Friends and Family -
I'm not sure where to begin, as we only tasted four sweet days of freedom, and they weren't very "free" and they have come at a price. You know we are not medical professionals, and are limited to only knowing something is wrong with Braden when something becomes outward in it's manifestation, or his pulse-ox tells us he is not oxgenating like he is supposed to.
What I didn't tell you, was that when we put our ventilator on it's internal battery power, and we were loading Braden in the car to leave the hospital, it was not working properly, and we had to bag Braden for about 10 minutes before we discovered that his oxygen line was not turned on (however, the vent should still have worked properly, as Braden is NOT oxygen dependent). The ventilator seemed to not be working correctly, and just as we were about to give up and go back into the hospital (after about 20 minutes of alternate bagging and ventilation) the machine seemed to right itself and Braden seemed fine. Since we were told the machine had 2 hours of internal battery at max settings (and Braden is on minimal support settings), when the battery was flashing half full, we had to decide: back in the hospital or race home for power. We chose to race home, and once we got him plugged in and set up at home, he seemed to be just fine.
As Monday came, we discovered that the machine still would not function properly on internal power, but plugged into the lighter - all was fine. However in the coming days, as Braden would be transitioned from the home to the car, or the car to the daycare, or the daycare to the car, the machine would consistently not provide enough support for Braden - and we would end up in situations where we would have to support him with bagging until his machine would "catch up"... it seemed it had difficulties in the transition process.
Tuesday he seemed more sleepy than usual, but we thought it might be related to the incoming of the cold front, adjusting to our new routine at home, or possibly just catching up on some quality rest he couldn't get in the hospital. But when Wednesday came, and he was even more sleepy and unresponsive like a rag doll, we got a little worried. When that afternoon he began taking big deep recovery breaths twice a minute, we thought he needed help with a breathing treatment - and it did help for a few hours. But that night when the deep recovery breaths returned twice a minute and he was rag-dolly, we knew he needed help.
As soon as we had arrived in the ER, it wasn't two minutes in that transition that Braden started to drop his sats again and I had to yell for an ambu-bag to help him breathe, and they rushed us right back, and got us put on a hospital ventilator. After nearly 5 hours on the hospital vent, they decided to take a blood gas... and his CO2 levels were through the roof at 81 percent!! His chest x-ray was clear, probably the best one he's ever had, so we hope we won't have to be fighting a pneumonia too.
Since we are not medical professionals, we rely on them to care for Braden. In retrospect, mommy and daddy when reviewing his settings, it became obvious that this vent was not set for minimal life support should Braden suffer a neurological episode or become apnic. Daddy also discovered as we put a test lung on and tried to mimic Braden's breathing on the hospital vent, that Braden would actually have to FIGHT the vent to breathe over it, and he was on these settings for two weeks... our little man was probably fighting the ventilator for that long!
So here is the bad news... once his body gave up, the minimal settings were not enough to support his life (the whole purpose for the vent). We believe at one point he was put into a state of constant seizure - so they put him on an EEG and saw lots of seizure activity - but Braden has always shocked technicians who have never seen his EEG before. So they attempted to treat him to bring him out of this "status epilepticus", and he seemed to respond.
Yesterday we repeated and mri to compare it to the one we had 2 weeks ago, to see if he suffered any brain damage or swelling, and he has both. The swelling is nothing they are concerned about, as it occurred with the new damage, so now we are focused on the outcome of the new brain damage. He does not have NEW areas of brain damage, but the previous areas that were damaged by the suspected hypoxic event near birth have grown in size and have seemingly progressed. There is no definite as to what this will mean for Braden, or if it will have a profound, if any, effect on him.
Some hopeful portion of this story, is that Braden has seemed to make his way closer to his pre-ventilator-incident-state. They were not planning to sedate him for the mri, but as soon as they started making their way there, he started kicking about. And then he messed up the whole bed with a dirty diaper. They put him in the mri machine and he started kicking his legs again, and they tried to calm him by rocking him. That lasted about a minute. So they ended up sedating him for the mri - doesn't that sound like our regular, fighting-spirit, spunky Braden? To me, that's a good sign.
We will AT LEAST be forcing a family meeting with the pulmonologist who is ultimately in charge of the vent settings, the intensivist who sent us home on the wrong settings, a manager over respiratory therapists (because at some point they should have recognized the settings wouldn't be quite right if Braden needed full support of the vent), and additional hospital medical personnell. We will also make sure our DME RT (Durable Medical Equipment company's Respiratory Therapist) - they provide the ventilator - is also there, and if we can make it happen, a representative from the manufacturer as well. I've done enough crying for now about the situation, and now I am mad. Brad, bless my loving husband for not only having to go through this with me, but he also has to manage me and my angered opinions, so I don't make drama and Braden gets what he needs right now - he has been my rock once again.
Pray for us, we have really been through some difficult moments and hours these past days, and need all the support we can muster up. We know ultimately Braden is in God's hands, regardless of human error, and that His will shall be done. Pray he gives us the strength to cope with whatever the outcome may be.