I am not sure whether having advance notice of Billy Ray’s surgery this time is a blessing or a curse (smile). He has been in the hospital three times since July 2005 and all have been basically emergencies. You grab what you can and try to explain to my husband what he needs to bring to the hospital.
This time we have over a month’s notice. I am trying to be really organized about it getting his things ready and getting things done at home that end up being abandoned when we have the short notice things. However, it actually seems almost more stressful having this month to worry about the risks, plan for the post-operative care.
Billy Ray is having the Nissen procedure for his advanced GERD (acid reflex). It sounds so scary to me that they wrap part of his stomach around his esophagus to strength it. There are risks for everyone but Billy Ray’s general issues complicate them. I am probably most concerned about getting him off the ventilator after what happened last time. The risks worry me but we cannot just do nothing either. He aspirates food and chokes even when he isn’t eating because the GERD washes things back up when he is sleeping or just going on with his activities. He has tried multiple meds such as the purple pill (Nexum) and others for over a year and nothing has stopped his pain or choking.
The support in our church community is amazing. For example, Bruce (pictured here with Billy Ray) is taking a day off work to be there for Billy Ray during surgery. I am so touched by that. Also the “cookie lady” (Donna who makes the high fiber cookies for Billy Ray because he will eat them better when someone else makes them) and her husband plan to be there. Person after person has let me know that if there is anything at all we just have to ask. Maybe knowing in advance is a good thing after all. I think it also shows the benefit of becoming a part of a community no matter how difficult it is.
I am making him a new album to take with him with lots of his friends and activities in it. I have been reading him Curious George Goes to the Hospital and writing a personalized picture story to co-orindate with that so he will be clear on what to expect.
I probably will actually have more time to blog when he is in the hospital than I have had lately. I have some things from the conference with Dr. David Pitonyak I have been wanting to share with you but haven’t had a chance. I can access the computer in the family room at the hospital if he is sleeping. I will try to stay in touch.
Until next time,
Peggy Lou Morgan
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Lighthouse Parents Blog