Caden is doing pretty well. He has had a significant amount of reflux over the past couple of days. This is not so different from other times except that Caden went 3 days without any reflux at all! We’ve never seen the reflux disappear for so long and at a time when we were increasing his food and suctioning him more than ever. When the reflux came back, it came with a vengeance though. We have backed down on his feeding to try and help keep down what he does get. Caden also continues to have diarrhea. We got some results back from the endocrinologist that is resulting in a formula change. His formula has been a 50/50 mixture of Similac Alimentum and mom’s milk. The Alimentum contains about 4 times the level of phosphorus that Caden should be getting. His blood and urine tests from last week confirmed Caden having a high phosphorus level which has resulted in some calcium issues (nothing serious now, just would be in the long term). We are in the process of changing his formula to Similac 60/40, a special order formula for infants with hypocalcemia (body not producing enough calcium). Hopefully this formula change will stop his diarrhea and allow for better weight gain too.
The great news is that Caden has been approved for Medicaid this week (since approval is based on his income). This will cover the rest of the hospital bills, doctor and specialist co-pays, and all prescription co-pays either previous or current ones. This is such a blessing and stress reliever because each thing adds up. Other services we will be starting soon are speech therapy and a nutritionist. Speech works on feeding issues and oral stimulation to prevent adversions since he is fed through a G tube. I am most excited to receive help from a nutritionist. She will help us figure out the amount of calories Caden needs to gain weight and how to work on catching him up little by little. Who knew there’s a mathematical formula to calculating this?! We are also working on getting a Medicaid Waiver through Department of Disabilities and Special Needs (DDSN). This waiver will extend the Medicaid benefits mentioned earlier to possibly include nursing care. We have about 40 of the 60 visits our insurance provides left. These 60 visits go quickly because we use 5 visits a week and more when Hank travels over a weekend. Please join us in praying that God will provide a quick approval and a short “wait” on the list. Philippians 4:19 says “And my God will meet all your needs according to his glorious riches in Christ Jesus.”
Amen.
Hank and Sherry