Daily updates are done on Brooks' facebook page at https://www.facebook.com/pages/Brooks-Dillard/262695097206545
It will be far easier to post all updates in one place. Thank you for your support!
They say that no news is good news and today fits that phrase. There won't be any major news 'til Wednesday after the cardiology team discusses the little guy's situation.
Swelling from fluid retention is almost completely gone and Brooks is handling the new medication much better than the morphine. His lungs are still improving -- getting all that gunk out from the cold takes time. The lobe that had collapsed is the worst off right now but its improving as well.
The pace of things is starting to slow down now and everyone seems to be settling in for the long wait. That, by itself, is rather scary as it helps drive home the reality of how long he is going to be there.
There is always a bright side though. We are thankful Brooks is no longer fighting for his life
thanks to the ventilator and constant care. He is still in pretty serious condition but also really stable -- the chances of his condition worsening overnight are extremely slim. There are a lot of families there at the hospital that can't say the same thing.
Periodically we also get peeks of normalcy from Brooks even through the drugs they've had him on. Just like before he went to the hospital, he hates diaper changes with a passion but gently rubbing his little head settles him down.
Finally got to talk to the cardiologist and have more information. Information is a double-edged sword though: its great to finally have a few more answers but it can provide a huge reality check. We also got pictures from the CT and will post them later when we can add explanations.
As we posted before, the two aortic arches are wrapping around the trachea and esophagus just above where the trachea splits to go to the lungs. As a result, both his trachea and esophagus
are severely restricted in their ability to expand. This will be clearer when we post the pics later. One short term result is that his breathing tube will most likely remain until after the surgery.
We also got to talk a few surgery points as well. The earliest the surgery would take place would be late this coming week but more likely sometime the following week. We will know more after a meeting of the cardiologists and cardiac surgeons on Wednesday.
We then started talking actual surgery details and this is where the reality check happened. The surgery itself is fairly simple (as far as cardiac surgeries go) but to get access to the aortas, his chest cavity will have to be opened...the equivalent to full on open heart surgery. He
will also be on a heart/lung bypass machine for the surgery.
Long term care was another reality check too. He could have an easy time and be completely healthy shortly after surgery. He could also need serious ongoing respiratory assistance via cpap or worse. A tracheotomy could also be necessary to allow for a beathing tube for that respiratory support.
All of the nurses and doctors here have been absolutely fantastic and we are so happy that Brooks is finally at Children's to receive the care he desperately needs.
Visiting at the hospital with little Brooks....
He has been moved to a crib; he was a little too big for the infant warmer they had him laying on. He also hasn't had any new episodes of stopping breathing since our last visit but is still very dependent on the ventilator. The ventilator is being used primarily to maintain a positive pressure in his airways so that they don't spontaneously collapse due to the crowding from the aortic arches.
He is also down to only getting morphine on a constant basis and is back to getting formula finally, although it is through a feeding tube. He had been getting saline drips to keep him hydrated and its resulted in him swelling up a lot. Getting back on formula will help the swelling tremendously.
We got to hold him for a little bit today but the effort required to move him from the bed to our arms with all the attached tubes and hoses was immense. It also served to reinforce just how sick he is. Each time he was moved the nurse had to disconnect his ventilator quickly and he immediately started having issues breathing. It was extremely stressful experience for everyone.
We we're hoping to get to talk to the cardiologist today but they won't be around until tomorrow morning so the answers to many of our questions will have to wait until then.
The outpouring of support (both emotional and financial) from friends, family and even
people we don't know has been immense, heart warming and extremely appreciated. Thank you all so much...