Brody is more alert this morning and his pupils are reacting faster to light. He is tracking more (moving eyes left to right) instead of that absent stare where he seems to look through you. His movements seem to be mostly involuntary at this point...similar to when you are lying in bed nearly asleep and you suddenly kick or have a spasm. As for his kidneys, the function appears to be trending downward still. We will meet with Nephrology to discuss possibly starting dialysis and/or begin screening family for donor matches. We are less than 48 hours out since the horrific event and we just don't yet know how substantial his injuries really are. We are hopefully pessimistic. And the most unsettling thing is that we still do not know what caused the event to begin with. A blockage in his trach... a severe asthma attack... a seizure? Although Joss did everything exactly as we are trained to do, he still blames himself and is really having a hard time. Prayers all around!

Doubtfully Optimistic

CT Scans last night showed no significant damage at this point. However, it could take up to 72 hours before we know the full extent of his injuries. He is sleeping a lot without sedation which concerns us. But he is somewhat responsive to being touched and things. He occasionally opens his eyes and he does move his extremities. As of this morning, his pupils are finally responding to light, dilating appropriately. Like I said, we really just don't know what kind of damage if any has been done to his brain. As for his poor kidneys... Not so good. His kidney function has decreased greatly and we are discussing starting dialysis very soon if things don't perk up. He is having a blood transfusion right now and we hope that will help him to be more conscious. They say no news is good news. I guess we'll see.

Horror

Yesterday was the most horrific and traumatic day of our lives. The events keep replaying in our minds. Haunting us. Tormenting us. We had been at Primary's for a regular check-up. On the way home, we stopped in Provo to get some food to go. I went into Cafe Rio and when I came out, I could hear Joss' piercing screams. I ran to his side to find that Brody had apparently began choking. He tried to suction and couldn't get into his trachea. He immediately pulled Brody from the car and layed him on the snowy asphalt to do an emergency trach change. The trach went in briefly and came back out. We called 911 and worked together to do CPR the best we could. He went into full arrest. We worked on his lifeless blue body desperately. No heart beat, no breaths for upwards of 7 minutes before he was finally revived by paramedics at Utah Valley Hospital. He was soon transported by air back to Primary's. We were sure he wouldn't survive the flight. We contacted our families to come say goodbye. But when we arrived in the PICU, he was semi-conscious and fighting for life. There is much trauma to his body and only time will tell what his neurological state is. All we can do is PRAY!

One day at a time

Well, for now things seem to be going ok. As well as can be expected. As of Friday, Brody's labs looked slightly better than the previous few weeks. A glimmer of hope. Kidney transplant is inevitable. But if we can hold off a little longer until we can get him off of the ventilator, it would help his chances significantly. And when the time comes, our family will have to relocate to be closer to the hospital. Until then, we'll carefully monitor everything he eats and administer over a dozen meds several times a day. One day at a time.

Talk about Transplant

Today Brody had a scheduled visit to the Renal Clinic. We found that despite all our efforts, Brody's blood pressure is still very high. Today was 150/100. And that his renal function labs keep coming back with critical values, meaning his kidney function is not improving. In fact, it is worsening. In January we were told that they estimate Brody's kidney function to be about 30-35%. Today it was estimated at 25%. That great of a loss in under three months. I asked them at what point do they generally start dialysis. They said usually at 20%, but with Brody and his other health issues it would be in his best interest to skip dialysis and go straight for transplant. And with the downward trend in his kidney function, I think its coming fast. To say I'm terrified would be an understatement. Transplant is difficult enough for moderately healthy children. Let alone a child with a myriad of other serious health complications. We know through our research of Jeune Syndrome that over 90% of these children die from Respiratory or Renal failure. Brody has both at the same time. But we've come this far and there hasn't been a mountain we haven't climbed. We're not giving up without a fight!!