Sorry about the late update on Will's g-tube feedings. Will has a mic key button right above his belly button on the left side of his stomach. He has tolerated his feedings pretty well. He is almost up to his goal of 1100 calories a day. His energy level has even increased a bit! We have a backpack for 'feedings on the go' but we haven't used it yet. About 4 days post surgery we had a trip to the ER.. As I was putting Will down for his nap the tubing got caught on the IV pole and sure enough the entire mic key button and balloon came out. I was terrified! The surgery team in the ER put it back in. After a quick X-ray we were sent on our way. Will is sensitive around the opening of the button. I hope that heals quickly. Thank you all for keeping Will in your prayers. We really appreciate all the support we have received in the past couple of months. May God bless you all.
Saturday, June 14, 2014
Will's feeding tube surgery was this past Thursday. The surgery went well.. Will was a trooper! The surgery took about an hour. Will was sent to the PICU unit for extra care after surgery. There were only 2 other children in the unit, so Will got extra special care! He stayed in the PICU overnight, on Friday afternoon he was transferred to the acute care unit and spent one more night in the hospital. He is still very sore, but seems to be in good spirits. We have a pediatric home health nurse that will help us out getting comfortable with his G-tube feedings. Will's caloric intake will be about 1100 calories… we should see a big change in his weight and he may even grow a few inches! Thank you all for your prayers!
Will showing his tummy before surgery.
Will resting after surgery. He is puffy from all of the IV fluids before, during and after surgery.
Wednesday, June 4, 2014
Will's PEG surgery is scheduled for next Thursday. He has been on a medical grade food supplement for about 5 days and has gained a half pound! I am so proud of him. His solid food intake is basically, well, limited. He may have one or two goldfish crackers or half a pack of fruit snacks in a day. It's going to be difficult to see him with the feeding tube.. it will be a harsh reminder of this terrible disease. If it can help him though become stronger then we are all for it. My poor sweet boy. My mom and sister will be here to help. They are my support system. Without them I am not sure what I would do.
We met with the occupational therapist yesterday. She gave Will a series of tests to check his developmental skills. I am happy to say that he is above average on most skills. However, she is very concerned about his hypotonic and weak state. His hands and upper body were trembling. I think it was partly because he was nervous. He still can't properly throw or kick a ball. He just doesn't have the strength. He had fun though trying! We meet with the physical therapist next week. He is such a happy boy and I am so happy to be his momma! I love him with all my heart and more.
Will and Lauren (3 months)