Time for a Second Opinion

Day 16- Still here and still no answers. The team (cardiology, cardiothoraic surgery) were suppose to meet yesterday to discuss our Superman, however, a few surgeons (including Alexander's) was not in town, so the meeting will happen next Thursday. Since the meeting will be next Thursday, his Fontan will NOT be happening next week, nor will it be happening in the near future. As the days have gone on, I have learned that it would not be a good idea for Alexander to have his fontan surgery now. It is to risky and could cause lots of complications. There is also a rumor that Alexander might not ever be a good candidate for the Fontan (it is all based on his lungs: he needs low pressures in his lungs and healthy lungs) because of the current pressures in his lungs and the fluid that is around his heart. So it is now time for a second opinion. I have contacted Boston Children's Hosptial and I hope that they will get all of Alexander's information early next week and will have some information by the end of the week (hoping).

As of Thursday night, Alexander is back on the CV Acute floor. He is still having a few seizures but only staring spells. He is back on 1.5 liters of oxygen because when he becomes active, he struggles to keep his oxygen saturations in the low 70's. This was not what we wanted and it may tell us that the steroid was working. The steriod that probably contributed to Alexander's seizures on Tuesday.

Alexander was also tested for rhino virus again to see if the isolation can be removed (wearing gowns and mask around him)  and he does. :( This means he has to stay in his room and that we still can't get him walking in the halls to really get a an idea of how long it takes his oxygen levels to drop. Especially Since the rooms only allow him to walk for a short period of time before becoming distracted with something else. So Wes, I and the grandparents continue to be creative with keeping Alexander busy and moving around, so that everyone can get an idea of what his activity levels look like  To top it off, he has an IV in his hand (sometimes both hands) which makes it difficult for him to try to do so much independently-but he's doing as he always does-makes the best of it and figures it out.

So, to wrap up the few days: not much has changed. We are in pause mode waiting for Alexander do improve, waiting for the surgeons to decide what is the next best option, and waiting for BCH to gives us their opinion.  If you'd like to visit Alexander and are healthy, you may! For those of you that want to help with keeping Alexander busy, send me a message with ideas :)

Thank you everyone for your phone calls, text messages, positive thoughts and prayers. We all appreciate it so very much. <3