It is confirmed that Caden will have his surgery on Monday June 6th. He will only be getting the Nissen Fundoplication to treat the excessive reflux that he has been experiencing since the end of March. Sherry took Caden to see a hand surgeon on Monday to see if Caden’s finger could be repaired while under anesthesia on June 6th. The hand surgeon told Sherry that Caden’s hand should not be operated on until it has completed most of its growth which is at approximately 8 years of age. If it is done now it could stunt the growth of that finger.
I talked to CHoP (Children’s Hospital of Philadelphia) this week. We are not on the schedule yet, but it looks like we will get Caden seen sometime after the middle of September. I asked for their experience on hand surgeries with other DiGeorge kids and CHoP agrees that the child should be at least about seven years of age in most cases. CHoP has a 22Q genetics clinic that specializes in DiGeorge and VCFS. We have been told by Caden’s local GI and ENT doctors that Caden is the most complex DiGeorge case they have seen in their specialty areas at MUSC given his swallowing problems in combination with his excessive reflux.
That is about it for now. I have received several email responses to my last posting about the new nurse. She was not able to work Sunday night due to illness. Sherry and I covered Sunday night. The new nurse worked her first night last night and seemed to like working with Caden. We are pleased with her and we hope she reports the same feelings about us to her company. We are looking forward to having a regular nurse again.
There’s no new news on the Medicaid Waiver situation. They have not completed the level of care assessment, but we did not expect that to be completed until later this week anyway. I will keep you posted on that too.
Thanks for your thoughts and prayers. God hears and answers.
Don’t forget to check out the video that was created by Eric Ramsey shown in the previous posting. There are also some new pictures today.