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Friday, July 29, 2011 |
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Well, now that I have some downtime, thought I would post an update about whats been going on here. Its been a wild month. About a month ago, we began to notice that Brady was not acting like himself. He seemed to be dull and showed very little emotion. The plan was to go get an EEG once we returned from a week long vacation. The last day of our vacation, he woke up in a strange daze, which was actually a seizure. He and I left early and headed home, where he began to gag and vomit the whole way home. Within the next few days things progressively got worse.
I called my husband at work on Monday afternoon and said that we had to take Brady to the doc, something just wasnt right. On the way to the doc Brady began to have visible seizures. By the time we got to the doc, he was seizing about every minute to two minutes, sometimes more often. The Ped contacted the neuros office and we all agreed that we would take him by car to the hospital in Pensacola. We drove an hour and a half, with him seizing the whole way. The magnet had no affect on his VNS and diastat did not work. Once we got to the ER, the docs gave meds that did stop the seizures and he was admitted. He seized for nearly 4hrs solid. He stayed in the hospital for about 3 days and appeared to be seizure free.
The next week, he was still acting strangely so we knew that something was not right. I arranged to have an EEG done in Pensacola on Tuesday. After the EEG was done, the doc came in and sat on the EEG bed. We could tell by the look on his face that things were not good. He told us that he "did not have anymore tricks in his bag", he did not know what else to do. Brady was in full blown nonconvulsive status at this point and we have tried nearly all seizure meds, as well as the VNS. As some of you remember, he was placed into a coma and on a vent 2yrs earlier for this same reason.
So the ambulance and firetruck came to the office to transport Brady to Sacred Heart Hospital. They put Brady on the vent and into a Pentobarb coma. They told us that they had arranged for the jet to come from Children's Hospital in Birmingham to pick Brady up and that hopefully the docs there could help us find treatment options.
The jet picked Brady up the next day and we drove 4hrs to be with him at Children's. When he left on the jet, he was out of status; however, when we got there, he was back in status. They began to administer Versed and it seemed to work. The next day Brady went back into status, so they began to administer dilantin, which had no effect.
The next step was to double the versed, which was a massive dose, but it worked. Once he came out of status for an acceptable amount of time, they began to discuss when to remove the vent and bring him out of the coma. The next day when they allowed us in, he had been taken off the vent, but was struggling to breathe. We tried to comfort him, but he was in obvioius respitory distress and no one knew why. We could hear a loud whistling sound when he tried to breathe in and his chest appeared to collapse as he gasped for air. He was visibly fighting, sweating, and his color turned grey. His blood gases were very high, so the docs began to talk about putting him back on the vent. They did have the ENT team come up and look down his throat with a light, to see if they could find the source of his breathing troubles.
The team discovered that not only was Brady's airway very swollen, but that he had granulomas on his vocal chords. He was placed back on the vent and scheduled for surgery the next day. The surgeon said that the granulomas were caused from the tube and that they were def the source of the problem. Not long after surgery, he was taken back off the vent and done great. It didnt take long before he was back to his smiley, flirty little self. We were later transferred to the floor and released a day later; we got home yesterday.
All of the doctors and nurses were amazing throughout this experience. If one thing had been different, I dont know what the outcome would have been. We are truly blessed and humbled to have such an amazing medical team, family, and friends. The support that we have received throughout this 9 days has been amazing! Through God's mercy and grace, and the prayers of so many, we are back home as a family, where we belong. Brady is weak, but getting better and even walking some. Were just taking it day by day. Will post more updates later.
Time to snuggle with my precious boy! Please dont forget to pray for those who are sill suffering tonight. Many Angels are having seizure troubles and there is an amazing family that we met in Children's who continue to battle kidney failure in their precious 2yr old little boy; so keep all of these families in your prayers. Also, DONT FORGET TO CLICK THE LINK TO THE LEFT OF THIS PAGE AND VOTE FOR FAST TO WIN 1.25 MILLION DOLLARS FOR ANGELMAN RESEARCH. We are so close to a cure as we already have a cure for Angelman in a mouse modes; with your help we could be even closer. Good night all! |
posted by angelwings
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11:35 PM
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Friday, July 15, 2011 |
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Vote for FAST!
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| I added a new button so that you guys could go and vote for the Foundation for Angelman Syndrome Therapeutics (FAST)to win $1.25 million for Angelman research! We are so close to a cure, this money could be just the push that we need. I hope that you will take 30 seconds out of your day to support our cause. I pray for the day that we never have to fear losing our little man because of seizures. Please help us get there! |
posted by angelwings
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12:12 AM
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Thursday, July 14, 2011 |
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Were back!
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Hey guys, sorry for being absent for so long, but we are back now!! Alot has taken place over the past few years... I just graduated last Sunday, so will have more time for updates now. Brady is doing well, despite a recent setback.
He has been acting strangely for more than a week....eye rolling, droopy eyes, being tired, and then obvious seizure activity started. Sunday we were winding up a week long camping trip. He woke me up chewing on a block, drooling, unresponsive, wild eyed, and totally out of it. We knew that it was a seizure so we used his VNS magnet and got him out of the seizure after about 30 minutes. He and I headed home ahead of everyone else, but he started to gag and vomit on the way home.
Once we got here, he seemed to calm down so I put him down for a nap so that he could get some rest. We made an appointment with the neuro for Tuesday, but Monday things progressively got worse. He slept until nearly 1pm that day. When I went in to check on him, he was very dull acting, just didnt seem like himself at all. I had a sinking feeling that something bad was going to happen, so called my hubby at work and told him to come home right away.
We called the ped and explained that we didnt know what was wrong, if it was neurological or if he was just getting sick, but that he needed to be seen right away. Minutes later we headed out to the peds office and while on the way, we saw an obvious seizure. He began to roll his eyes to the left and then his head followed. He limbs became stiff and he was unresponsive. The seizure lasted around a minute and he had stopped when we got to the doc. We signed in and were taken straight back to our doctors personal office, where Brady began to have drop seizures and then more of the seizures that we seen in the car.
He was seizing about every minute to two minutes at this point. The nurse and doc got on the phone with our neuros office and arranged for us to head straight to Pensacola hospital. We drove for an hour and a half with Brady seizing the whole way. Once we got there they took him straight back and started giving him medications to stop the seizures. Around 6pm the meds kicked in and he began to calm down. We stayed in the picu Monday night and all day Tuesday and then were transferred to a regular room that night. We never found out exactly what caused the seizures to breakthrough after more than a year of being seizure free, but did find out that he is not in nonconvulsive status like before. It was a pleasent surprise to have the medications work so effectively and to not have to put him back into a coma and on a vent.
At any rate, we got home on Wed afternoon and things have been calm thus far. We would like to thank to many people that sent up prayers and thoughts for our family during this time. God truly worked a miracle and for that we are so thankful!!!
Its time to hit the hay for now. But I promise to update much sooner than before. Have a blessed night!! |
posted by angelwings
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2:07 AM
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