I can't believe it's been a little over a year since Benjamin came home from the hospital. I wish I could say he's made unbelievable progress this past year, but that's not the case. Because his seizures are still not controlled, we recently decided to move his neurology care over to MGH. Our meeting with the new doctor went really well, and she's already making medication changes. I can't even describe the feelings we go through with each new medication... first there's excitement and hope, and then despair and frustration. I can't wait for the day when we realize we've found the right concoction! It saddens me because I can almost sense that Benjamin wants to move and communicate, but it's like he's trapped in this body that doesn't work very well and a mind that's confusing him.
I've been obsessed with his teeth or lack thereof. I've asked almost every medical professional if they can tell me when he's going to cut a tooth. I was so desperate for an answer that I even cornered a dental hygienist at a fundraiser we went to (I thought Ryan was going to hide)!
A dear friend of mine, who had a little guy in the NICU when Benjamin was there, warned me that preemies' teeth sometimes come in black from all the antibiotics and other medications they had. Well, as fate would have it, over the past day we noticed Benjamin's bottom right tooth coming in and the bud is brown! So of course now I want to push the darn tooth right back in! For goodness sake, as if the poor baby doesn't already get stares, now we have to deal with this.
Not much else is happening around here besides more doctors' appointments and therapy sessions. I apologize to those who have called me, or sent me messages that I haven't been able to return. I wish there were more hours in a day. Between appointments and work, I've been trying to keep the little princess busy. Thankfully she's loving school. I guess there's a little boy in her class that has a crush on her and has been singing songs about her. As if we don't have enough to worry about!
Saturday, September 24, 2011
Friday, July 29, 2011
July 29, 2011
I can't believe how bad I've been about updating this blog! It's been over two months since my last post and while work has kept me busy, "Ben Ben" (as Jadyn calls him), has kept me even busier. I wish I could say things are going really well, but I'd be lying. We were able to spend a few relaxing days at the beach between hospital admissions, but that seems to be the way our summer is playing out.
To make a long story short, Benjamin’s seizures are still not under control. He started having infantile spasms and was diagnosed with a modified hypsarrhythmia EEG pattern. The first drug we tried was a failure, so he was admitted to Children’s this past Tuesday to start another treatment - Acthar gel injections. Luckily we have a nurse coming in every day to help with the steroid injections (he gets a total of 20 over a 5 week period) because I have a really hard time giving them to him. It would be a piece of cake if it wasn’t my own kid.
We couldn’t leave the hospital until we mastered the shot. I was determined to get out of there so I rolled up my sleeves and did what I had to do. It was actually comical because we were taught on oranges and maple syrup (the Acthar is really thick) and apparently I did a good job on the orange although I may have been “a bit too aggressive” according to the nurses. The needle goes through the orange rind a lot easier than one would think! When it came time for me to give Benjamin the injection I was definitely more hesitant, and apologized profusely to my little baby when it was over. Not a good feeling at all.
There are a lot of side effects to the treatment and we’re already seeing quite a few. We have to monitor his urine every morning for sugar, his blood pressure twice a week and his stools twice a week as well. He’s extremely irritable and his reflux is so bad he was actually vomiting blood today. However, fingers crossed, I think the treatment might be working. He’s still actively seizing, but I’m not seeing as many seizures each day.
In addition to the side effects mentioned above, the steroid weakens his immune system so the little man is at a greater risk for infection. If that isn’t scary to begin with, he can’t get immunizations (or his flu shot) for 6 months after the end of the treatment because they won’t be effective. This means another winter in quarantine. But, if we can stop the seizures and see some developmental progress it’s worth it!
People have been asking about Jadyn and that means a lot to us. She’s doing very well, and if she doesn’t grow up to be a nurse or a doctor, I think she might be an actress. She does great impressions and loves to role play. She keeps us sane and is always good for a laugh. The voice that comes out of her small stature is incredible and I think Benjamin is enamored with her. One thing we’ve noticed is if Benjamin is crying and Jadyn starts, he stops!
We'll be scheduling another Children's admission when treatment ends, but we're planning on hitting the beach a few more times beforehand. Surprisingly Benjamin loves the beach. I lay him on his side on a blanket under the shade and he either sleeps or gnaws on his hand and listens to the waves. We even dipped his toes in the water and he seemed to like it. Maybe next year he'll be able to sit up and play in the sand!
To make a long story short, Benjamin’s seizures are still not under control. He started having infantile spasms and was diagnosed with a modified hypsarrhythmia EEG pattern. The first drug we tried was a failure, so he was admitted to Children’s this past Tuesday to start another treatment - Acthar gel injections. Luckily we have a nurse coming in every day to help with the steroid injections (he gets a total of 20 over a 5 week period) because I have a really hard time giving them to him. It would be a piece of cake if it wasn’t my own kid.
