A short update until tomorrow - as we were admitted to the hospital but luckily my phone has Internet!!
Haven did very well through surgery! She made a couple of phone calls tonight before her next dose of Oxycodone and Tylenol.
She went in to surgery around 10:45 am and we finally got her out around 4pm.
Her surgery was done in two parts. 1st part: major adjustments of both eyes. He found that when she fell asleep both eyes rolled off to the side really far and there was a lot to correct.
When she was coming out of the anesthesia from the 1st round we were able to visit with her. I only went back for a few minutes - Kris went back first and stayed with her for about an hour. I can't tell you how hard it is to see your child with blood-filled tears streaming down her face and what looked like fishing lines coming out of her eyes! It was very very hard to see her. The whites of her eyes are bruised, bloody, and just horrible!
The 2nd round of surgery they put her back under after checking the alignment from the 1st round and then they make final adjustments, remove all of the lines and strings hanging out of her eyes and wait for her to come back out again.
Haven was definitely admitted for the night. Kris and I have spent the past 6 hours wiping bloody tears from her eyes. She still refuses to open them so we have kept wet gauze on them all night. She keeps falling asleep and then waking with sharp pains through her forehead - she is staying on the Oxycodone for the night.
Oncology came in to check on her around 7:30pm - which was a nice surprise. And Nurse Katie called to check up on Haven to make sure she was doing well.
Haven will be transported to the 8th floor around 1am for her Rituximab chemo.
I will update more tomorrow. I have a few photos - although I was yelled at constantly about the flash of the camera! More info tomorrow - good night.
Thank you to everyone around the world that have sent Haven prayers and good thoughts! We truly appreciate everything. Love to all
Learning sustainability for our family and taking care of kids. Becoming a chicken mom in 2020! Our oldest- Haven, 17, was diagnosed with Neuroblastoma Cancer and ROHHAD Syndrome at age 3. We continue to battle these today.
Thursday, March 26, 2009
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ROHHAD in Ireland
I received this story in my email today. It still shocks me that my daughter has ROHHAD. It's a horrible disease that destroys a child&...
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Hi everyone. It's been a long time since I sat and wrote about our daughter's extremely rare disease diagnosis. Literally 15 years a...
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I received this story in my email today. It still shocks me that my daughter has ROHHAD. It's a horrible disease that destroys a child&...
Oh my goodness.. I am sure it looks so terrible the bloody tears. Misty, I pray that she recovers quickly and that all this will be worth the outcome. God bless you all and keep you strong, safe and in His peace.
ReplyDeleteI am thinking of you little Princess! Many hugs your way!
ReplyDelete-Aleah
Misty, I cannot imagine what you're experiencing but may God bless and walk with your family.
ReplyDeleteSending prayers of comfort your way. I hope that Haven heals quickly from her surgery.
ReplyDeleteMist; not sure if you received the first comment if not Gram and I have been very concerned the of surgery. Gram read the email you sent before the surgery; she could not sleep that night thinking about Havey and what you are going through. It good talking to you last night; and actually hearing a voice instead of reading everything. Keep us informed please. Gram talked to your Dad quite some time today.
ReplyDeleteC.
I hope the pain is decreasing for her and that the surgery was helpful. Looking forward to your next blog with better news!
ReplyDeleteMisty I agree with you about our medical system; something really needs to be done about it. A child should not have to die for the parent's to receive help. Uncle Ernie's brother went through all of that until he died; then all the bills started coming in with no regard for the family; just give us the money and move on with your live! It's just not fair!
ReplyDeleteCandy