We finally got to hold Brayden again!! We went to the hospital last night and almost stayed the night. We couldn't get enough!! He is completely off the feeding tube and all IV's now. The only thing we are waiting for is for the Phenobarbital level to be lower in his blood. They told us that it wasn't going to be drawn again until Monday, so we will be here for a few more days. I would rather have him here in good hands then go through another episode at home. So we will just pray and be patient. We are still a little cautious because he still has the possibility of having more seizures as the dosage drops.
The kid can definitely eat though. When we are not there the nurse is giving him about 100 cc of milk. I don't think he is going to have a nutrient problem. Most babies in the NICU are on a 3 hour feeding schedule. Not Brayden. He is what they call on demand. When he wants to eat he can. So that is a good thing.
Jon and I took about a million pictures of him last night. He was pretty animated with us once he woke up. We have been at the hospital all day again today. Hopefully tomorrow morning before we come here I can post the pictures. I don't think Brayden is too fond of the paparazzi, but he better start getting used to it.
Grandma and Grandpa W. drove 3 hours each way to see Brayden again today. They only stayed for a couple hours, but it was great to have them come visit again. Brayden was definitely excited as he was awake for most of the time they were here. Grandma O. is coming to visit tomorrow.
As for Jon and I, we are doing the best we can. We are hanging in there, trying to keep a positive attitude about everything. Jon has been amazing through all of this. We are just physically and mentally exhausted from all of the events this week. We are trying to get some sleep. Right before we lay down for bed and the second we wake up in the morning we are calling the nurses to make sure he made it through without any problems. So our minds are constantly on him. It definitely helps that we have so many people thinking and praying for him. It lifts our spirit to know that we have such great support. We can't thank everyone enough.
Saturday, November 15, 2008
Friday, November 14, 2008
Neurologist
We met with Dr. Ritacco, the pediatric neurologist early this morning. Since the moment we were told we had to meet with this guy, people have done nothing but praised at how great of a doctor he is. He came in and did a full evaluation on Brayden. He moved him around trying to check out his muscle tone and strength. He checked to see if there are any deviations between the right and left hand side. After the full evaluation he went and reviewed his chart and all the data that was collected from the electrodes. After he did his evaluation, Dr. Ritacco met with us for about 30 minutes explaining the situation and let us ask as many questions as we wanted to.
Dr. Ritacco said the good news is that Brayden has not had an outright seizure since they started the second medication on him a little after midnight on Wednesday morning. He did have a few small abnormal brain activities, but nothing too serious. He still has a large dose of phenobarbital in his system, which is anti seizure medication right now. The goal is to try and regulate this level so that it is not too high, but enough to help him prevent any more seizures. They are trying to achieve what they call a maintenance dose. Right now his blood level of this medication is at 62, and they would like it to be between 25-40. So he is a little on the high side right now, which could be blocking some seizures.
Why the stroke occurred? We don't know and we will never know. They don't know when it happened or why. It just happened. The doctor did say that it was a small stroke. What happens is that the area gets very irritated with swelling and blood. The most important time period is the first 72 hours after the stroke has occurred. So we have cleared that time period with Brayden. The damage is done in the brain and the seizures are just a side affect of the stroke. Every time he seizes, there is no additional damage being done to his brain. Unfortunately when he does seize we just have to let him seize. This is going to break my heart, but at least we know it is not hurting him.
The area in the brain in which the stroke occurred was the left parietal lobe. In adults, this area normally controls motor skills on the person's right side of their body. Although this is the case in adults, we still don't know how Brayden will be affected. He noted that a baby's brain is like a clean slate. Nothing is completely defined yet other than what they need to do to eat and breathe. So if there is something in that area that is missing, the brain could compensate for it in another part of the brain. It just re-wires the area to make up for the loss.
Dr. Ritacco thinks that Brayden's outlook looks good, however we will just have to wait and see when he grows and gets bigger if there any signs of difference between the right and left hand sides. He is going to have to be on anti-seizure medicine initially for 3 months. What they do is in about a month and a half they hook him up again and monitor his brain activity. If there are no significant deviations, then we would slowly ween him off the medication. If there are problems then he would stay on the medication. Dr. Ritacco thinks that there is a good chance that he will just out grow the seizures. At this point Jon and I are optimistic about the outcomes, but of course we will be very cautious going forward with him. He is going to have many checks along the way. He will also have a full evaluation done in a few months with PT and OT to see if we need to start some therapy on him now. So even if there are some physical side affects we can catch them early.
