We have secured appointments with two clinics at the Children’s Hospital of Philadelphia (CHOP). One appointment with the genetics counselor in the 22Q and You center and one with the orthopedics clinic. The orthopedics clinic is the main one we are after for a number of reasons.
The primary reason for the CHOP orthopedics visit is to get a second opinion on the scoliosis diagnosis. The importance of this second opinion is playing into the heart surgery plans more by the day. More on that in a moment.
Caden and I will be flying to Philadelphia early on the morning of the 12th and will have two appointments that day. We will bunk for the night at the Ronald McDonald house if they have room and approve us as guests. If not we will stay in a much more expensive hotel that has been reserved as a backup plan. We will fly home the next day. I considered the train which was a total of two hundred dollars cheaper, but it would have forced two nights in the hotel due to train schedules. The flights are direct Charleston and Philly in both directions.
Heart Update
I received a call from Caden’s cardiologist this week. The BIG aortic valve replacement surgery will not happen just yet. The very first thing out of the cardiologist’s mouth after identifying himself over the phone was to ask me when we were going to CHOP. He explained that he and the surgeon wanted wait on the valve replacement for as much as 4-6 months. The plan is to perform a Ross Procedure on Caden which is a bit more complicated than only replacing the aortic valve. I will try to explain the details, but just in case here is a link to a very good description with graphics. This procedure basically involves switching the pulmonary valve over into the place of the defective aortic valve location and then adding a foreign valve in place of the lower pressure pulmonary valve location.
So what does the heart surgery have to do with orthopedics and scoliosis you might ask? Three letters – MRI. The next move for the scoliosis is to get an MRI which requires that there be no pacemaker in the mix. The Ross procedure on Caden will result in the need for a pacemaker. I cannot explain why, but according to the cardiologist the need for a functional pacing device will increase with the Ross procedure. The removal of the pacemaker via a thorocatomy (the way it was installed) is more risky than if they were going to have Caden’s chest open for valve replacement. So based on our current information we are expected to go from having a malfunctioning pacemaker to removing pacemaker to getting an MRI to inserting growing rods in Caden’s back to having an aortic valve replacement and then back to having a pacemaker.
We and the cardiologist are all hoping that there will be another way to assess the spine without an MRI. If so, then the malfunctioning pacemaker can be left in place throughout the process of dealing with the scoliosis. This would free up the cardiologist and cardiothorasic surgeon to address the aortic valve on their own terms and timing.
Additional Stuff
Added to all this is the need to have an ear tube replaced and a question as to whether or not having his tonsils and adenoids removed might help illnesses. All of this would hopefully help minimize the need for antibiotics. There is concern for Caden building up a immunity to some of these antibiotics that he has been on numerous times in the past year due to sinus and respiratory infections.
I don’t know about you but my head is spinning.
Prayer Requests
Praise Reports:
- Rapid scheduling for CHOP appointments
- Wisdom with the heart guys
- Rest for our family
- Financial blessings from the Bush economic stimulus
Please pray for the following:
- Whole body healing for Caden
- Protection from infections and illness (we have been seeing goobers again)
- Safe travels for Cadan and me
- Appointment to allow a visit with ENT at CHOP on the morning of the 13th (this will require someone else canceling)
- Continued financial blessings
- Comfortable first flight for Caden (i.e., ears and pressure without being able to swallow)
- Smooth dealings with TSA screener (i.e., with suction machine, feeding pump, syringes, water, formula, pacemaker, and braces on Caden’s feet)
- Potty training
- Continued progress with sign language skills
- My current assignment as there are lots of changes going on that affect me directly
Thank you all for keeping up with us and joining us in prayer. Blessings to you and yours!!!