Another Cleft Palate Surgery

This morning I woke up at 4:30 a.m. to get ready to take Nathan to Primary Children's Medical Center to have Dr. Park perform another cleft palate surgery. There was a lot of thought put into Nathan having this operation. All of the doctors in in the craniofacial team said that Nathan needed it done. Not one of them could agree on the timing. Up to this point in Nathan's surgical history, the choice of when was never given. Its always been he needs this and he needs it now! The concern with this operation is that with all of the work we have put into giving Nathan an optimal airway, this could have set us back. Nathan has such a small mouth and jaw in comparison to what he should have. The flap that exists in everyone to close off their nose when they speak is missing in Nathan. He needs that flap! However, he is not and probably never would be a candidate for the operation to help him. So, we improvised... and had to beg Dr. Park to do this for him. Typically children like Nathan do not have this operation until they are 6 or 7. But Nathan is not a typical little boy. He's had several nasal endoscopies this year and did not cry or figit when the camera was stuck down his nose. He is a mature little boy with a lot to say and yet everyone has such a difficult time understanding him. This operation should help immensely. Even more than that - we want to be done for quite some time before Nathan needs anymore operations in his mouth. We are desperate for him to eat through his mouth. We have the potential to be done for a few years till his next open heart surgery. This break could make a significant difference to Nathan! The surgery is done and it went well. The only issue Nathan is having is that when he falls asleep his airway compresses and his oxygen levels dip down to the requirement of needing oxygen. His poor mouth is swollen and he is having a difficult time speaking. But he is in good spirits. He will be staying overnight for observation and Jake is going to stay here with him. This is going to be the start of good things to come!

A Push Forward

I took Nathan to his preschool open house during lunch today. He was so excited to see his teacher at Cherry Creek again. We adore Mrs. Foster and Natalie, her technician. Natalie has been WONDERFUL with Nathan and he loves her so much! I'm excited for the progress that I think will happen at school this year for Nathan. He's having a cleft palate surgery on Thursday. We are a little nervous, but happy to be doing something more for his speech. You wouldn't think that a cleft palate surgery would be a big deal, especially when compared to open heart surgery. I remember Nathan coding in the Intensive Care Unit after his tonsilectomy. This surgery has the potential to go really right or really wrong. But the big push forward really came this afternoon. I sent the necessary documentation to "Our Children's House" in Dallas, TX to request Nathan be seen in a more intensive feeding clinic there. They are comparable to Primary Children's, but offer a more comprehensive feeding therapy. If Nathan is accepted for an evaluation and is seen as a patient whom can be helped, I will be taking off 1-2 months of my life to take Nathan to Texas to teach him how to eat. We have also looked into the Hershey Penn State program. I'm feeling scared - mostly for the what-ifs. I want Nathan to succeed so badly and we have been at this for 4 1/2 years. This is new territory even for us; and a costly one. Our insurance will likely not pay - but Nathan is in desperate need for this care. We'll know in a few days a little more information.