Going forward, Brayden needs to have a lower level of anti seizure medication in his blood. They draw his blood once a day to check to status of that. Once we reach a good level, then we need to maintain that level. So he will be in the NICU for a few more days until all of this has happened. We also have to make sure he is off all of his IV's and the feeding tube. They started to feed him through a bottle late last night and we got a report this morning that feeding will not be an issue. As long as he was awake he can have the feeding through the bottle and as much as he wants. Well, little piggy at different feedings 40 cc, 50 cc, and the last one was 60 cc. Keep in mind they were only feeding him 10 cc when they started the tube on Wednesday. He is going to be a big strong boy. We just a call from the nurse about an hour ago that they have taken him off all the electrodes so we will finally be able to hold him!!! I am finishing this up and we are rushing over there to hold him for the rest of the night. Thank you for all the great thoughts and prayers this week. They have definitely helped out!!!
Dr. Ritacco said the good news is that Brayden has not had an outright seizure since they started the second medication on him a little after midnight on Wednesday morning. He did have a few small abnormal brain activities, but nothing too serious. He still has a large dose of phenobarbital in his system, which is anti seizure medication right now. The goal is to try and regulate this level so that it is not too high, but enough to help him prevent any more seizures. They are trying to achieve what they call a maintenance dose. Right now his blood level of this medication is at 62, and they would like it to be between 25-40. So he is a little on the high side right now, which could be blocking some seizures.
Why the stroke occurred? We don't know and we will never know. They don't know when it happened or why. It just happened. The doctor did say that it was a small stroke. What happens is that the area gets very irritated with swelling and blood. The most important time period is the first 72 hours after the stroke has occurred. So we have cleared that time period with Brayden. The damage is done in the brain and the seizures are just a side affect of the stroke. Every time he seizes, there is no additional damage being done to his brain. Unfortunately when he does seize we just have to let him seize. This is going to break my heart, but at least we know it is not hurting him.
The area in the brain in which the stroke occurred was the left parietal lobe. In adults, this area normally controls motor skills on the person's right side of their body. Although this is the case in adults, we still don't know how Brayden will be affected. He noted that a baby's brain is like a clean slate. Nothing is completely defined yet other than what they need to do to eat and breathe. So if there is something in that area that is missing, the brain could compensate for it in another part of the brain. It just re-wires the area to make up for the loss.
Dr. Ritacco thinks that Brayden's outlook looks good, however we will just have to wait and see when he grows and gets bigger if there any signs of difference between the right and left hand sides. He is going to have to be on anti-seizure medicine initially for 3 months. What they do is in about a month and a half they hook him up again and monitor his brain activity. If there are no significant deviations, then we would slowly ween him off the medication. If there are problems then he would stay on the medication. Dr. Ritacco thinks that there is a good chance that he will just out grow the seizures. At this point Jon and I are optimistic about the outcomes, but of course we will be very cautious going forward with him. He is going to have many checks along the way. He will also have a full evaluation done in a few months with PT and OT to see if we need to start some therapy on him now. So even if there are some physical side affects we can catch them early.
Going forward, Brayden needs to have a lower level of anti seizure medication in his blood. They draw his blood once a day to check to status of that. Once we reach a good level, then we need to maintain that level. So he will be in the NICU for a few more days until all of this has happened. We also have to make sure he is off all of his IV's and the feeding tube. They started to feed him through a bottle late last night and we got a report this morning that feeding will not be an issue. As long as he was awake he can have the feeding through the bottle and as much as he wants. Well, little piggy at different feedings 40 cc, 50 cc, and the last one was 60 cc. Keep in mind they were only feeding him 10 cc when they started the tube on Wednesday. He is going to be a big strong boy. We just a call from the nurse about an hour ago that they have taken him off all the electrodes so we will finally be able to hold him!!! I am finishing this up and we are rushing over there to hold him for the rest of the night. Thank you for all the great thoughts and prayers this week. They have definitely helped out!!!
