Tuesday, August 26, 2014

Deja Vu

Magnus is out of his cath. We got to go back and see him around 7 p.m. He was awake and asking for cookies (they didn't want to give them to him right away in case his stomach was still funny from the anesthesia).

The news we got from the cath was not great. His Fontan pressure is too high. It is 20. Optimal is 10–15. This is bad for the long-term viability of his Fontan circulation. The pulmonary hypertension doctor wants to be aggressive and put him on a new medication. Ordinarily, this would be no big deal, as he already takes many medications, but this is a medication that must be injected; in his case they are proposing that he get a subcutaneous pump like an insulin pump. Because he's small, it would go on his leg rather than his abdomen. Needless to say, I have some reservations about this.

It all kind of feels like deja vu. After his last open heart surgery, the Glenn, we went through something very similar. His Glenn pressures were too high. So, his doctors wanted to be aggressive and they put him on oxygen 24 hours a day and on Viagra. We were on oxygen for 7 months, it caused huge disruption in our lives, and it ended up not really doing anything. What did help was the Viagra (but it took a long time to start working), and also just growing and giving his body some time.

Anyway, my goal for tomorrow when I go back to the hospital is to talk to the doctors about alternatives and to try to do more research between now and then.

ETA: I forgot to mention that when they tried to drain the fluid from his "effusion" there was none. I mean, there used to be an effusion there, and the diuretics cleared it up and what had appeared to be remaining effusion was actually "pleural thickening," which I guess means thickening of his pleural membrane. I didn't think to ask about the clinical significance of that, if any. But at least he didn't get a chest tube.


  1. ugh. But at least yay for no chest tube.

  2. Good luck for you research, I hope you can find everything. I'm really touch by Magnus' story. Putting a candle for him tonight.

  3. Thanks for all of the details - Guess it's kind of good that they figured out he didn't have an effusion. Do let us know the significance of pleural thickening and whether this proposed treatment will fix that. Sending all good thoughts.
    Love, Mom and Dad