Tuesday, December 24, 2013

Quick Update and a Confused MD

Just a quick update . . . yesterday we had an appointment with the perinatologist who specializes in high risk situations and will be taking over my OB care for the remainder of my pregnancy. Before we met with her, however, we met with another doctor who seemed . . . less than competent.


This doctor seemed like she had just graduated medical school last week and didn't seem to really have an idea of what was going on. We asked questions and she often just seemed . . . confused. And these were basic questions like "what was my blood pressure?" which was written on the chart in front of her. Her response? "Uh . . . I don't know . . ."

"Yeah, I can't see any bricks . . ."

She might have had better luck if she'd actually looked up my charts and records on the computer that was in the room for that purpose . . . but then again, maybe not.

"Wait, so the knee bone is connected to the . . . what?"

Afterwards, the perinatologist briefly came in to meet with us. She has a tendency to sermonize at us a little (and give me the same spiel as the last time I saw her) but Jon found the best way to get a dialogue going is to just jump right in the middle of her monologue. Her bedside manner isn't our favorite but she seems extremely knowledgable and comes highly recommended from a friend who works at St. Joseph's. We trust that she'll take good care of me as well as Max during delivery (as she will thankfully be delivering him and not the other doctor . . . ).

Aside from the confused doctor who couldn't read my chart, the appointment went well. Max and I both look good and he's just getting bigger :-)

Saturday, December 21, 2013

"Support" Group

Yesterday, after we got home from our appointments, I posted in an online support group Jon and I joined for families with kids with HLHS. I just did a short post saying that our doctors were recommending a heart transplant instead of the three stage surgeries and I asked if anyone else had been through that or had any words of wisdom for us as we move forward.

Turns out,  the "support" group is bullshit.

All of the responses were extremely negative, judgmental, aggressive, and attacking. They all assumed that we were at some podunk hospital with stupid doctors (even though PCH is one of the top rated children's hospitals and our surgeon has a personal record of 100% success with HLHS surgeries) and kept saying we were being ridiculous for even thinking about a transplant. What I found ridiculous about their comments is that kids with HLHS who go through the three stage surgeries often need a transplant eventually. Some are able to live with the jimmy-rigged system that the three surgeries set up but more often than not, they need transplants so Max will actually have to undergo fewer surgeries. I'm not saying that one way is better than the other, I just found it more frustrating that in a group that is supposed to be supportive, we were ganged up on by mean, judgmental people.


However, one of our surgeons did warn us that people might have this response because a lot of people see transplant as a failure of other therapies but with our case, it's actually going to be the safer route for Max and his odds of survival are better. We have just realized that we are going to make the best possible decisions for our son and while some people might not understand and might judge us for them, we have to do what we feel is best for him. My aunt gave us excellent advice to find good doctors and trust them. She also advised us to not listen to anyone on the internet as they are not doctors and aren't qualified to pass judgment. It's just a little disappointing to look to a support group for support (imagine that!) and instead be met with so much negativity.

We have a couple days off from doctors and then on Monday we have an appointment with the perinatologist/OB . . . I wasn't super thrilled with my experience last time but I'm trying to give them the benefit of a doubt that maybe it was just a weird day in the office. However, if our experience isn't a positive one, I'm going to try and change doctors. Luckily we love our cardio team :-)

Hospital Tour and Heart Transplant Info

Yesterday we went to Phoenix Children's Hospital (PCH) and after getting a tour of the cardiac ICU, we met with the coordinator of the transplant team as well as several other people. The CICU was actually pretty great. They have 24 private rooms and each one has sleeper benches and/or chairs, private bathrooms, and they have laundry facilities for families to use. Also outside the CICU is a small kitchen and the hospital staff encourage families to bring food from home and keep it there in the event they get tired of hospital food. 

Two floors below is a really great outdoor space, their rooftop garden, where you can have lunch or just hang out outside. 

PCH's Rooftop Garden

Everyone seemed really nice and the hospital itself has a lot of natural light instead of feeling really industrial. If we have to spend a ridiculous amount of time in a hospital, I think this is about as nice as we could get.

Plus the exterior lights at night are awesome.

During our meeting, we met with our transplant team coordinator, the social worker, and the two surgeons who will be working on Max. We discussed our options with Max's treatment and while babies with HLHS would typically undergo the three stage surgeries, both surgeons agreed with our cardiologist's assessment that the best course of action would be a heart transplant due to his valve regurgitation. They told us that they have meetings every Thursday with a total of about 30 doctors to discuss the cases they have and they discussed us and they think a transplant would give Max the best chance for survival. We then learned aaaaaaaaaall about heart transplants, the process, and their after care. It was a LOT of information. We have a huge stack of literature that they sent us home with us as well as a full deck of business cards with all of their phone numbers. It was mostly just an overwhelming day in terms of information but we agreed that we'd rather know all the information up front to give ourselves time to process all of it.

We're also pretty happy with both of the surgeons. While we have a current plan for what we're going to do, they are both adaptable to potentially change how we treat Max based on any data or condition changes. Which is pretty nice, to work with people that aren't super rigid and are willing to be flexible when working with a non-textbook situation.


Hello, everyone!

We've decided to create a blog to post updates about our little guy, Max, and his journey with Hypoplastic Left Heart Syndrome (HLHS) and his heart transplant.

For more info about HLHS, please check out the link to the page "What is HLHS?"

We'll try and update when we have news about our little guy so we can keep everyone posted :-)