Today was a busy day for Miss Haven. She has had a fever for quite a while today. We've been watching her since yesterday since she was running a bit warm and having chills. With the fever Haven received many visits from doctors today. With worry that there could be an infection in the port lines they had to access the other port today to get cultures on both ports. She has also had the diarhea for about 5 days straight now. She can barely make to the end of her meal without spending 20 minutes in the bathroom.
With the bad dehydration from yesterday the doctors decided they would reduce the Acyclovir medication from 3 times a day to 1 time a day. She receives that at midnight now. But with the fevers she has been started on another 2 medications.
She is on antibacterial, antiviral, and antifungal medications. Then she is also taking a medication that is trying to jump start her bone marrow in to making healthy cells. Today she began two new medications to fight the infections.
The bone marrow medication really hurts her bones. Last night we ordered the Dilauded because she was hurting so bad. It mostly affected her shins, ankles, and neck.
One of the new medications for the infection really did her in tonight. We were told it's not an allergic reaction but if it goes in to fast the body sort of freaks out because it is overloaded with antihistimines. She developed what is called "Redman's Symptom". Pretty much she went in to an itching and scratching frenzy. Yelling that her hair was hurting and just digging at her face. Then she turned red from face all the way down around her shoulders and back. This is the Redmans symptom. So she was juiced up with Benadryl. She has to take this medication every 8 hours so on her next dose she will get it at a slower pace.
Tomorrow we should find out the test results from the labs and cultures taken today. I really hope they don't find anything crazy.
She is sleeping right now with a bit of snore. She has had a couple of choking issues and our nurse came in to check on her but all is ok.
I hope she gets some good rest tonight and let's hope for a calm day tomorrow. :)
Love to all
M
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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...
Praying that tomorrow is a better day. Big hugs, Heidi & Junior
ReplyDeleteThis was on one of the message boards I visit, and I thought it was appropriate for so many situations:
ReplyDeleteWhen things go wrong, as they sometimes will,
When the road you're trudging seems all uphill,
When the funds are low and the debts are high,
And you want to smile, but you have to sigh,
When care is pressing you down a bit,
Rest, if you must, but don't you quit.
Life is queer with its twists and turns,
As every one of us sometimes learns,
And many a failure turns about,
When he might have won had he stuck it out;
Don't give up though the pace seems slow--
You may succeed with another blow.
Often the goal is nearer than,
It seems to a faint and faltering man,
Often the struggler has given up,
When he might have captured the victor's cup,
And he learned too late when the night slipped down,
How close he was to the golden crown.
Success is failure turned inside out--
The silver tint of the clouds of doubt,
And you never can tell how close you are,
It may be near when it seems so far,
So stick to the fight when you're hardest hit--
It's when things seem worst that you must not quit.
- Author unknown
Haven and family - as always, you are in my thoughts.