RESTING AND WAITING ARE PAYING OFF
The roller coaster for John hit a more even spot on Thursday. Blood pressures and oxygen levels evened out within acceptable levels. He remained in bed and slept a lot, but was able to participate in the very low level PT and OT in his bed - mostly stretching and bending. The neurologist came in to consult with our primary doctor. Their general conclusion is that he is generally stronger than when he left the ICU despite all the setbacks, many of which "fit" the Guillain-Barre Syndrome. They do observe slight improvement in a few spots of muscle tone. The decision was made to "stay the course" and watch closely rather than begin another round of IVIG treatments. He ran low-grade fevers off and on, so they lab tested everything looking for infection - except his leg wounds which continue to heal marvelously and cause virtually no pain (only during dressing changes every 2 days). Right now he is no longer complaining of "phantom" leg pain.
He also spent almost 2 hours sitting in his special chair again - the first time since Nov. 17. Surprisingly, John did not want to sit up and was quite anxious - probably a result of the over-extension of the previous weekend which caused such distress. He continues on the ventilator and it will probably be early next week before any attempt is made to begin weaning him off again. John had been switched to a different nutritional food through his tube and is tolerating that very well and getting stronger. This was a day with no setbacks.
When I arrived Friday morning I learned John did have pneumonia again, so he is now back on two IV antibiotics and increased suctioning which should take care of it. But the bright spot was that John was more alert and engaged in "conversation" with me. This means he moves his tongue and eyes vigorously and I try to interpret! Also, he wanted the TV news turned on and his glasses! This is the first time since surgery in Chandler and was exciting - it lasted about 8 minutes but made my morning! Now it is not unusual to see John trying to move his hands and fingers and wiggling his foot as well as turning his head. It is so exciting! He got lots of rest today and did not sit in the chair, but it felt like a good day.
As for me, I really appreciate the notes of encouragement about my own well-being that I receive. And I continue to enjoy reading your notes to John. I talk and/or text with all the children everyday. A friend took me to lunch on Thursday and another on Friday. These "outings" from the hospital room and the conversation were such a help. Dee Ann and Tom brought my parents to see John and we went out to dinner on Thursday. As many of you have mentioned, this is a very long and lonely road for me, but I try to focus on this day and not the immediate unknown future. I try to eat regular meals and sleeping at night has not been a problem. When I come home sometime between 9-10pm, I putter a bit with the mail and then go to bed - so exhausted that I fall asleep immediately. God has been good in providing the peace of mind I need to sleep. I know that John is going to beat this GBS monster. The excellent medical care, your prayers, God's faithfulness, and John's inner strength will make this happen.
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