Caden has had tremendous weight gain . Caden now weighs 12 pounds. Caden’s feedings had been delivered into his tummy over a period of about an hour up until about two weeks ago. Sherry has been working very hard to get Caden’s feedings to where he completes a feeding in approximately thirty minutes. This has him currently getting 110 ML of the formula and mom’s milk mixture via g-tube in thirty minutes out of every three hours. Sherry has been working hard to break Caden of his need for the pacifier to go to sleep. We are very pleased with her success and Caden no longer requires a pacifier to go to sleep. Caden’s physical therapist visited today and was very pleased with Caden’s progress. Caden is gaining strength. He has great head and torso control. He grabs and puts just about everything in his mouth. He has not found his feet yet, but I am sure he will soon. We visited the doctor today with Caden. Caden has had some rough days with reflux since Thursday of last week. These reflux spells are as traumatic as ever. He has been very difficult to suction. Caden is showing no new evidence of being able to swallow. We have still not found any rhyme or reason to what causes the reflux. The doctor believes that Caden may have a virus that is causing him to have thicker secretions and causing us difficulty trying to suction him. We asked the doctor to refer us the pediatric surgeon. We are wanting to gather more facts on the Nissen Fundoplication. This is the procedure that wraps stomach tissue around the lower esophagus to help prevent reflux. We have not decided to proceed with the procedure. We just want to get the facts straight form a person who specializes in this area. We have also contacted CHOP (Children’s Hospital of Philadelphia) to get some guidance. We still do not have appointments arranged with any of the CHOP clinics, but we are hoping to make that trip before we have to make any big decisions regarding the swallowing difficulties and reflux problems that Caden has experienced.
We are still having a nurse monitor Caden between 11pm and 7 am Sunday night through Thursday night. We have a nurse here over the weekend when my travel runs through a weekend. We would like to use the nurses on the weekends now, but we are trying to conserve the days that the insurance will cover. My insurance will cover 60 visits in a contract year. Those 60 visits will run out for us sometime in May at our current rate. We are working with Caden’s doctors to get the required information to Medicaid to see if they will pick up the tab where my insurance drops off. We are not sure what we will do if Medicaid will not pick up the tab. The rate for the nurse is well over $30 per hour.
We consider the nursing care to be a necessity. Sherry and I still split the shift on Friday and Saturday nights and find that plenty of action still takes place in the wee hours of the night. The unpredictability of Caden’s reflux puts him at extreme risk of aspiration if the reflux is not cleared by us or a nurse. In the event he refluxes right after exhaling or coughing, then he has no way to clear his airway before trying to breath in. She suspected that this may have happened today. She went into the restroom for just a couple of minutes, and returned to find Caden with a big bubble expanding and contracting from his nose. He was struggling to breath but could not. Sherry cleared his airway by the suction on him, but was concerned that he may have aspirated some of the fluid. The trip to the doctor today was primarily to have the doctor listen to Caden’s lungs. He sounded okay from what the doctor could tell. He gave us signs to look for that could signal an onset of pneumonia due to aspiration. We have not seen any of these signs.
While the news tonight is mixed, I assure you that we are doing pretty good. Sherry is exhausted, but she remains in good spirits. I give her a chance to get some alone time for the evening or the whole day sometimes on Saturday so that she can go do whatever she wants. My few hours alone with these two boys gives me a good enough feel for what her day must be like when I am working. It takes a special person to endure such a situation everyday. I am truly blessed to have her.
It is now 11:30 PM and he nurse has been here for a while. I finally got Caden’s apnea monitor downloaded to the monitoring service, have drawn up his medications for the next 24 hours,and moved him to his room. Oh yeah, Caden’s Reglan dose was increase by 66% today due to his weight gain. I am now off to bed.
Please keep Caden in your prayers. He has seen some success lately, but still has room for improvement. Sherry needs rest, strength, and encouragement. I was gone on travel to New England for over 10 days over the Easter holiday. She has still not had a break since before my departure on 3/20. I will give her a break this weekend. While I am tempted to ask for you to pray for success in getting Medicaid coverage for the nursing care, I am going to say pray for complete healing of Caden’s swallowing and reflux problems instead. I would rather just skip that red tape process and get to where we no longer even need a nurse at night.
Thanks again for your prayers.
Hank O