Three Hundred-Thirty-Third Care Page Post

Josiah’s Updates

12-8-15 Cardiology Appointment

Posted Dec 8, 2015 6:34pm

Josiah and I are back in Ann Arbor for another University of Michigan medical appointment, this time with Pediatric Cardiology. He’ll always be seen by Peds Cardio regardless of age due to the Congenital Heart Defects he carries (regular cardiologists don’t know about birth defect issues, just adult-onset heart disease). Today we got the results of the recent Echocardiogram and a copy of that report also. We didn’t get to speak with the Social Worker, unfortunately, as I’d wanted to run aspects of the “case” and other issues (like with Josiah’s current alleged “Supports Coordinator”) by her for some insight & action points. Hopefully she’ll call, or we can communicate later via email. Since we’ve been working with her since Josiah’s first heart surgery at 2 months old, it’s always nice to get to see her when such opportunities arise.

We spent the bulk of today’s visit with the resident/junior doctor (I didn’t catch his title) as the senior physician was under the weather with a laryngitis type of illness so having difficulty speaking.

Here are the highlights:

The Echo shows that his heart is mostly stable. There continue to be issues with mild to moderate trabeculation of the Left Ventricular muscle, insufficiency (leakage) of the aortic valve (Josiah’s is a malformed “Bi-Cuspid”/2-flapped valve rather than the typical “Tri-cuspid”/3-flapped one), and dilation of the aortic root. This dilation may mean he’ll need an intervention down the road to avoid aneurysm and/or other potential problems, but not currently.

“What areas per the Echo, EKG, and history are you currently most concerned about?” Nothing is currently too concerning. They continue to monitor the heart function, especially as is related to the “heavily trabeculated Left Ventrical”. The aortic dilation has not appreciably changed. The protocols for when surgery is recommended by the ACC (American Association of Cardiac Care?) for dilated aortic root have expanded to now be 5cm, J’s current dilation is at 3.56cm, just slightly over what would be considered “normal range” and these numbers, to some extent, take into account growth & change over time and total body mass.

“When is further surgery anticipated at this point?” (I had to, of course, rehash what J’s Heart Surgeon had said about “it’s highly unlikely that he’s going 35 years without another heart surgery, and next time I’m replacing the valve!” and the implication of that statement etc now & going forward–My specialty is beating dead horses in anticipation of resurrection power!) Not likely for at least another 5-10 years (as a worst case scenario, at least as far as they can speculate given Josiah’s current state). There are three possible scenarios that may require further surgery: 1. the Aortic Root; 2. the Bi-Cuspid Aortic Valve; and 3. Both the Root & the Valve. If things continue similarly to how they’ve progressed then he may not require another heart surgery until he’s around 50 years old! This is a better prognosis than the cardiac surgeon’s nurse’s interpretation of the surgeon’s above statement in anticipation of surgery during the Junior High years. Josiah’s last Heart Surgery was in May of 2000, when he was 4 1/2…

“What specifically has changed, and to what degree?” Not so much the Aortic Valve or the Trabeculation, but the root to some degree. The associate doctor attempted to find out when Trabeculation first became evident and it was unclear from a cursory review of some of the previous Echo reports. It was noted at least as early as 2006. The main Cardiologist discussed this Trabeculation and another way of viewing the Left Ventricular muscle, in particular, about how there is usually a thickening of the heart muscle, and an interweaving of the tissues during the fetal state, somewhat like a lattice (based on his gestures). Josiah’s muscle doesn’t quite meet the criteria for that condition, but this doctor speculated that these LV issues are more congenital in nature and not likely Caused by High Blood Pressure, though they do believe continuing to keep his BP down may help this trabeculation improved to some degree.

Defect areas of his heart and blood vessels (we talked about the vessels a bit here) are stable for the most part.

We discussed Josiah’s ongoing periodic sensations that are sudden, startling, and scary to him. There is no real way to monitor for these so infrequent episodes. Both doctors reassured Josiah that these incidents should not be a problem and he doesn’t need to be concerned. However, if he does have events that go on for longer periods of time they want to be informed. Josiah articulated his own understanding that he/we can always call if there are any issues (this wasn’t directly discussed today or recently with other providers, so it was nice to see that Josiah has retained this important component of his ongoing medical care!)…Perhaps down the road if sensations increase they’ll set him up with a 2 day monitoring device, or there is some other type of monitor that can go on for a month, I believe. These sensations are not likely to be side effects of his meds.

“What impact may the sustained High Blood Pressure be having?” There is an increased risk of developing Atherosclerosis (hardening of the arteries) at an earlier age, like in his 40s or 50s, but not much concern at J’s current age. They would not describe the heart condition as “organ damage”, as I was discussing perspectives shared from before J’s BPs were under better control. I also asked about whether Josiah’s potential “connective tissue disorder” may have an impact on this situation. The associate discussed how certain syndromes, like Marfan Syndrome, or conditions warrant closer scrutiny. It’s possible that they would apply some of these more stringent standards to Josiah’s case as his “presumed genetic syndrome” has thus far remained unidentified.

