We will see Caden’s cardiologist on the 20th of August. We have many outstanding questions and the list of procedures that Caden needs is increasing. Sherry and I felt that it might be best to just let you read the emails that passed between me and the cardiologist in the past two weeks. That should give you a good idea of what we are facing with Caden. I did a little editing to remove names of doctors etc.
“Since our last communication we have taken Caden to see MUSC orthopedics again. The MRI is still required before the back surgery. Orthopedics and CHOP consider the need for growing rods to be a distant second behind Caden’s heart diagnosis. They said that waiting a year to install rods is okay especially since the scoliosis did not progress at all between the April and June appointments. They think that the rapid progression of the scoliosis over the winter was likely due to a growth spurt. Caden has been experiencing some pain around his g-tube site near a little abscess. We have seen MUSC peds surgery and they want to explore this area by the g-tube site the next time Caden is put under general anesthesia. They are suspicious that the site might have some foreign matter under the skin that is causing Caden this irritation.From and ENT perspective Caden is also in need of a replacement ear tube.
I am sure you are aware that we ended up going through two halter monitors since we last talked to you. It has been nearly a month since we completed the second halter monitor and we have not heard anything back from pediatric cardiology regarding the results. We are also approaching the four month mark since the last echo and I remember that the cardiothorasic surgeon wanted to wait for another look at Caden’s aortic output and development somewhere around the 4-6 month mark from the last echo.
All that said we are interested in getting some of the above procedures/surgeries completed in September if possible. We would like to see if we can get one or more of these things completed in combination with the pacemaker removal sometime during the month of September. This would allow for the MRI to be completed and allow peds surgery a chance to explore the g-tube site. I know this may be a stretch, but replacing the ear tube would be a great before we get too close to cold and flu season. We know that coordinating multiple surgeons etc can be very complicated and wanted to start planning early. We have some very important family events/vacations coming up in October and November and we want to keep those plans intact unless there is an emergency reason to cancel these activities.
We do not have Caden scheduled with you in the near future for an echo and wanted to take this opportunity to fill you in on the status of orthopedics, ENT, and other recent events. Please let us know your recommended course of action given the above information. We look forward to hearing from you soon.”
“I got a verbal report from one of our EP doctors, who looked at Caden’s Holter and his rhythm looked good. There was only one brief pause in the usual normal sinus rhythm without any abnormal escape beats. We need to get together now and decide about timing. I’ll talk to the cardiothorasic surgeon about that and I’ll talk to him about how he feels with other services involved such as ENT and peds surgery.”
We are not completely sure what this will lead to, but we are still praying for the removal of the pacemaker rather than a repair. Thank you for covering us in prayer over this issue. God has shown us so many ways how He is working in our daily lives with Caden’s health and with our finances in particular.
Prayer
I am excited once again to be able to cut and paste some prayer requests from past posts straight into the praise section of the current post! Glory to God!
Praise Reports:
- A clear Halter monitor result (no heart blocks and no weird/wide beats)
- There was enough data collected from the Halter monitor.
- Discernment for the doctors and us.
- Good communications with local orthopedic surgeon
- Positive results from back x-rays during orthopeds visit. No curve progression!
- Strength and peace for Sherry and me
- Godly counsel to be available to help us sort through the medical risks and the associated decisions that need to be made in the coming weeks and months
- Protection for our finances in regards to the appliances. Overtime 🙂
Prayer Requests:
- Whole body healing for Caden, as always
- Continued protection from infections, colds, and all illnesses
- Continued discernment for the doctors and us. That our steps will be directed by the Lord rather than fear.
- Continued strength and peace for Sherry and me
- Protection over all our boys’ emotions (they have already overheard way too much about all this)
Sunday was Josiah’s birthday. That’s right, it has been a whole year and our little guys is growing up fast. You can get a peak at Josiah over on the Land of Ozz. He is standing well and has taken a few steps. He should bust out running after Caden and Riley any day now.