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!!

Busy with Blankets

As I mentioned in a prior posting, our friends, The Pearson's, are doing a service project in memory of their son, Ian, who passed away in November after heart transplant surgery. We are collecting boy blankets, girls hair accessories, and craft items for Primary Children's. Also, hygiene items and housekeeping supplies for Ronald McDonald House Charities. We decided that we would do all we could to help out. So we have been busy making blankets. Simple fleece blankets with the knotted fringe. They are inexpensive and quick to make. We'll also gather craft items. Its really nice to know that all this hard work will pay off when we donate the items in May. It will be fun to see how many of the things we donate come back around and are used by Brody during his future stays. We will collect items until Brody returns to Primary's for surgery May 8. Anybody who would like to help in any way, please just let me know. Thanks! And for more info on the project, you'll find details on the Pearson's blog. There is a link on the left side of this page. :)