We had a helpful visit with the nurse practioner in the neurologist's office yesterday. We agreed that it appears quite clear from all Rhonda's symptoms that she probably has Chronic Inflammatory Demyelinating Polyradiculoneuropathy (CIDP) which is the chronic version of Guillain-Barré. In addition, in light of her deteriorating condition recently, the nurse practioner ordered four more treatments of intravenous immune globulin (IVIG). Rhonda will have those over the next four days In addition, it is likely that she will need one each month to help control the symptoms. The prognosis for CIDP patients, similar to GB patients, varies. Of course, we're hoping and praying for a full recovery.
Currently, Rhonda continues to experience back pain from the blood patch that was needed to address the problems caused by the spinal tap. In addition, her CIDP symptoms have worsened so that she can no longer walk as much around the house. Fortunately, she does not have the balance problems that she had right out of getting out of the hospital, so she can still take care of her basic needs without a walker. She also continues to have headaches and vision problems. The vision problems are actually some of the most difficult for Rhonda since she cannot read. Even helping with the kids homework, which is a big help, becomes more difficult. Of course, we're hoping that the IVIG treatments help further her progress next week.
Unfortuantely, while I was able to leave Rhonda with one or both of the kids for short times, I currently cannot do that. By God's providence and grace, my parents have been here for the past two and a half weeks. They've been a wonderful help and support. However, they will be leaving this Monday morning.
Folks have asked how they can help. Right now, we will be looking for someone to come and stay at our house with Rhonda and Cody (and later Bennett when he gets home from school) from Tuesday 12:30 to 5:30 and Thursday 2:30 to 5:30. In addition, this Monday, we'll need someone from 2:30 to 5:00. At the other times, Cody and Bennett have school or I can write/work from home.
In addition, if anyone has books on tape that you think Rhonda might like, I'm sure Rhonda would appreciate them (she likes Christian fiction or nonfiction, but I'm sure she's open to other options).
As always, we are so thankful for the support family and friends have given us. Thanks so much for all the meals, rides, gifts, prayers, etc. I can't imagine what it would be like without you.
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3 comments:
Rhonda and Perry:
We're praying for you guys, and thinking of you often. Hang in there. Perry, be sure to let me know if there is anything else that I can do at the office to help you.
One day at a time, Rhonda!
Wes and Dana
Rhonda,
I am keeping you in my daily prayers. Hang in there!
Mindy Pierce
I'm sorry to hear that the GBS has advanced. CIPD was the turning point for my recovery from GBS, and it took nine months. I was advised by my neuroligist that it had to get worse before it could get better...I'm so glad to see that she's going to receive more IVIG. I had a total of 15 before it was all over with, and with each one I felt stronger. I pray this is Rhonda's turning point from this horrible illness.
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