Angelman Syndrome, Life as an Angel: Full update on Brady.

Saturday, December 12, 2009

Full update on Brady.

Well I had a free minute and thought I would post a full update on what has been happening here over the past few months, but mostly this past two weeks. Brady started having seizures again back in September. The seizures were non convulsive and unlike any that we had seen previously. He did have one case of convulsive status, which was stopped with diastat. We have changed his meds around many times since then, and thought that we might be getting a handle on the seizures.
I contacted our doc recently and requested an EEG, since it had been a while since Brady had one. We took him in for the EEG, Monday before last. We came home, figuring that it had some abnormalities, but were in no way prepared for what would happen the next day.
Tuesday rolled around and while we were out, the doctors office called, but were closed by the time we got in. I was concerned that there were problems with the EEG, so emailed the neuro. While I was waiting to hear back, I got a call from my sister n law, who works with my hubby. She said that our doc had called an left a message on the wrong voice mail, her voice mail. It was only to confirm whether or not we wanted to cancel an appointment.
Shortly after I spoke to her, our neuro called us here at home. He had gotten my email and gone to look at Brady's EEG. He was nearly at a loss for words when he started talking to me. He said "Stephanie, its bad, really bad". He explained that most patients with EEG's like Brady's, were never sent home, but straight to the hospital. He told me that Brady was in non convulsive status,which meant that, although Brady appeared mostly normal, his brain was seizing non stop, around the clock. He said to let him make some phone calls and call me back. Within minutes he called back to tell me that he everyone at the hospital in Pensacola on alert, to be waiting for us and to head to the hospital ASAP.
So, we packed up and headed to Florida, again, not being prepared for what would happen. We thought that Brady would probably get some meds in the ER and be sent back home, but we were wrong. They gave Brady the meds and an EEG, which seemed to calm down a bit, then sent us up to a regular room for the night. The following morning, they done another EEG and things turned to chaos after that.
They transferred us to the Pediatric Intensive Care Unit and started Brady on the meds from the night before, plus a new one. He spent the night on these meds, but the EEG had no improved by the next morning. They decided that it was time to increase the meds, which would put him in a coma, and would require him to be on a vent. We waited outside for them to get him hooked up to the vent, but again, were not prepared for what we would see when we came back in the room. Our little angel had a vent breathing for him, feeding tube, cath, and EEG wires coming from his head. At one point there were 5 IV pumps hooked up to him. They nicked his kidney when putting in the cath, so his bag was filled with blood. After a while he started to swell, it did not even look like Brady at one point. He had to be suctioned frequently because they found that he had pneumonia. We struggled for several days with his O2 stats dropping and all of the fluid in his lungs.
After a while, the EEG began to look better, and they decided that it was time to wake him up and get him off of the vent, which was music to our ears; it could not happen soon enough. They reduced the meds and removed the vent, but left the cath and feeding tube. He slowly woke up and began to cough, gag actually. As I was talking to him, I noticed a tube in the back of his throat, asked was that supposed to be there. He had actually gagged so hard that he coughed up the other end of his feeding tube, so it had to be removed.
Even after Brady woke up, he was very weak and could not lift his head. He had not been able to lift his head from the time he went into the hospital, due to all the meds. We doubted our decision to have put him through all this, as he went into the hospital walking and laughing.
We finally got moved to a regular room on Tuesday night, after a full week in the PICU, and by Wed were released to go home. We were thrilled to be heading home, but terrified that it might be to soon. We rode the wheelchair out to the car, and I had to lay down in the backseat with Brady the whole way home, because he was just to weak to sit up. It has been a slow process, but Brady is getting back to himself now.
He has held his sippy cup today, held his head up, and even took a couple of steps by himself. We went back to the doc today, and the pneumonia is much better, but he has a yeast infection from all of the antibiotics.
At this point, yeast seems very minor, compared to everything else that our little guy has been through. We are just so thankful to have our little guy home. God has answered the many prayers that have gone up for our little man. I told Craig that God had a busy week, because there were so major prayers heading his way during all of this,lol.
Everyone has been so kind throughout this past week, I cant even find the words to say how much we appreciate all of the cards, prayers, thoughts, phone calls, etc. It has been an emotional roller coaster, to say the least.
Anyway, now that Ive written you guys a book, I am going to sign off, but not before I give a shout out to our two favorite PICU nurses, Christina and Summer, and of course our wonderful Neuro Dr. Suhrbier!!! Thank you guys for taking such good care of our little Angel.

posted by angelwings @ 12:34 AM 3 comments

3 Comments:

At 11:14 PM, Sandy Daron said…

I am sooo thankful that Brady and you are all back home!!! I pray that his strength will increase quickly and he will feel better!!

Love in Christ,
C.O.L.E.'s Foundation
(Caring Openly, Loving Eternally)
www.colesfoundation.com
Email: sandy@colesfoundation.com
24/7 Prayer Line 888-365-COLE (2653)

Sandy Daron
At 12:46 AM, emma said…

I hope Brady is back to his old self soon, best wishes,
Emma
At 7:51 PM, Anonymous said…

Glad to hear Brady is on his way to being his usual lil self,sending healing vibes and hope he is back to Running full out for the big day in just 7 more sleeps.Wishing Brady,Big bro Peyton,Mom and Dad and the rest of the family all the best in the new year and a very Merry Christmas!!!

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I am 11yrs old and I have Angelman Syndrome. I may have this syndrome, but I dont let it hold me back. I love life and live it to the fullest every single day. My mom says that our research organization, Foundation for Angelman Syndrome Therapeutics, is working really hard on a treatment or even a cure for me and my friends. I am thankful to have 25 words but I look forward to the day that I can carry on long conversations and talk so much that everybody has to ask me to please be quiet for a few minutes :) Anyway, mom says Im awesome and super funny and I have to agree,lol.

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