Thursday, November 13, 2008
Update...
We just got back from visiting Brayden at the hospital all day long and just wanted to report on a few updates that we have. When we got there this morning they informed us that they took him off the deep sedative drug (Versed). Initially they told us he would be on it at most for 48 hours, he was on it for about 34 hours. They decided to take him off of it because he had no seizures while on the medication.
We are in a very trying time right now with him and watching him closely to see if he is going to have any more seizures. He is still hooked up to all the electrodes and videos to monitor his behavior for the next 24 hours without the medication.
Since he got off the medication they said that he would slowly start to wake up more and be more interactive. So we stuck around for most of the day and sure enough after being off the medicine for a few hours he woke up and was alert.
He was being given breast milk through a feeding tube and he was digesting it good enough that they actually increased his dosage and said that if he was alert enough he could have it in a bottle. During his afternoon feeding, he finally got milk through the bottle. He was hilarious, he drank it down in about 30 seconds and he was mad because he wanted more. For about an hour after the feeding he was still smacking his lips. I guess we won't have a problem feeding him. He wasn't content at all, he didn't even fall back to sleep. The doctor told us that at the next feeding he could have as much as he wanted, so that is good news.
Right before we left we got one last update from the doctor. Since being off the medicine for 9 hours, he's had no physical seizures. He did have a few what the doctor called blips on the readings from the electrodes. They were not normal brain behaviors, but they were not a complete seizure. Just slightly abnormal. So we are being very cautious for the next few hours until we have reached a full 24 hours without any seizures. We are meeting the the pediatric neurologist first thing tomorrow morning, so hopefully we will know a lot more about his condition then. We'll definitely post again after we meet with the neurologist in the morning.
We are in a very trying time right now with him and watching him closely to see if he is going to have any more seizures. He is still hooked up to all the electrodes and videos to monitor his behavior for the next 24 hours without the medication.
Since he got off the medication they said that he would slowly start to wake up more and be more interactive. So we stuck around for most of the day and sure enough after being off the medicine for a few hours he woke up and was alert.
He was being given breast milk through a feeding tube and he was digesting it good enough that they actually increased his dosage and said that if he was alert enough he could have it in a bottle. During his afternoon feeding, he finally got milk through the bottle. He was hilarious, he drank it down in about 30 seconds and he was mad because he wanted more. For about an hour after the feeding he was still smacking his lips. I guess we won't have a problem feeding him. He wasn't content at all, he didn't even fall back to sleep. The doctor told us that at the next feeding he could have as much as he wanted, so that is good news.
Right before we left we got one last update from the doctor. Since being off the medicine for 9 hours, he's had no physical seizures. He did have a few what the doctor called blips on the readings from the electrodes. They were not normal brain behaviors, but they were not a complete seizure. Just slightly abnormal. So we are being very cautious for the next few hours until we have reached a full 24 hours without any seizures. We are meeting the the pediatric neurologist first thing tomorrow morning, so hopefully we will know a lot more about his condition then. We'll definitely post again after we meet with the neurologist in the morning.
Movie Star
Brayden is still a movie star. They still have him hooked up to the electrodes and are monitoring his brain activity since they have switched medications on him. They started this second medicine a little after midnight yesterday. The doctors wanted him on the video monitoring for another full 24 hours with this new medicine to see if any seizures have occurred. Since some of the seizure might be smaller and have no outward physical signs.
The big downside to the medicine that they gave him is that it is a sedative, so they warned us that he is just going to sleep and be out of it when we see him. Their biggest concern was that it could cause respiratory depression and he would have to be placed on a respirator.
We went and saw him yesterday morning. As soon as Jon and I said hello to him he opened up his eyes and was fully aware that we were there. He actually stayed awake and looked at us for a good hour when we were visiting with him. Not a whole lot of movement, since he is slightly sedated. He sleeps a ton and he sleeps in the most adorable position with his arms straight up over his head and his legs spread out. We will take more pictures of him, but not until all the wires are taken off of him.
