Adios Amiodarone

Patrick had an appointment with Beth at the heart center today. Gary was the unlucky one who was tasked with weighing, measuring, monitoring, and echo-ing a squirmy, opinionated 7-month-old. Gary was great. Patrick was…difficult. But they were able to get enough information to tell us that Patrick is doing well. Things look the same as last time–the tricuspid valve is pretty leaky but that’s why they did the Glenn procedure. As long as the right side of his heart holds up under the pressure from the regurgitated blood, there may not be a need for more surgery in his future. This is sort of uncharted territory so we’ll have to see how it goes, but the cardiologists seem pleased with how he is doing.

In fact, he has graduated from his amiodarone–a once daily med he has been on since he was born. Amiodarone prevents the SVT (super-high heart rate) episodes that Patrick had a couple of times as a newborn while still in the PCTICU. At this point, P has outgrown the dose he’s been on and since they have been planning to take him off of the drug anyway, it is better to do it now rather than up the dose. It will take awhile to clear from his system, so in a month or so we will start a 21-day ACT monitor again (he had one for the first couple of months last Fall). I’m not that excited for the monitor, but it will be so nice to have the peace of mind knowing that the doctors (and us parents) will be alerted if his heart does something funky. AND we are happy to have him off of one more drug. Now all he will be taking is aspirin once a day for the rest of his life (to avoid any blood clots in his heart–particularly the troublesome right side).

Patrick doesn’t need to go back to the clinic until after we’re done with the ACT monitor–so not for two months! After that we may only need to take him every 4-6 months. How rad is that?

We should be hearing from someone regarding physical therapy–Patrick  is lagging a little on some of his physical development. His sternum is wired together, and you can feel the bumps under his scar. As you can imagine, this makes tummy time a bit uncomfortable. Also, because the Glenn procedure re-routed the blood from his upper-body, a natural bi-product is that his head has gotten bigger (in relation to the growth of the rest of his body). With his head so heavy, he hasn’t quite gotten sturdy in the sitting position. He’s a strong kid, though, and he’ll catch up. He just wants to skip sitting and crawling and go to walking–if he had his way we’d have him standing, jumping, or walking (assisted) ALL the time.

These photos are from his last regular pediatrician appointment–he’s getting caught up on the immunizations we had to postpone during the pre and post-surgery time period. (Tia, Patrick’s nanny, was nice enough to come with me to the appointment. Six needles…three in each leg! He was a trooper, though.)

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Six Months + Cardiac Follow-Up

A week ago our baby boy crossed over to the second half of his first year. What the?!
Here he is in all his 6-month glory:

And a couple of days later…

Also, we had an appointment at the heart center this morning. Patrick is doing well and no longer has any restrictions. Just regular baby precautions. Now we need to help him catch up on his tummy-time and sitting skills. In a couple of months he may get to quite his daily meds. And stay tuned because we get to start solid foods this week!

Our Heart Boys

Patrick had a follow-up appointment at the heart center this morning and they were pleased with how well he is doing post-op. He has gained weight (tipping the scales at 15 lbs 1 ounce) and his “zipper” is healing nicely. Patrick’s head was in the 40th percentile before surgery and despite the amount of blood that backs up in a baby’s head after the Glenn procedure, he is still only up to the 50th percentile for head size. That means he only has “Glenn head” minimally.

Patrick’s cousin, Jeremiah,  is settled at Primary Children’s Medical Center. His lungs are stronger than they had initially thought and they have been talking about ECMO (a machine that will put oxygen in his blood) and surgery today. From what I have heard, they have had some ups and downs, but Jeremiah continues to fight and to surpass expectations. Thanks everyone for your prayers for him. Be strong baby J, we love you!

It’s a Date

We met with Patrick’s cardiothoracic surgeon, Dr. Nigro, and Beth on Friday to discuss surgery. We were relieved to find out that Patrick’s surgery is not an emergency and can wait until after the holidays. Patrick is scheduled for a tricuspid valve repair and possible Glenn on January 6th, 2011.

