He's done it again!

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.

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.

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.

Admitted to 6 Long.

Today was Brayton's 2nd dilation since the last post. It didn't go as planned. This boy likes to surprise us. At his dilation before today's, they told us we could start coming bi-weekly! The last dilation went very smoothly, and despite the fact he hadn't had one in 2 weeks, he was easy to dilate, and it hadn't shrunk down. Progress. We were thrilled.

Today on the other hand, they told us it was difficult to dilate, and had constricted down a good amount. Afterwards, he could not maintain his oxygen, and after the xray, they determined that it looked like they had collapsed one of his lungs. The ventilator had only been supplying to one lung, instead of both, causing the other to slowly collapse. He was admitted today to the Pediatric Floor. I am so sad I can't be there with him, to hold him, and make sure he's okay. Daddy is there with him though so he's in good hands. I just pray that he gets better quickly.One more hurdle my boy will overcome though, just one more hurdle. He's tough, he'll do it.

A few new things.

Life sure throws some crazy things your way. It is up to us in how we face those things, and how we deal and cope. There has been some family issues that have come up within the last week, so I'm sorry if I've been M.I.A lately.

Brayton hasn't had a dilation in almost 2 weeks. The last one he had, he ended up with a fever, and throwing up the day afterwards. Just like the previous weeks before that. Strange coincedence if you ask me. I took him to the Dr's, and they put him on antibiotics, and albuterol 3 times a day. They said his lungs sounded really junky, more so than what is normal for him. They asked us to come back 3 days afterwards to have him checked again. No more fever or vomiting, but still really junky sounding and a nasty cough. He was put on lung steroids, and the local pediatrician he sees, contacted UCSF and recommended that surgery be postponed. UCSF agreed, considering the circumstances. Today, he is still sick. He is crankier than usual, runny nose, and still doesn't sound quite right. I'm getting pretty concerned, and wondering if his body just isn't tolerating the procedures well any more, or if this is just some fluke.

He is doing well other than that, and has been referred to a G.I. speciailist because our pediatrician wants to attempt bolus feeds, instead of continuous feeds, since we constantly find him (while he's sleeping) with his cord wrapped around him-body, neck, etc. It's scary to think what could happen if we don't check on him at the right time throughout the night if it happens to be wrapped around his neck.

He had a testicular ultrasound last week, and one of his testies, is still undescended, and the other is a sliding testicle. It doesn't stay in the scrotum like it should, it goes up and down, so both will be needing surgery. Poor little man! We will be scheduling that surgery as well.

I just hope he feels better soon. It's so sad to see your little ones not feeling well.

What a Day

Today was a mixed bag of emotions. I was finally taking my behind the wheel drivers test, but right before heading out the door, my husband calls. He was fired today. It's just amazing how many tests & trials we have been through these past couple years. I'm trying not to let it get to me too much, because my husband is a worker, and always finds something new when another doesn't work out. I'm trying to keep the hope that this won't have us down for too long. The trips for San Francisco-defintely compromised now, but we will do our best to make it work. Rick filed an unemployment claim today, and we have both been searching the classifieds, craigslist, and yahoo jobs for some opportunities. Tomorrow, turning in applications.

On a lighter side, I passed my driving test, and am now an official, legal, licensed driver. Feels amazing to have it-after 24 long years! I can get things accomplished now, and not have to depend on anyone else. It's about dang time!

We couldn't make it to Brayton's dilation on Monday. Not good, but we are trying to get it in somehow this Friday, and we would stay through the weekend and have next weeks dilation done on Monday like regular. We are waiting on the surgeon's call to okay this. Hopefully we can pull it off.

Well, off to snuggle with my husband and be grateful for the things we do have.

One more down!

Brayton had a dilation on Tuesday, and it all went well. They got him dilated up to a 38. The surgery seemed to go quickly this time, and even though he was cranky at first, he seemed to snap out of faster than usual also. I hate that he goes through all of this, but I sure do admire that kiddo for his strength. They said in the future, we will begin bi-weekly dilations, then monthly, and then see how it goes. I can't wait to get started with that. The surgery before last, they removed the tube from Brayton's nose, so it seems like things are taking steps in the right direction. He has been eating purees, and things like oatmeal. He's enjoying that for sure.

We had his 2 year check up yesterday, and he is doing really well. She was surprised at how he caught up so well, the only thing he is behind on is speech. He is talking but only single words. We are going to be referred to speech therapy, and for a hearing evaluation (although his hearing has proved to be fine in the past.) He also needs to get a testicular ultrasound to determine if the left one has come down or if he still needs surgery with urology. Might as well get that taken care of while we're going down there weekly.