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Wednesday, December 30, 2009 |
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Update
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Well its been a little while since we updated, so thought I would do so in between coats of paint.
Brady is doing well, 100% recovered for his ordeal a few weeks ago. He has been being a little stinker, but whats new I suppose. He has been very interested in signing lately; he is now signing hungry all the time, he never gets full,lol. We are now working on the sign for sorry and stop, he is doing well, but not quite there yet.
Yesterday Brady woke me up pretending to be "Poocasa", as he was painting my bed and back with poo :( After changing the sheets we decided to head to town, on the way he to no surprise, decided to climb out of his seat belt and try to get up front with me. When he was trying to come through the center of the front seats, he started falling, so naturally I reached to catch him. When I reached to catch him, I looked off of the road for seconds, swerved over and hit a garbage can, and he fell anyway. I was worried that he had really hurt his arm because he was holding it crying. After I pulled over and got in the back seat with him, he started laughing, much to my relief. I then got out to check out the damage to my car, some scratches and big dent in the passenger door. The good thing was that Brady did stay in his seat belt for the rest of the day, it really scared him,lol.
Today has been a good day, but a busy one of course. Brady woke me up this morning, sitting on my back, riding the horsey,lol. He has become quite the early riser these days.
Later on today, Brady decided to pour a gallon of paint down the drain and paint himself, as well as taste of the paint; all while I mopped. He then decided to walk all around the bathroom leaving Brady paint prints everywhere. It has been a wild one, but I wouldn't have it any other way. So thankful to have all four family members home and well.
Were going to be working on getting insurance to pay for a new car seat for him. Meanwhile some very caring people decided to purchase a standard seat for Brady. This seat will hold up to 100lbs, so Brady is well under that mark. But it only holds up to 50" in height, and Brady is already 47". At least this seat will buy us some time while we appeal our insurance for a special seat. Now we just have to purchase Angel guards to go over the seat belt latches and we should be set, I hope.
Well gotta get back to painting while my little monkey is sleeping. Will post more later. Hope everyone has a fabulous New Year!!! |
posted by angelwings
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11:36 PM
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Saturday, December 12, 2009 |
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Full update on Brady.
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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
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12:34 AM
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Monday, December 07, 2009 |
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Were back!!
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Well, did you guys miss us?!? We are finally back. We had some security problems with our blog and was unable to log on, since July, but we are back now, with tons of updates.
At the moment, we are sitting in Brady's hospital room, exhausted and sleep deprived; so this will be a short update.
Brady went into non convulsive status, but we didn't find out until Tuesday of last week. We came into the hospital at 10pm that night and have been here ever since. It has been a roller coaster ride this week, but we think things are looking up. Brady has been on a ventilator, and in a drug induced coma, but is now off and awake. They woke him up yesterday, and he has just in the last 5 minutes, come off of oxygen. He coughed up his feeding tube last night, so all that is left is the catheter and IV's. He is not very alert right now, as the meds are still keeping him very sedated. Hopefully we will be sent to the floor soon, were in the PICU now. Our favorite nurses are leaving tonight and wont be back for a while, so were hoping to move out where both Craig and I can stay in the room with Brady. Craig is sleeping at the Ronald McDonald house, and I am sleeping on a little couch in Brady's room.
Anyway, were waiting now to here back from the latest EEG, to see how bad the seizures are now, hopefully they wont be to bad. He has had several EEGs, and one continuous while he was on the vent, and they continue to improve.
Anyway, I am exhausted, and its almost time for us to get kicked out, so I will post a better, more detailed update later. |
posted by angelwings
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5:54 PM
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