The valve repair requires open-heart surgery. Once they look at and work on the tricuspid valve they will decide if Patrick also needs the Glenn Procedure to take some pressure off of the right side of his heart. The Glenn would connect the superior vena cava (the vessel that brings blood from the upper body to the heart) directly to the pulmonary artery (which normally takes oxygen-poor blood from the heart to the lungs), skipping the right side of the heart entirely.

Once Patrick has gone under anesthesia, he will get a breathing tube and an echo tube. They will make an incision in his chest and open the bone.

He will be on a heart-lung machine–his heart will be asleep while they assess and repair the valve as well as possible. Then they will decide if we need the Glenn. They will wake up Patrick’s heart and, if the Glenn is needed, they will do that procedure. They will also patch up the ASD (hole between the right and left atriums), although they may leave a little bit of a hole to relieve pressure.

Patrick will be in the PCTICU for 7-10 days. Recovery is straight-forward after he leaves the hospital. They expect him to rebound quickly. Risks are minimal–Dr. Nigro estimated a risk factor of 1-2% for major complications. Patrick will need a blood transfusion, so Braden and I had bloodwork done to see if we are a match to donate. He’ll need 3 units of FFP & platelets. We are waiting for the hospital to contact us with the results of our bloodwork, and to let us know what Patrick’s blood type is.

We feel very blessed to not be spending the holidays at the hospital. AND we were given clearance to drive to Southern California for Christmas! We are looking forward to taking our mind off things for a bit as we vacation both in California and then with my side of the family who are visiting Arizona after Christmas. Patrick has many aunts, uncles, cousins and a grandpa to meet!

Upcoming Cardiac Catheterization

Patrick has been scheduled for cardiac catheterization on December 8th at 9:30am. We will check him in at 7:30am that morning and he’ll be kept overnight after the procedure (probably discharged by lunchtime on the 9th). Before the procedure they will give him a full check-up to clear him for the catheter. Patrick will go under general anesthesia for this event–which sounds better to me than trying to keep him calm and still. Here is a little description of the procedure:


I was relieved to learn that Patrick won’t be required to fast for an inordinate amount of time or anything. However, he is not to have any breastmilk/formula after 3am on the 8th, but can continue drinking Pedialyte, water, or diluted apple juice between 3am-5:30am. Past 5:30 he is not to eat or drink until he wakes up following catheterization.
After this they will talk to us about when surgery will happen and what they plan to do based on what they see in his messed-up little heart. If there are things that you think we should ask beforehand about the heart catheter, or about the surgery in general, let us know.

Leaky

I’ve never seen Patrick SO happy to be back home, but after all of his tests at the Heart Center yesterday afternoon Patrick looked like he could’ve kissed the living room floor upon returning to familiar surroundings. One of his favorite things to watch is the ceiling fan, and he was full of smiles for Mr. Fan. Next he was thrilled to sit in his swing again, and he sat and talked to the little lambs on the swing mobile and smiled at his own reflection in the mirror above the swing. He sure seems to like the handsome dude that looks back at him!

Although he was pretty unhappy about being held down for a chest x-ray, echo, and EKG–not to mention having blood drawn from his little arm–for the most part Patrick was smiley and friendly to the doctors and nurses. Even while the cardiologists were giving us some serious news, Patrick grinned and grinned at Doctor Rhee. Braden and I were not quite so cheerful about the doctors’ report that Patrick’s valve has gotten very, very leaky. Right now the x-ray shows that his heart has not become much more enlarged, but the echo showed that his tricuspid valve is allowing much more blood to leak back into the atrium. His heart is working SUPER hard, and it is only a matter of time before his atrium becomes so enlarged that his heart fails.

Fortunately, Patrick has been eating well and gaining weight, because it looks like the doctors will need to intervene earlier than we had planned. The bloodwork they ordered will tell us how far into heart failure he is, and in the next couple of weeks they will probably do a heart catheter to get a better look at his valve. On Tuesdays the doctors all meet to discuss certain cases and Patrick is on the docket for next Tuesday. Hopefully they’ll have a plan for us after that. Beth indicated that once they decide that he needs surgery, it will probably be about a month before the procedure happens.

