We do not have all of the details, but the new nurse did not show up for tonight. We were told by the nursing agency that she was unhappy. She told the agency that it was hard for her to stay awake due to the low lighting in Caden’s room. She did not indicate clearly to the agency if she planned to show up again. She did not return calls from the agency or from us on Wednesday. We were trying to contact her to see what we could do to make the environment better for her. (i.e., TV, Internet Access, better lighting, more coffee, etc.)
I did not get in bed until about 10:30PM and Sherry got me up a couple of hours ago at 3AM. Caden had a reflux with Sherry just after midnight and then had one with me at about 4:45AM. We will be so glad when he gets the Nissen on June 6th. This surgery will not fix his swallowing problem, but we believe it will mitigate some of the urgent situations that arise from large amounts of fluid collecting in front of his airway in a short amount of time due to the severe reflux. Fluid that collects due to oral secretions builds up much slower and Caden tends to get restless and starts coughing as a signal that he needs suctioning due to his secretions. We hope that we can get back to the point where we can cat nap while he sleeps the we were doing a couple of months ago when he only refluxed a couple times every two days. Caden has refluxed an average of about 4 times per day for over six weeks now. He has reflux 8 times in the past 24 hours.
I found out a couple of days ago that we are likely in for round two with our battle to get the Medicaid Waiver funding. More details to follow on this subject. I did not share this information with Sherry until last night mainly because she has had a rough couple of days with Riley in addition to Caden’s higher than average reflux lately. I try to shield her from the logistics of nursing issues so that she can focus on Caden and Riley. This builds on me form time to time but carrying a little stress from dealing with nursing agencies, insurance, and Medicaid is the least I can do.
Sherry and I had a discussion before I went to bed about whether we are doing the right thing with getting the Nissen. I have come to the conclusion that we have a pretty short list of choices. We can not continue to function like we heave been doing over the past six weeks.
I have come to a much clearer understanding as to why some humans just spontaneously become homeless. Don’t get me wrong, I am not going anywhere, but I do fantasize about running off to Alaska, Africa, or South America for a season. Oh how wonderful it would be to fly the bush for some mom and pop air charter service in Alaska or fly supply planes for a missions team in some third-world country. I would have nothing to worry about but weather and the airworthiness of my airplane and maybe getting shot… I digress.
Caden just coughed and snorted a few times bringing me back into reality. That was his signal for me to clear the building secretions. Man I wish you could see the smile on his face right now. He coughed and gasped for air looking at me with the sadness look imaginable as I approached him with the suction hose. He struggled and screamed as if I was slowly removing one of his toenails while I ran the hose into his nose. Once I was done clearing his airway he looked up with the biggest smile. Sometimes he looks at me as if I am his hero. I guess in a small way for a split second I am. I can not even describe the feeling I get when he looks at me like that.
I know I am unloading on you all today. Sometimes it seems to help to just let it out. I think I need a lunch with one of my good friends David, Kane, or Les. They are all good listeners and full of encouraging ideas. I am over due for a lunch with all of these guys. Or maybe I will make a call to Robin where I do nothing more than scream when she answers the phone. Everyone needs a friend like her. I have been known to do that. I know it sounds crazy, but she offered and it relieves stress.
Please keep us in your prayers. We need relief from the stress and exhaustion. We are grateful for all that you do. Our family and our friends have been great sources of comfort, encouragement, and strength. Keep up the good work.
HO