The Good, The Not-As-Good, and The Medication

I'm going to split this blog post up with the information and discussions, according to the appointments we had. We had an appointment and echo with Dr. Golander, our cardiologist first and then an appointment with Dr. Erez, our surgeon second.

Dr. Golander Appointment

The moment that we walked into the pediatric cardiology department, our smiley, rambunctious, mischievous and very happy Tehilla changed. Whoever says, "Ehhh, she's just a baby. She'll get over it. She won't remember a thing." has no idea what they are talking about. She immediately dropped her smile, opened her eyes very very wide and was extremely serious. Nothing made her smile, no matter our numerous attempts. She was terrified.

We had weighed her at home, which was a good thing, because there always is a huge discrepancy between all of the scales in the hospital. At home, she weighed 8.6 kg (18.92 lbs). The scale they weighed her on said, 9 kg, and after weighing her again on a different scale later on, she weighed 8.6 kg. This is why we purchased a new scale- to keep a consistent method of monitoring her weight.

Her saturation was 85! Exactly where we want it to be for post-Glenn.

Her blood pressure was through the roof, extremely high. They tested and retested it over and over, on different limbs, with different cuffs. Her blood pressure is extraordinarily high.

Then we did her echo. I was sure that Tehilla would not cooperate at all, but with the help of Elmo's World, she lay completely still and allowed them to do her echo from start to finish, even the parts on her neck which are pretty uncomfortable.

The first thing that Dr. Golander said is that her pulmonary arteries are doing great! The patch that they put on during her surgery is doing well and everything looks fantastic!

Next, Dr. Golander studied the images of her heart functionality. Still not good. There has been no change since her previous echo, 5 weeks ago. She is still in heart failure.

However, because we already know about her blood pressure, we know that this is the cause. Meaning, in the glimmer of positivity, we understand the cause of her reduced heart function. Her blood pressure is extremely high. Knowing the cause of the reduced heart function, determines, that if we can get her blood pressure under control, it is reasonable to believe that her heart function will get better. To get her blood pressure under control, we need more medication.

The Enalapril has not been helping.  So, Dr. Golander is adding Carvedilol- a medication given for heart failure.

Often, when I speak to newly diagnosed heart parents, I express to them how important their input is to their child's care and how important advocating is. It usually does not take too long for these heart parents to find their voice and understand what I am talking about.

Dr. Golander had first mentioned that there were many different medications that he could try. He initially wanted to start her on a different medication. He told us that it would have a side effect of slightly sedating her. This is when I spoke up and said, that if there were different options, we should try those. We are trying to get Tehilla active and are soon taking her for an evaluation for physical therapy. I don't think that a medication that would sedate her, would help her progress. Our cardiologist completely agreed and chose Carvedilol. We start her on a lower dose and every two weeks, the dose increases slightly.

We also discussed that Tehilla was clearly very stressed in the hospital and seeing our cardiologist and that it was very important that we monitor her blood pressure at home. We have been unsuccessful at finding a pediatric blood pressure monitor here in Israel, that is available to be purchased privately.

I'm going to utilize this blog to help us, since we need this immediately. I need to order this blood pressure monitor from the US. If anyone reading this blog is coming to Israel or knows someone that is coming in the next week or so, please email us at: tehillasheart@gmail.com. We will have it sent to you and pick it up from wherever you are staying in Israel. Thanks in advance!

Overall, Dr. Golander was happy with what he saw. I told him about what happened with her blood tests and the Potassium test and that it needed to be done through the neck. After all that, he said, "I really don't need those test results. Forget it." I am really happy that we do not need to give her the blood test from her neck.

He wants to see her again in a month and we will do another echo.


Dr. Erez Appointment
We saw our nurse, Yifat. The moment that Tehilla saw her, her fears subsided and she smiled the biggest smile. She loves Yifat and clearly it goes both ways. Tehilla and Yifat pranced around giggling and snuggling. She really is an exceptional nurse!

Yifat retook her blood pressure and it still was extremely high. We then saw Dr. Erez, our surgeon. He was very happy to see Tehilla playing and smiling and screeching to play with his stethoscope. He examined the images from her echo and looked at her recorded vitals.

We told him what Dr. Golander had said and about the new medication. He said that from the images, he would consider her heart failure to be mild (YAY!!!) and he expects that with the medication change, her blood pressure will go down and her heart functionality will go up.

He then said, that truthfully, he is amazed and in a weird way happy to see that she is capable of such high blood pressure. What he meant by that is, the fact that her heart could pump such an extremely high blood pressure, meant that is was doing really well. It means that once we get her blood pressure down, her heart will be working great! I have to say, that Ron and I breathed a big sigh of relief from hearing such a positive spin.

He asked us if she was up to date on her vaccinations. We told him that she is behind and needs the MMRV, but hasn't gotten it because she was sick and hospitalized a few times and then had surgery. He said that we only had to wait 6 weeks post surgery. There is currently a chickenpox outbreak going on, which has us a bit worried. He said to get her the shot tomorrow, which is what we will do.

He then asked us if we had any questions, since we should not be seeing him again for about two years (WOW!). We talked to him about signs of heart failure and how we should assess them, now that she is not in interstage. He talked to us about understanding what to expect when she will get sick and to make sure to understand the reason behind different signs of heart failure.

He then brought up with us the importance to give her as normal of a life as possible. He suggested putting her in nursery at age 2. I'm not going to lie, my blood pressure probably sky rocketed at that point. We spoke in length with him about it and exposing her to different viruses which is sure to happen from putting her in school. He felt that it will be a good time, when she is 2 years old. He stressed not to keep her back in any way.

My instincts are to keep Tehilla within an arms length until she is 64 (please G-d), but Ron and I both know, that Dr. Erez is right. We have gotten her to the point where she will be doing very well, health wise and our next biggest obstacle is for us to let go (somewhat) and let her set her own limits. Again, this is exceptionally hard for us to fathom, but that's what we have been working towards- a great life for her. And it starts with nursery school...

So, my next step is to start doing FBI worthy checks into nurseries for next year. Yes, I do need to remind myself to breath while thinking about this. No, I have no idea how I will be able to let go. We will also be looking into Tehilla's rights into a medical shadow.

Deep breaths. Small steps...Breath in, breath out...