For now we are watching for signs of heart failure like vomiting, appetite issues, or labored breathing. Our travel plans are on hold and we are to continue our germaphobic precautions. Airplane rides are definitely out of the question, and even road tripping may be kiboshed so that we stay close to Patrick’s medical team.

Star Patient

We have been having good days over here in the PCTICU. Patrick just had his echo this morning, so we’ll see if his PDA has closed and if his pulmonary artery looks good.

Patrick is no longer on any IV meds or nutrients, so they were able to take out the IV that was inserted through his umbilical cord stump on the day he was born. Now that he no longer has that line, we are allowed to pick him up and hold him at will. It has been awesome for us to have that new freedom and to be able to cuddle him a little better.

Patricks sats (aka the amount of oxygen saturation in his blood circulation) have been really good–we’ve even seen it get close to 100%. Depending on what the doctors see on the echo, they have been talking about us going home as early as Monday! We will definitely go home with a pulse ox monitor, but it sounds like we may only have to have it on periodically throughout the day. Patrick has a prescription for medication that should prevent heart arrhythmias (his heart rate has spiked a couple of times this past week), and we will need to fortify breast milk with special formula for a higher calorie diet.

Diet will be our main concern, I think, for awhile. We’ll have to try and get this kid to gain weight and grow. He doesn’t eat as much as they would like him too. Other than that, they are calling him a star patient and they seem really pleased with how he is doing.

Thanks everyone for your prayers, we’re getting excited to take him home!

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.

Second Opinion

It’s easy to forget that something as serious as a heart defect can be pretty subjective. Especially when observation of the problem can only be done via ultrasound. But depending on their experiences and what they see, the experts seem to come away with different assessments and expectations. Happily the surgeon, Dr. Nigro, and Beth, our fantastic Cardiac Nurse Practitioner, immediately told us this morning that they are pleased with where Pedro is at.

Even before saying hello almost, they reassured us that Pedro’s heart has only increased in size by about 10% over the last few months that they’ve been watching. While it is definitely enlarged, they estimate that it is only taking up about 52% of his chest cavity, which means his lungs have not been inhibited in their development. They anticipate that he won’t have the major breathing problems that some heart babies do at birth. AND they don’t think he will need surgery immediately. Their preference, in any case, will be to try everything else first to stabilize Pedro at birth and let him grow a little older before surgery.  Even if he is struggling, hopefully he can “eek by” until he is bigger and stronger. (Yes, the surgeon said “eek”).

In any event, we have a better idea of what to expect. Delivery should be normal, with a little extra monitoring, and just like other babies Pedro will be cleaned up and checked right there in the labor & delivery room (under a warmer). Then they’ll bundle him up for us to hold him! If he is doing okay, we should get a little bit of time with him before Braden goes with him to the NICU (which is on the same floor as L&D). He will be in the regular NICU for about 24 hours or so and then he’ll be transferred to the PCICU (Pediatric Cardiothoracic ICU). He’ll be in the PCICU about a week or week and a half. IF he does end up needing surgery right away it will be within the first week. In that case he’ll be in the PCICU for a few more weeks than he would otherwise.

Parent’s Guide

I signed up to be part of a Yahoo group for the Eller Heart Family Council and it is fun to be part of the community through the notifications/messages that members send out. This morning a “heartmom” sent a message about how she wished that she had known that heart babies can’t really wear zip-up footed pj’s.

I would never have thought of it, but because Pedro will need to have the pulse-ox monitor attached to his foot while he  sleeps, it just won’t work to have footed pj’s that zip up. Now I know not to buy them, and I can still exchange any we DO have for other kinds of sleepers since I haven’t washed any of the clothes yet. (I am pretty excited for that task, though…washing all of the little clothes and putting them away. He’ll be here soon!)

Anyway, I wrote to her (Melodie is her name) to find out about a parent’s guide that she mentioned in her note. She has written up Frequently-Asked-Questions sort of guide with tips and info like the pj’s advice.

If you are interested, you can look at it as well. I found lots of answers to things I’ve wondered about:

What To Expect Heart Parents

I am a little bummed about a certain set of pj’s we have that I’m not sure we can use afterall, but I’m sure Pedro can make up for the lost experience by wearing some as an adult, like his Uncle Jonathan…