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).
6 months ago