It has been a busy week for Caden, and us. We received some BIG news on the nursing situation. Caden has seen a doctor every day this week for scheduled appointments. He had a test run, saw the ENT (Ear, Nose, and Throat) doctor, and had his six month well visit at the pediatrician.
He got a test run on Monday to check the motility of his esophagus. They inserted a tube through his nose until it got just past the top sphincter of his esophagus. They injected barium while watching it on the xray machine. This test was done to ensure the operation of the esophagus from the restricted area down to the stomach. This is a part of Caden’s digestive system that has not really been used yet since he gets fed through a G-tube and does not swallow. They wanted to ensure the operation of this area of his anatomy before moving forward with the reflux surgery treatment called a Nissen Fundoplication (Wrap). This is a surgical procedure used to treat excessive acid reflux problems in adults and children. The surgeon would take part of the upper stomach and “wrap” it around the lower esophagus to tighten it and help keep the excess reflux from leaving the stomach and entering the esophagus.
Tuesday Caden saw the ENT for a normal follow up appointment. They still want to discuss botox injections in the muscles of the upper sphincter of the esophogus, but do not want to try this until after the reflux problem has been corrected (Nissen).
Wednesday Caden saw his pediatrician. The main things that were discussed had to do with trying to get the Nissen procedure scheduled. This will be an inpatient surgery. We are trying to coordinate the surgery with a hand surgeon so that Caden’s little finger on his left hand can be repaired during this time under anesthesia. If you have not noticed this finger, it has a contracture (joint frozen at 90%). It is obvious in some pictures. We want to get this fixed before he starts crawling.
On the nursing front, we have been notified that Caden was awarded a Medicaid Waiver slot. Yeah!!! I receive a call from the governor’s office as well as from Caden’s Early Interventionist this week with the news. In regards to staffing concerns, Sherry is meeting two new nurses later this week that are being interviewed by the nursing agencies in response to recent newspaper ads. As far as getting the waiver slot, that basically means that we have to go through some more paperwork to get Caden evaluated for level of care. The Medicaid folks will determine exactly how much of and what type of nursing care Caden needs before final approval of the funding. We saw a similar process with the insurance company and they also do follow up evaluations to make sure care is still justified. We expect to have final approval by the end of next week. The timing is perfect since the insurance coverage will on pay for five or six more visits by the nurses. We have only had a nurse one day this week. Obviously we did not have a nurse tonight since I am writing this at 3:20 AM.
We believe that prayers are being answered here. We continue to receive emails and phone calls from people who are praying for Caden and our family on a daily basis. God works in mysterious ways. Some people may disagree with me, but I believe God uses current day medicine to deliver miracles. The knowledge and skills to perform open-heart surgery on an organ the size of a walnut is almost unimaginable. Being able to perform things like the Nissen procedure is remarkable. I also believe that God puts certain people in your lives at the right times for you to be able to get through tough times easier. I don’t know the governor, but I know someone who does. Sherry could not get through her days without friends like those ladies who took her out to dinner Monday night. Thanks a bunch Sally for organizing that outing. We have an awesome support system though our family and church. The past six to seven months has taught me so much and grown relationships with family and friends to new levels that might have never been reached otherwise. I have been fortunate enough to work for people who are understanding and compassionate about our family’s circumstances. I thank you and I thank God for you.
Blessing to you all,
Hank Osborne