We couldn’t leave the hospital until we mastered the shot. I was determined to get out of there so I rolled up my sleeves and did what I had to do. It was actually comical because we were taught on oranges and maple syrup (the Acthar is really thick) and apparently I did a good job on the orange although I may have been “a bit too aggressive” according to the nurses. The needle goes through the orange rind a lot easier than one would think! When it came time for me to give Benjamin the injection I was definitely more hesitant, and apologized profusely to my little baby when it was over. Not a good feeling at all.
There are a lot of side effects to the treatment and we’re already seeing quite a few. We have to monitor his urine every morning for sugar, his blood pressure twice a week and his stools twice a week as well. He’s extremely irritable and his reflux is so bad he was actually vomiting blood today. However, fingers crossed, I think the treatment might be working. He’s still actively seizing, but I’m not seeing as many seizures each day.
In addition to the side effects mentioned above, the steroid weakens his immune system so the little man is at a greater risk for infection. If that isn’t scary to begin with, he can’t get immunizations (or his flu shot) for 6 months after the end of the treatment because they won’t be effective. This means another winter in quarantine. But, if we can stop the seizures and see some developmental progress it’s worth it!
People have been asking about Jadyn and that means a lot to us. She’s doing very well, and if she doesn’t grow up to be a nurse or a doctor, I think she might be an actress. She does great impressions and loves to role play. She keeps us sane and is always good for a laugh. The voice that comes out of her small stature is incredible and I think Benjamin is enamored with her. One thing we’ve noticed is if Benjamin is crying and Jadyn starts, he stops!
We'll be scheduling another Children's admission when treatment ends, but we're planning on hitting the beach a few more times beforehand. Surprisingly Benjamin loves the beach. I lay him on his side on a blanket under the shade and he either sleeps or gnaws on his hand and listens to the waves. We even dipped his toes in the water and he seemed to like it. Maybe next year he'll be able to sit up and play in the sand!
Sunday, May 8, 2011
May 23, 2011
We're still trying to get Benjamin's seizures under control. I remember writing a paper in grad school on the rising prevalence of medical errors and unfortunately I can say we've experienced this firsthand. We asked Benjamin's GI doctor last week if we could increase the drug he's on for gut motility because his reflux is out of control again. He said we could, but asked what seizure med Benjamin was on because the Erythromycin can interact with certain drugs. Well, although we fill out med sheets every time we have an appt. at Children's, his neurologist said she was unaware he was taking the Erythromycin. Regardless of whether or not she actually reads the med lists when we visit, her team was giving him both medications when he was admitted to the hospital over a month ago! I can even remember one Fellow or Resident asking us when she was signing off on the discharge papers why he was on the Erythromycin! Hello??? Are you kidding me? There should have been sirens and blinking red lights going off in the room! Anyway, to make a long story short, there are now only two seizure medications Benjamin can try that aren't metabolized by the liver (and therefore will have no interaction with the Erythromycin which is the only drug used for gut motility at the moment). One can cause permanent peripheral vision loss and the other can cause heart problems. His neurologist was anxious to start one of them, but I told her we needed to wait and talk to Benjamin's ophthalmologist before we made any decisions. We're planning on talking with him tomorrow and hopefully then we can come up with a new plan
On a positive note, we weaned off the Keppra about two weeks ago and what a change in Benjamin's disposition! He’s starting to smile more and will almost laugh when we tickle him! He’s not doing anything a baby his age would normally be doing (rolling, crawling, sitting, playing with toys or babbling), but he most certainly has a wonderful personality.
We just ordered him new glasses because his prescription went up again. Poor little guy. I’m not even sure they make a difference, but we’ll continue to put them on him. His EI therapist brought him a special suit. It comes in two pieces that velcro together and it's designed to help give him some “sensory input” and make his trunk stronger. The material it's made of is really stretchy and almost feels like a smooth rubber on the back, but it's completely breathable. He’s also getting fitted for leg braces soon. He’s going to have to wear them the entire day. That breaks my heart because I know he’s going to hate them, but at this point we have to be proactive and stretch him as much as we can so he doesn’t develop contractures.
I can't wait for some warm weather so we can go out for a walk! When we did have some sunny days, he seemed to enjoy the outdoors (as long as the wind didn't blow). It would be great if he could sit in a bucket swing, but I'm not sure we're quite there yet! I tried one of those jumpy seats that goes in the middle of the doorway, but that was pretty much a disaster. First off, he can't "spin" because that can bring on a seizure; and second, no matter how much padding I stuffed around him, he still fell over. Needless to say, that thing was quickly tossed down the basement stairs!
