
hang in there guys! i know this can't be easy, but i know that with your love and the support of everyone involved...restful nights will soon arrive. keeping you and little C in my thoughts!
much love,
robin
Thinking of you and hoping to hear there was some resolution to the shunt setting. Sending prayers for her, and some hope you two can get some rest soon. All our love, Becca and Brian
thinking about you guys and hoping they got the setting right. sending all the love i have to you 3 right now.xo
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