The doctors ordered that he could start being fed breast milk through a feeding tube so Jon and grandma W. got to feed him some milk yesterday. Since he was awake, we placed some on a pacifier so he could taste a little of it, but the rest of it went down the tube into his stomach. He handled the feeding really well and they have already upped the amount that he can eat since he is digesting it so well.
During our other visits that we made with him yesterday, he was out of it and just slept the whole time. We called in again this morning and he has gone more than 24 hours with out any outward seizures. They still have to have the neuro specialists review the data to see if there were any that occurred without any physical signs of the seizures. We are hoping that after the doctors visit with him this morning that they will order all the electrodes off so that we will be able to hold him. They are planning on keeping him on this medicine for another day or so and then try to get him back onto the first anti seizure medicine. We meet with the neurologist tomorrow, so hopefully we will have a better ideal of his overall status.
The big downside to the medicine that they gave him is that it is a sedative, so they warned us that he is just going to sleep and be out of it when we see him. Their biggest concern was that it could cause respiratory depression and he would have to be placed on a respirator.
We went and saw him yesterday morning. As soon as Jon and I said hello to him he opened up his eyes and was fully aware that we were there. He actually stayed awake and looked at us for a good hour when we were visiting with him. Not a whole lot of movement, since he is slightly sedated. He sleeps a ton and he sleeps in the most adorable position with his arms straight up over his head and his legs spread out. We will take more pictures of him, but not until all the wires are taken off of him.
The doctors ordered that he could start being fed breast milk through a feeding tube so Jon and grandma W. got to feed him some milk yesterday. Since he was awake, we placed some on a pacifier so he could taste a little of it, but the rest of it went down the tube into his stomach. He handled the feeding really well and they have already upped the amount that he can eat since he is digesting it so well.
During our other visits that we made with him yesterday, he was out of it and just slept the whole time. We called in again this morning and he has gone more than 24 hours with out any outward seizures. They still have to have the neuro specialists review the data to see if there were any that occurred without any physical signs of the seizures. We are hoping that after the doctors visit with him this morning that they will order all the electrodes off so that we will be able to hold him. They are planning on keeping him on this medicine for another day or so and then try to get him back onto the first anti seizure medicine. We meet with the neurologist tomorrow, so hopefully we will have a better ideal of his overall status.
Wednesday, November 12, 2008
Pictures...
The Worthington Family
Jon giving Brayden his first bottle
Grandma Orchowski
Grandma Patty
Grandpa Worthington
Aunt Jamie and Uncle Josh
Brayden just looking around
Peacefully sleeping (though we keep taking pictures of him)
Getting some rest
Uncle Josh and Aunt Lauren
Daddy and BraydenWelcome Brayden
Brayden Michael Worthington entered this world on November 9, 2008.
Stats on Brayden:
Weight - 8 lbs. 6 oz.
Length - 21 1/2 inches
Time - 3:56 pm
He absolutely melted our hearts the second that we met him. He has a ton of long dark hair! As soon as we got to hold him he was very attentive, he loves to look around and check everyone out. He has already gotten to meet his grandparents, who absolutely adore him and already are spoiling him. He also has gotten to meet some of his aunts and uncles. He is a pretty content baby and will give you the pirate look every once in a while to just look around and see what is going on. He slept pretty good the first night, only getting up a few times to eat and then went right back to bed. And let me tell you, he loves to eat!!
On Monday we had noticed that he had started to do a little what we could describe as a twitch/ muscle spasm on his right arm. So we watched it, just thinking that he was cold. But unfortunately he did this twitch 3 times in about a period of 4 hours or so. So we called in the nurse while he was going through the twitch and they immediately took him to be checked out by the pediatrician. Right off the bat they wanted to run some more tests on him to see what was causing this twitch. The 3 things that they thought right off the bat it could be would be an infection, a metabolic problem, or something to do with the brain. So he got poked and picked quite a bit. They did a spinal tap to see if there was an infection in the spinal cord, that came back negative. And all his blood tests initially came back normal so no metabolic problems. The next step was to get him to a CT scan to take some images of his brain.
Stats on Brayden:
Weight - 8 lbs. 6 oz.