On a positive note, we weaned off the Keppra about two weeks ago and what a change in Benjamin's disposition! He’s starting to smile more and will almost laugh when we tickle him! He’s not doing anything a baby his age would normally be doing (rolling, crawling, sitting, playing with toys or babbling), but he most certainly has a wonderful personality.
We just ordered him new glasses because his prescription went up again. Poor little guy. I’m not even sure they make a difference, but we’ll continue to put them on him. His EI therapist brought him a special suit. It comes in two pieces that velcro together and it's designed to help give him some “sensory input” and make his trunk stronger. The material it's made of is really stretchy and almost feels like a smooth rubber on the back, but it's completely breathable. He’s also getting fitted for leg braces soon. He’s going to have to wear them the entire day. That breaks my heart because I know he’s going to hate them, but at this point we have to be proactive and stretch him as much as we can so he doesn’t develop contractures.
I can't wait for some warm weather so we can go out for a walk! When we did have some sunny days, he seemed to enjoy the outdoors (as long as the wind didn't blow). It would be great if he could sit in a bucket swing, but I'm not sure we're quite there yet! I tried one of those jumpy seats that goes in the middle of the doorway, but that was pretty much a disaster. First off, he can't "spin" because that can bring on a seizure; and second, no matter how much padding I stuffed around him, he still fell over. Needless to say, that thing was quickly tossed down the basement stairs!
Saturday, April 16, 2011
April 16, 2011
While Benjamin continues to have seizures, he was discharged late yesterday afternoon. The official EEG results were devastating. Ryan was working so I was the only one in the room when his doctor came in at the end of the day to discuss them with me. I was told that between seizures, Benjamin's "background activity" is extremely disorganized with no recognizable pattern. What's most concerning is that the "disorganization" has evolved from his last EEG which was about 2 weeks ago. Right now they're diagnosing him as having general epilepsy, but his primary neuro doctor is worried that he may develop a condition called hypsarrhythmia. I asked her what this meant, and she said the seizures will most likely escalate. She said Benjamin will always need to be on a moderate to heavy dose of multiple seizure meds. She said the goal is for him not to be so medicated that he's "not Benjamin anymore." I had him sleeping so peacefully in my arms and I just looked at him and broke down. I told her that I know he's not going to be perfect, but I want him to have a good quality of life. Ryan arrived shortly after (in time for the next round of neuro doctors to come in) and got the same story. I started crying again and all I could say to them was "hasn't this poor little boy been through enough?" I really thought having gone through what we went through a year ago, I would get used to these bombshells being dropped on us, but I'm not. Maybe I've been living in denial for a bit. Who knows. But all of a sudden this is very real and unbelievably scary. Ryan and I are finding ourselves asking the same questions we asked a year ago... Why is this happening to us? Why can't Benjamin catch a break?
Thursday, April 14, 2011
April 14, 2011
Well, we're still at Children's. We got some pretty devastating news late this afternoon. Benjamin's discharge papers were getting filled out when the neuro docs rounded and put the kibosh on it. We learned that the "quirky" behavior I was referring to in my last post (the head turning and eye fluttering) showed up as seizures on the EEG. I wouldn't be so upset if he did this only a few times a day; however, these seizures are almost constant and the phenobarbital hasn't had an effect on them. If I actually counted them, there's a possibility he could have them more than 100 times a day. We were told it can take kids a few minutes to even hours to recover from a seizure. The larger ones really tire Benjamin out. These smaller ones don't seem to take much out of him, but if he has them every 5 or 10 minutes and it takes him a few minutes to get over them, this isn't good. It's definitely a distraction for him and will hamper his development and progress. He's getting an even larger dose of phenobarbital so we'll see how his day is tomorrow. I feel like this poor little baby can't catch a break. He even broke out in hives from the solution used to take the EEG probes off his head! Please keep our little man in your thoughts and prayers. I'm confident we'll get through this. No matter how much I want to be home, it's good we're here. It's going to get better. If I keep saying that over and over maybe it'll come true.
Wednesday, April 13, 2011
April 13, 2011
Benjamin's managed to ward off a hospital stay for almost 7 months and I'm so proud of him for that! But here I am, typing from the Neurology ward at Children's 9NW. The episodes Benjamin's been experiencing are in fact seizures and they've been escalating since my last post. This has been one of my biggest fears. He started on the Keppra about two weeks ago and he's been nothing but a mess. One of the side effects to the medication is "hostility" and boy has he been irritable! We could have handled the irritabilty, but the continuation of the seizures has driven us crazy. We've gone up twice on the Keppra with no improvement whatsoever.