“What is the projected course going forward?” Yearly appointments with Echos every two years. In the event the Nephrologist continues to order Echos on an annual basis (she’s watching some different things than they are, to some extent) they are fine if the scheduling allows for getting their review of the Echo at our annual appointments (something I worked on having happen this year too). I’d rather get cardiology input on Echo-Cardiograms because the Heart is obviously their area of expertise.

The associate pulled up some of the Echo images/videos and we watched a couple of “clips”. The part showing the Trabeculation showed an area of the Left Ventrical interior that seemed to look like another valve in that two of these “fingers” seemed to close themselves off for a couple of heartbeats (a slightly different rhythm) so I asked him a relatively speculative question about some of Josiah’s blood not circulating properly as some of it was seemingly captured by the LV wall. Anyway he said “it’s funny you should mention that” and this segued into a discussion about their plan to have Josiah begin taking Aspirin to reduce the risk of Stroke (and Heart Attack) form possible blood clotting that could be minimally associated with his trabeculation scenario. This will likely be a Baby Aspirin a day, but they will seek approval from Liver Transplant before fully proceeding with this plan. The senior doctor said it was OK if these discussions don’t even take place until our next Transplant Clinic visit, but I said I would also raise this med change next time I interfaced with the Transplant Pharmacy (we have contact on at least a monthly basis) to see if that med change will be able to go through then, if it hasn’t already happened. Heart is supposed to contact Liver to get this together, but we’ll see…

I asked if they had any issues with us resuming Stratterra, but they are fine with that and consider it a pretty typical approach for Cardiac kids with ADHD.

“What are today’s main takeaways?” Overall his heart is very stable per the Echo. Symptoms haven’t changed very much. We will plan to start Aspirin to reduce the risk of blood clots (this is a low risk now). Some of the blood flow atypicalities are associated with the “heavily trabeculated left ventrical”.

It’s hard to know with Josiah what is causative and what is symptomatic. I said this was definitely the case in dealing with learning and autism issues. So many of the aspects of the totality of Josiah’s needs overlap each other (like Sleep Disorders) so it is hard to know how/where best to intervene (my interpretation) here. Just now I’m thinking it could be instructive to attempt to draw up some type of Venn Diagram to show some of the interrelatedness of multiple medical, therapeutic, and educational aspects of Josiah’s needs. Perhaps such a visual could help us even better analyze some of these aspects of Josiah’s life and needs. I wonder if there is a tool to aid in this? This could be something that the Genetics Department does to some extent, as they are the ones who also do the Family History Genograms related to disease and other known conditions.

Here’s some of what else we took care of today:

Valerie met hurriedly with the Researcher to sign consents, etc to get the pre-screening for the Type II Diabetes Research study in the Family Research Center around 1:30pm (rushing there from Josiah’s 10am appt).

Setting Josiah up at the FRC to work independently while V did further business.

Getting the phone info from the FRC & calling them from the Radiology Department so they could reach V if J had some type of problem (V has no cell phone!)

Getting a Liver Ultrasound for Valerie to see if she meets study criteria.

Going to the Guest Services Department to get another Reduced Parking Pass.

Going down to Pediatric Neurological Ophthalmology (they are literally off of the same elevators on a different floor from Guest Services) to see about the Referral for Visual/Vision Therapy that we haven’t received yet. The Receptionist said that the OT Referral was not done properly by the Doctor and that she’d emailed him about it recently, but she’d contact him again. The way it had been sent through previously wasn’t acceptable from the OT point of view.

Walking through the usual Art Display (that was mostly being dismantled–bummer) to take in a bit of the University Art.

When back at the FRC getting a printout of the Due Process Hearing Request paperwork that Michael had faxed to Allen Park and the State of Michigan and also sending a follow-up fax of these 40 total pages in a format that didn’t shrink the text. Also when Michael sent these items they were in two separate sendings, a 3 page Michigan required document, and a 36 page Valerie created Due Process Hearing Request, including a Release of Information page. These were combined with a cover page to constitute a Complete Due Process Hearing Request. Then the entire packet was faxed by a kindly staff person here at U of M to both Allen Park and the State of Michigan.

Josiah thought he saw his friend Brett Bowman’s mom, Kim, here and FRC staff confirmed her presence earlier in the room. They wouldn’t confirm if Brett is here as a patient today so when we leave we’ll stop by Information to see if Brett is here and try to visit Brett and his mom at his presumed room.

Well this is pretty massive so will mostly be posted as is. Please forgive my inaccuracies and verbosity (if you read Jazzman at all you know that V struggles with v!)…and thanks again for your prayers, support, and encourageing comments. All of these are very sustaining for us during challenging times.

Blessings to all…especially in this Season of Light & Life, honoring Jesus Christ’s celebratory nascence into our world to provide Hope, Peace, Joy, and the promise of Paradise for all who receive Him as their own!

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