Since my last post, there have been a lot of ups and downs, but once again...my sweet boy has proven to everybody that he is a fighter! He has a lot to live for, and people who love him more than anything, and he pulled through it all. After almost a month on the ventilator, he is off of the ventilator, better yet...off of oxygen altogether! They performed a spit fistula on him, and after that he seemed to improve slowly, but steadily. He is still in the hospital but was taken off the nasal canula yesterday and has been doing great without the oxygen. He only has 1 chest tube in place, the other was removed, and is only on one antiobiotic. No pain meds anymore. They weaned him off of all of the narcotics (methadone, phentanyl, versed, etc) They let him wake up right before Christmas. The best Christmas gift we could have ever asked for. He is on the regular pediatric floor now, and no longer in the PICU. All of the surgeons and Dr's are pleased with his progress, and surprised that he made it. He was so extremely sick that everybody thought the worst. Thankfully he proved them wrong. I can't wait to be home, and have all of my family together again. He will need surgeries in the future to try and reconstruct an esophagus out of intestine or something else, but the surgeons said we'd discuss that further at a later date.
He is smiling, laughing, and interacting with us. He is our miracle, and I thank God for this strong, sweet man every day. I am also so grateful for all of the wonderful friends and family who have supported us during these times, the prayers, the gifts, the friendship, the love. All of it. I couldn't have asked for more.
Friday, December 31, 2010
Thursday, December 9, 2010
Keep going baby!
Brayton is doing better today than yesterday. His vent is on 60, and his oxygen is looking great. He is at 94 at this moment. His Co2 levels are still high though but as long as his sats look good, then they can deal with that. He is still in critical condition, on dialysis, and receiving a lot of help with breathing but improvement is improvement and I am happy to take it! Their concern currently is that since he's been on the ventilator, going on almost a week...they are worried about the damage it is doing to his lungs. They are talking about the possible esophageal surgery in a week or two, as long as Brayton stays how things are now. Fingers crossed.
Wednesday, December 8, 2010
Havent updated in a while
It's been a long time since I've last updated. Things were going pretty well with Brayton and life was moving forward.
Brayton had a stent placed in Sept to help his esophagus remain open, and to help with the weekly SF trips. This last Friday, Brayton was lethargic and feverish. We took him to the pediatrician, and his oxygen levels were in the 50's. An ambulance was called, and he was placed on oxygen immediately. He was taken tot he emergency room, and put on a nasal canula and an oxygen mask. He was non-responsive, and things were not looking good. San Francisco was called, and they sent a flight team up to pick him up.
By the time they got to the hospital, they needed to place him on a ventilator. He has been here since, and what caused all this, was that the stent they had placed eroded, and went through his esophagus and into a lung. He had to undergo surgery to place chest tubes, and to remove the stent. He has been touch and go since then, and the surgeon had told us it was a very real possibility that he may die. He is very sick. His kidneys are failing so he was put on dialysis, which seems to be helping. He has a hole in one lung from the stent, his esophagus is completely ruined and probably will have to be reconstructed a long time from now, if he makes it through everything. There was a very bad infection in his chest due to the perforation. He is on an oscillator (like a vent but normally used for preemies/small babies), receiving blood transfusions, and on many medicines. They told us he is the sickest baby they have in the PICU.
Please keep him in your thoughts. I can't imagine my life without my boy. He's strong and we are hoping he will get through all of this.
Brayton had a stent placed in Sept to help his esophagus remain open, and to help with the weekly SF trips. This last Friday, Brayton was lethargic and feverish. We took him to the pediatrician, and his oxygen levels were in the 50's. An ambulance was called, and he was placed on oxygen immediately. He was taken tot he emergency room, and put on a nasal canula and an oxygen mask. He was non-responsive, and things were not looking good. San Francisco was called, and they sent a flight team up to pick him up.
By the time they got to the hospital, they needed to place him on a ventilator. He has been here since, and what caused all this, was that the stent they had placed eroded, and went through his esophagus and into a lung. He had to undergo surgery to place chest tubes, and to remove the stent. He has been touch and go since then, and the surgeon had told us it was a very real possibility that he may die. He is very sick. His kidneys are failing so he was put on dialysis, which seems to be helping. He has a hole in one lung from the stent, his esophagus is completely ruined and probably will have to be reconstructed a long time from now, if he makes it through everything. There was a very bad infection in his chest due to the perforation. He is on an oscillator (like a vent but normally used for preemies/small babies), receiving blood transfusions, and on many medicines. They told us he is the sickest baby they have in the PICU.
Please keep him in your thoughts. I can't imagine my life without my boy. He's strong and we are hoping he will get through all of this.
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