Patrick

I am finally snagging a chance to post on here. Thank you everyone for the amazing support and messages we have been receiving! While I have not been able to respond to many, I have read every single email, facebook comment, text message, and carrier pigeon correspondence. Patrick has quite the fan base and we are SO appreciative.

The main things they are watching with Patrick are his heart rate and oxygen saturation levels. There is a blood vessel called the ductus arteriosus that takes blood to the lungs while the baby is growing in the womb. After birth, the vessel closes up and the pulmonary artery takes over the task of taking blood to the lungs where they now become enriched with oxygen. Because Patrick’s pulmonary artery seemed compromised due to the problems with his heart, the doctors have been medicating Patrick with prostaglandin(s) to temporarily keep his patent ductus arteriosus (PDA) open. This allowed the PDA to help compensate for the under-developed pulmonary artery by keeping blood flow to the lungs and, in the long run, sending oxygen throughout Patrick’s little body.

This morning the cardiology team conferenced over Patrick’s case to discuss a plan of attack. From what they saw in Patrick’s echo, his pulmonary artery is working a little more than they may have initially thought it would. So this morning they took him off of the medication to see how he does without the PDA. In the morning they will do another echo to see if the PDA has closed up and check things out. So far he his oxygen saturation level has stayed in a decent range and a fun side benefit of going off the meds is that Patrick is able to be more alert. He can actually open his eyes and keep them open for awhile, which we of course think is amazing and so stinking cute. Pretty much everything he does is awesome in our book.

Depending on how things go with this PDA experiment, and with anything else that comes up in the next few days (or weeks), the doctors have a few options they are considering. I will now make a lame attempt to tell you about the procedures that are on the table. Heart Moms and Dads: please feel free to correct me where I misunderstand and misinform.

One route would be the Modified Blalock-Taussig Shunt–which would be a tube that they insert between the pulmonary artery and a branch of the aorta. This would be a temporary fix to make sure blood gets to Patrick’s lungs. Eventually Patrick would need more surgery for a longer-lasting fix.

Another possible procedure is a heart catheter. I am not entirely sure if this is just something that they would use to learn more about how his heart is working, but the impression that I got was that they can insert a balloon into Patrick’s heart and then put a little air in the balloon to open up his pulmonary artery a little more. They would go in through his leg/groin and up into his heart.

There is a third option that they’ve mentioned, but I don’t remember for certain what it was called. I think it is the Starnes Procedure. I need to find out more about that one–I’m sure it’s been explained to us but not necessarily in connection with the name of the procedure.

The doctors seem to anticipate that Patrick will need the Glenn Procedure eventually, regardless of what they do for a temporary solution right now. I *think* that the Glenn is either similar too or interchangeable/combined with the Fontan (re-routing the plumbing of the heart to skip Patrick’s faulty tricuspid valve).

There is still a chance that Patrick will not need surgery immediately, and we can take him home and grow him before the Glenn Procedure is absolutely necessary.

Hopefully I’ll be able to get on here more often now. Braden has been great about updating Facebook, I’ll try to get some photos and videos on here as well.

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All Roads Lead to Nigro

Yesterday I had a consultation with Dr. Jedeikin from the Arizona Pediatric Cardiology group (affiliated with the Phoenix Children’s Hospital) for a second opinion/option kind of thing. We were tempted to cancel the appointment because we feel so good about the St. Joe’s group, but we decided that we should see what Dr. Jedeikin  had to say. You know, due diligence and everything.

Dr. Jedeikin seems really great. (And I’m not just saying that because I like his South African accent…) He is very, very passionate about hearts and cardiology. He did a fetal echo and went over Ebstein’s Anomaly with me again. I always learn new things about the heart, and I came away in awe of all of the many facets of a human heart–how do all of those parts work perfectly in most people?!

Dr. Jedeikin’s assessment and approach to Pedro’s case is pretty much the same as those we’ve heard from the other doctors involved. He hopes that immediate surgery will not be necessary, and has pretty much the same plan for monitoring our little guy’s heart–both pre and post delivery. He had good things to say about the Phoenix Children’s Hospital (PCH), but apparently he could work with us even if we choose St. Joe’s for delivery. He encouraged me to deliver at St. Joe’s since that is where my new OB delivers (rather than switch OB’s again in order to deliver at the hospital near PCH). From this I concluded that both hospitals are a good choice, and we just need to pick the one that we feel most comfortable with. They both have Level 3 NICU’s.

Probably the most interesting/encouraging part of this consultation was that Dr. Jedeikin would involve Dr. Nigro for the surgery aspect. Dr. Nigro seems to be the go-to guy for surgery in these cases, regardless of which hospital we go to.

So, since:

  1. the hospitals are comparable
  2. we get Dr. Nigro either way
  3. the Pediatric Cardiologists are excellent either way

…we are free to choose the hospital and Pediatric Cardiologist(s)  that we feel the best about. We still appreciate that at St. Joe’s I would deliver and recover at the same hospital where Pedro would be in the NICU. We also feel like the program with the St. Joe’s cardiology group is a better fit for us–much more supportive and user-friendly. Also, once you meet Beth, the nurse practitioner, it’s a no-brainer. She is off-the-hook amazing.

Although it did not change our mind, I’m really glad I went to see Dr. Jedeikin. Now we can feel even more confident about our decisions, and I appreciated learning more about Pedro’s heart. Here are a few things I now understand after meeting with him:

  • The tricuspid valve is made up of three leaflets, one of them is the ‘Septal leaflet.’ Pedro’s septal leaflet is dysplastic–which means it is gnarly, thickened and crumply. The other two leaflets are doing all of the work to open and close the valve as best they can–which is why one of the leaflets is longer and floppier, it’s trying to cover the Septal leaflet’s territory too.
  • Dr. Jedeikin did not think that Pedro’s Septal Leaflet would be fixable because it is so dysplastic.
  • If surgery does become necessary, it is possible that they would move the leaflets closer together so that the functional leaflets can adequately close the valve with each heartbeat.
  • He didn’t go into all of the details, but if it becomes necessary to surgically re-route Pedro’s heart so that it operates with a single ventricle scenario (not preferable), there are a few different procedures:

Blalock-Tuassig Shunt

Starnes Procedure

Glenn Procedure

Fontan Procedure

{Pedro could need all, none, or some combination of the procedures. We have heard a little about these procedures before, but had not learned all of the names yet. I’ll activate hyperlinks if I find good descriptions for them.}

Oh and, Pedro’s new trick of the day was rolling. The sonnographer laughed with me this time when Pedro would roll away while they were trying to record his heart. Then he would roll back and punch the ultrasound wand. He definitely has a little personality already ♥