Our visit with Caden’s cardiologist today was bizarre in some ways. We sort of had ourselves built up for what we thought we were going to hear and BAM! And then before it is all over with the cardiologist says they will be putting Caden on the schedule for pacemaker removal AND the major left heat output repair (aortic valve repair/replacement). They told us to expect the surgery date to be in about three weeks.
I will run through the sequence of events to help you understand why the day was so bizarre for us.
What we expected to hear the cardiologist to say was that the pacemaker could come out for good. And he did say that as expected so that was not a surprise. The initial surprising part of the day was when he told us they wanted to move forward with scheduling the pacemaker removal in September without even doing an echo cardiogram today to see how the left heart output (aortic valve) was doing. When we questioned the reason for not having an echo today they said they would just do an echo on the pre-op day prior to the pacemaker removal. Sherry and I both were confused because our last visit with Caden’s cardiologist had us believing we would face surgery within a couple of months. Instead the cardio-thorasic surgeon had shot down the short term surgery plan to repair/replace the aortic valve and wanted to have another look at Caden’s left heart output again in 4-6 months. Our appointment today is at the 4 month mark. The finding earlier this year showed the left ventricle wall was thickening due to the amount of extra work it was having to do to get blood past the aortic valve area. The thickening is called hypertrophy (spelling?). This is a danger because the thickening of the chamber wall can become so servere in a patient that the heart muscle can begin to take over the capacity of the ventricle to the point that it results in heart failure.
So, at today’s appointment, after this intial plan of pacemaker removal Sherry and I talked through all the issues we were facing with the cardiologist. We explained that we really have no one to help us sort through the priorities. We are Caden’s care coordinators and patient advocates and we really needed their help in understanding things. Here were the things we brought up that needed to be considered:
- The orthopedics team can wait up to a year for back surgery to allow for all heart repair and healing. If the left heart issues drag out any longer than a year then we will want to look at options for going forward with the back surgery before the aortic repair is completed.
- An MRI is needed before a back surgery.
- The halter monitor supports the permanent removal of the pacemaker.
- The only reason to remove the pacemaker is to get an MRI at some time prior to back surgery. The pacemaker is broke and there is no other driving factor to remove/repair it.
- Caden should not be put under anesthesia any more than necessary.
- We need an ear tube replaced.
- We need peds general surgery to explore the area under the abscess next to Caden’s g-tube site. Caden has been experiencing pain in that area.
- There is a risk associated with removing the pacemaker. The nerve that controls the diaphram (breathing) is in close proximity to the pacemaker led.
Now considering all of the above items we were sitting with some big questions today.
- What if the next echo says the aortic valve needs to be repaired within the next six months or so? Answer: It would certainly be preferable to do only one heart surgery to get the pacemaker out and repair the left heart output if possible.
- Is it safer to try and remove the pacemaker led during a valve repair which requires a full open chest surgery as opposed to doing a thoracotamy? Answer: There would still be a risk of diaphram damage, but more room to work is not a bad thing.
- Will there be a definite need for a pacemaker after the valve repair/replacement? Answer: No! We are not sure why we thought this, but we got set straight on it today. No pacemaker is needed for any known reason in the future. PRAISE GOD!
- What is the down side of getting an echo today? Answer: There was a plan of a sedated echo on pacemaker pre-op day. …We stated that they would likely not need to sedate Caden for the echo because he has always shown great self control during echos. Of course today would be the day Caden threw his first full blown temper tantrum in a clinic in response to, of all things, getting his blood pressure taken. So needless to say, this shed doubt on our claims of self control and they were a little skeptical about trying an echo today, but eventually agreed to give it a try. Caden was a champ and they got everything they needed with absolutely no problems from Caden. Uhm..There’s a TV over the bed in the echo room and the big purple dinosaur was a very good distraction as usual. We will be working on the blood pressure thing at home in the coming weeks with our own blood pressure machine. 😉
So after the echo we learned that the cardiologist had been called into surgery. We decided to give the nurse my cell number and go for a late lunch in the cafeteria where Caden proceeded to throw another tantrum. At this point we called it a day since we had not heard from the cardiologist and headed to the van. As I was packing the van I noticed that I had a message on my cell. The nurse had left a message a few minutes earlier saying the cardiologist was out of surgery and needed to speak to us in person back in the clinic. I left Sherry in the van with the boys and I went back into the hospital to see what was going on. Once I arrived I was the only non-staff person in the area so we talked in the nurses station area of the peds cardiology clinic. This was good because the doctor was able to draw some pictures on the whiteboard to help me understand why Caden needed the valve repair sooner rather than later. My first question was, “Will the surgeon agree this time?” The cardiologist said that he had no doubt that the surgeon would agree with moving forward with surgery within the next few weeks. I did get Sherry on speaker phone to make sure she had a chance to ask questions. Ultimately the cardiologist said this was not an “emergent issue”, but that it could not wait six months before being repaired because the hypertrophy was progressing.
So as things stand right now we are waiting on a call to give us a surgery date that we expect to hit the calendar about three weeks from now. The surgery will be to remove the pacemaker and more importantly repair the aortic output problems. This may be a valve replacement or it may be an aorta valve repair of some sort. We will know more details on the surgical approach once we meet with the surgeon himself but it sounds like the final surgical decision may not come until surgery day when they open the aorta just above the aortic valve. We are not sure about the ear tube and g-tube issues at this point. We will see if one or both can be done the same day as the heart surgery. The valve repair/replacement is a huge and tedious surgery so the other ‘little’ procedures sort of take a back burner for now.
One good thing about getting all the heart stuff done at once is that trips to the ICU will be minimized. Due to Caden’s age and unique form of communication we are concerned about being forced to leave him awake and alone in the PCICU even for shift changes. Right now he is cognitively around a 3 1/2 year old, but uses a modified form of signing to communicate that only our immediate family can understand. He is noticeably concerned about all that is going on and we want to minimize the emotional impact as much as possible. I asked the cardiologist to try and arrange for us to have an isolation room in the PCICU where we might be allowed to stay with Caden in the PCICU 24/7 even during shift change. He understood our concerns and would work to try and accommodate the request.
As a side note, I lost a crown while eating some malted milk balls and drinking a Coke this afternoon. This happened while on the elevator on my way back to get the news about the surgery from Caden’s cardiologist. This bought me my third ride in a dentist chair this week. The tooth today was cracked and required an extensive repair. Fortunately, the dentist is open late and was able to work me in…again. I had a different crown come off Sunday night (with a craked tooth also) that eventually resulted in an extraction yesterday. That is two different crowns coming off with cracked teeth under both within a few days. Sherry keeps reminding me that “This is the day the Lord has made”. I am really working on the rejoicing and being glad part.
Prayer Requests:
- Whole body healing for Caden, as always
- Continued protection from infections, colds, and all illnesses (Caden is on his third antibioitc for sinus junk in less than a month)
- Continued discernment for the doctors and us.
- Continued strength and peace for Sherry and me. AND my teeth!
- Protection over all our boys’ emotions.
- Support for our family in general. We just finished leading a Growing Kids God’s Way class and are not currently in a small group.