Length - 21 1/2 inches
Time - 3:56 pm
He absolutely melted our hearts the second that we met him. He has a ton of long dark hair! As soon as we got to hold him he was very attentive, he loves to look around and check everyone out. He has already gotten to meet his grandparents, who absolutely adore him and already are spoiling him. He also has gotten to meet some of his aunts and uncles. He is a pretty content baby and will give you the pirate look every once in a while to just look around and see what is going on. He slept pretty good the first night, only getting up a few times to eat and then went right back to bed. And let me tell you, he loves to eat!!
On Monday we had noticed that he had started to do a little what we could describe as a twitch/ muscle spasm on his right arm. So we watched it, just thinking that he was cold. But unfortunately he did this twitch 3 times in about a period of 4 hours or so. So we called in the nurse while he was going through the twitch and they immediately took him to be checked out by the pediatrician. Right off the bat they wanted to run some more tests on him to see what was causing this twitch. The 3 things that they thought right off the bat it could be would be an infection, a metabolic problem, or something to do with the brain. So he got poked and picked quite a bit. They did a spinal tap to see if there was an infection in the spinal cord, that came back negative. And all his blood tests initially came back normal so no metabolic problems. The next step was to get him to a CT scan to take some images of his brain.
The scan came back that he had an area on his brain on the left hand side in his parietal lobe. Initially just the general doctor had read it and an adult neurologist, so we didn't know the full extent of everything. In order to keep track of the seizures they were going to hook him up and watch his activity for 24 hours in the NICU. Jon and I went off to bed knowing that he had a spot on his brain, which they were labeling as a stroke, and that they were just going to monitor him.
When we came down in the morning to the NICU, Brayden was a movie star!! They hooked up about 20 electrodes to his head to monitor his brain waves and they literally had a camera watching him so the specialist could watch what would happen during his twitches. Unfortunately he couldn't be held or moved because they needed to monitor all of his movements, so if he cried we couldn't do anything to sooth him. But of course, they have a good trick of putting sugar water on a pacifier and boy does he love that sugar water! I guess he has his mothers taste buds. The nurse in there said he sounds like Maggie Simpson, going to town on that pacifier. He looked pretty content in there with the pacifier in his mouth.
We went down quite a few times to the NICU to visit him and get updates as he went along. The doctors initial assessment of the seizures were as follows. He had a stroke sometime during what they think was during or right after delivery. The brain is trying to compensate for this area of bleeding and swelling so the neurons in that area are over-firing, causing him to have the seizures on the right hand side. Initially they just wanted to watch for when the seizures occur and then give him some anti-seizure medicine to help reduce the seizures. The doctor said that more than likely the damage is done to his brain, but we are just trying to manage the seizures.
He had multiple seizures during the monitoring, so they had maxed out on the amount of medication that they could give to him to help reduce the seizures without affecting his body. They called us last night in the middle of the night to tell us that they would have to start another drug which is going to place him in a sedative state for a couple days. This is going to actually help to relax the brain and let the damaged area sort of heal so that it is not over firing causing him to have these seizures. We called this morning and found out that he's been doing better since getting the new medicine which is promising.
So that is the latest update that we have on him. We are meeting with a pediatric neurologist on Friday who is going to answer all our questions about the long term prognosis and any side affects that he might have due to this stroke. He is definitely one strong kid. Everytime we went down there to see him he would be sound asleep and when he heard Jon and I's voices he would wake up and look at us!!
The ideal of this blog is to keep everyone updated on how he is doing so that we don't have to keep calling and emailing everyone. We are going to try to update it every day while he is in the NICU. Please feel free to write comments and pass along the web address so that everyone can be informed on our little guy. We just ask that everyone keep Brayden in their thoughts and prayers.
The ideal of this blog is to keep everyone updated on how he is doing so that we don't have to keep calling and emailing everyone. We are going to try to update it every day while he is in the NICU. Please feel free to write comments and pass along the web address so that everyone can be informed on our little guy. We just ask that everyone keep Brayden in their thoughts and prayers.
If you want to check out the pictures that they took at the hospital you can go to http://www.bellababyphotography.com/ , enter the website, then click on client. The password is worthington (all lower case).
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