Still waiting

The OR called the waiting room around noon to say that everything was going fine. We just took a tour of the ICU where he'll go after surgery and briefly met our nurse and social worker.

So now we wait

The anesthesiology team took Magnus back to the OR around 8:30. We had the same anesthesiologist we had for the cath last week. Apparently, they spend about 90 minutes just putting in lines and otherwise getting him prepped for surgery. The surgeon is going to come talk to us before he goes in there around 10. Everything went pretty smoothly this morning. We requested that Magnus have an IV placed rather than getting gas anesthesia. Most kids prefer the gas, but Magnus is super calm with IVs and they talked us into doing the gas for the cath last week and it freaked him out.

We were told the whole thing would take somewhere between 6 and 10 hours. I'm guessing it will probably be closer to the 10 hours because they have to remove his stent as well as doing the Fontan. His pressures were actually so low, they're going to see if they can get away with doing a non-fenestrated Fontan! (If you don't know what that means, don't worry about it).

We just got presented with a big stack of messages people have sent us here, so I'm going to go read those now.

First case tomorrow

There was a cancellation, so we got bumped up to first case tomorrow (yay, less fasting time!) We're actually in Palo Alto now, we arrive at the hospital at 7 a.m., and they'll get underway around 8:30.

The preparations begin

I have written and erased the first sentence of this blog post 5 or 6 times now. I have so many thoughts flying around my head that it's hard to organize them into a coherent piece of writing!

Obviously, the news we got yesterday was really great. On a practical note, it is great, because I took the whole summer off of work (unpaid) to see Magnus through his Fontan recovery, and I didn't want to be stuck twiddling my thumbs all summer (or more likely dealing with the multitude of unfinished household tasks I've been putting off dealing with). It was also very stressful not knowing what our schedule would be like and not feeling like we could make any plans for anything. Now that we know, I can start planning!

But more importantly, Magnus's low pressures give us confidence that he truly is a good candidate for the Fontan. His previous pressures were right on the borderline, and his cardiologist had been pushing us to think long and hard about whether we really wanted to go for the Fontan. He's doing really well right now, but we knew that without a Fontan, over time, his heart function and ability to exercise would decline, and he would likely stop growing and would most likely require a heart transplant within 5-10 years. With the higher pressures, though, there was a substantial risk that the Fontan would not go well. There was a distinct possibility that the surgery would need to be reversed, that he would go into heart failure, or that he would otherwise come out of it weaker than he had gone into it. Those are all still possibilities with the lower pressures, but statistically we're in a much better situation now. The choice is now clear.

Many people have reached out to ask what they can do to help when Magnus goes in for his surgery. First and foremost, we love all those positive thoughts and prayers you've been sending our way. Please keep it up! It really means a lot to us and helps sustain us through the difficult times. If you are in the area and have time to drive to Palo Alto, we love visitors in the hospital (healthy ones, of course, please don't come if you are sick or have been around sick people). Being in the hospital is REALLY boring, and visitors are a wonderful distraction. I will be sure to keep the blog updated about when Magnus is feeling well enough to receive visitors. I anticipate that we will be in the hospital for 7-14 days and then he will be home from school for at least another month or so after that.

If you're not able to visit in person, you can also send a card to the hospital. The hospital has a service where you can send a free greeting card to any patient using an online form. Alternatively, you can send things through the U.S. Mail to the following address:

Patient [Magnus's full name here]
Lucile Packard Children's Hospital
725 Welch Road
Palo Alto, CA 94304

(Obviously, we will only be able to receive mail there while we are actually in the hospital, and again, I'm not certain what the exact time frame will be).

And although Magnus certainly doesn't need any more toys, he always loves to get new ones. His amazon.com wishlist can be found here (the default address for the wishlist is our home address).

10-11!

They're finished and we got fantastic news! His pressures are actually LOWER than at his last cath in March so he is definitely going to have the surgery Monday! We were very nervous that his pressures would be too high because they took him off one of the medications he'd been taking. His pressures needed to be 15 or lower to be a good Fontan candidate. They were 15 at his last cath, and are 10-11 today!

Cath day again

We're at Stanford, the cath is underway (I dropped him off at 11:45 a.m.) and now we're in the waiting room. It's kind of weird being in a new hospital where we don't know all the ins and outs of how they do everything yet, but we did see one of Magnus's old nurses from UCSF in the cafeteria just now.

Here are some photos:

Midnight breakfast is now a family tradition. I even made bacon this time!

Playing with toys in the waiting room. He built an airplane.

Waiting to go back to the cath lab in his bear feet and one of the Spiderman hospital gowns Grandma Ruth made. As usual, he was giddy to be the center of attention. In fact, he was so giddy that one of the doctors thought he had already had his dose of Versed. Nope, that's just his personality!

No, Maybe, Yes, Maybe

To update you since I last posted right after Magnus's cath: -We sought opinions on Magnus's case from Stanford, Children's Hospital of Philadelphia, and Boston Children's Hospital -We scheduled Magnus for surgery at Stanford -I drove down to Stanford last Friday to meet with the surgeon, but the meeting was not very productive since he had not seriously reviewed Magnus's case, but he did change our surgery date from June 2 to June 9 -We planned for me to take the whole summer off of work and Magnus to take the summer off from school And then today we got a call from our cardiologist saying that Stanford had discussed Magnus's case in conference and that some new concerns had been raised, sigh. Basically, although Magnus's last cath at UCSF showed that his Glenn pressures were in the Fontan-eligible range (though right on the borderline), there was some concern that his pressures during the cath were artificially low because 1. he is on medication for pulmonary hypertension, and 2. he has a big collateral vein that releases pressure from the pulmonary circuit. So, they want him to go off the PH medication immediately, and he will have to undergo another cath in 4–6 weeks. If his pressures go up without the medication, or the cath reveals that he is dependent on that vein for his low pressures, they may decide that he is not a Fontan candidate after all. Another reason for doing the cath is that the stent he had placed in his left pulmonary artery when he was a baby is now too small, and they would like to try to remove it if he does have the Fontan, although they are not sure if this would be possible. Thus, they want to try to get some better images of it during the cath. So, that's where we stand. Another cath and then probably his Fontan right afterward, although maybe not. It's disappointing to still be up in the air about whether we are going ahead with surgery on June 9th after we cancelled all our activities for the summer, but obviously it's more important to make the right decision for Magnus's health.