I had a gut feeling yesterday wasn't going to be a good day. Benjamin had two short seizures even before his OT session at 10am. During OT, he had another one that lasted about one minute (it doesn't seem like a long time, but when you're living it, it's an eternity). Needless to say, we ended OT early, I took him home and called the neurologist. Her recommendation was to give him an extra bolus of the Keppra and increase his regular dosage going forward. A few hours later he had another seizure and his face was turning blue. He came out of it briefly and then seized again. I called 911, the ambulance took us to South Shore where we stayed for a few hours. In the ER we saw our two favorite RTs and I was so grateful! There's nothing like seeing a familiar and caring face when you're in a not so great place. A few hours later, the docs loaded him up with Phenobarbital and we were en route to Children's. Once we got here they gave him another huge dose of Phenobarbital and he was pretty much done for the night.
We were a little worried this morning because he was like a little rag doll; unbelievably floppy. We were so afraid this was what he was going to be like going forward, but we were put at ease when neurology rounded this morning and told us they slammed him with the drugs and he would normalize after a few days. They said he would basically feel drunk for two days.
He's hooked up to the EEG through tomorrow to make sure the other unusual behavior he's exhibiting all the time (the head turning and eye fluttering) isn't a seizure as well. We know the mouth drooping and lip smacking is definitely seizure activity, but we're hoping this other stuff is just Benjamin being quirky!
We're keeping our fingers crossed that he remains seizure free tonight and we can go home tomorrow. Although the nurses and doctors have been wonderful, I don't like sleeping here and I miss Jadyn.
She was home with me and my mom yesterday when I had to call 911. I was afraid she could sense my panic and was going to get all upset, but I should have realized that wasn't going to be the case. She was her usual self, and was entranced with the commotion. As I was running around the house trying to gather what I would need for the hospital this little voice ws right behind me telling me I had better move it because the guys in the ambulance were waiting for me!
I had a gut feeling yesterday wasn't going to be a good day. Benjamin had two short seizures even before his OT session at 10am. During OT, he had another one that lasted about one minute (it doesn't seem like a long time, but when you're living it, it's an eternity). Needless to say, we ended OT early, I took him home and called the neurologist. Her recommendation was to give him an extra bolus of the Keppra and increase his regular dosage going forward. A few hours later he had another seizure and his face was turning blue. He came out of it briefly and then seized again. I called 911, the ambulance took us to South Shore where we stayed for a few hours. In the ER we saw our two favorite RTs and I was so grateful! There's nothing like seeing a familiar and caring face when you're in a not so great place. A few hours later, the docs loaded him up with Phenobarbital and we were en route to Children's. Once we got here they gave him another huge dose of Phenobarbital and he was pretty much done for the night.
We were a little worried this morning because he was like a little rag doll; unbelievably floppy. We were so afraid this was what he was going to be like going forward, but we were put at ease when neurology rounded this morning and told us they slammed him with the drugs and he would normalize after a few days. They said he would basically feel drunk for two days.
He's hooked up to the EEG through tomorrow to make sure the other unusual behavior he's exhibiting all the time (the head turning and eye fluttering) isn't a seizure as well. We know the mouth drooping and lip smacking is definitely seizure activity, but we're hoping this other stuff is just Benjamin being quirky!
We're keeping our fingers crossed that he remains seizure free tonight and we can go home tomorrow. Although the nurses and doctors have been wonderful, I don't like sleeping here and I miss Jadyn.
She was home with me and my mom yesterday when I had to call 911. I was afraid she could sense my panic and was going to get all upset, but I should have realized that wasn't going to be the case. She was her usual self, and was entranced with the commotion. As I was running around the house trying to gather what I would need for the hospital this little voice ws right behind me telling me I had better move it because the guys in the ambulance were waiting for me!
Monday, March 14, 2011
March 14, 2011
I think about the laser ablation and the boys' births everyday, but the details really came flooding back over the past week and a half. Benjamin turned 1 last Friday and as much as I wanted to celebrate, my heart just wasn't in it. I baked a cake, we sang happy birthday and took a few pictures, but that was about it. I promised my beautiful little boy that next year will be different. I do want to thank everyone who sent me notes wishing him a happy birthday, cards and gifts. Even though I had a hard time acknowledging the day, I'm grateful for those that did.
Today was especially hard because it's the anniversary of Stephen's death. If I had known what was to come, I would have have spent every minute of those 3 days we had him by his isolette. Even though Benjamin is bigger now, sometimes when I look at him I have flashbacks of Stephen's perfect little face. It comforts me to know that this is exactly what Stephen would have looked like if he was still with us. I don't have wonder.
To add to this already depressing post, I'm fairly certain Benjamin is having seizures. He's displaying all the sigs of petit mal seizures and he has them multiple times a day. I guess since an MRI isn't in the near future, he'll most likely have to have an EEG.
We finally have a GI doctor and so far I really like him. Benjamin's now considered "failure to thrive" because he hasn't gained any weight in over 3 months and this doctor is going to help us chunk him back up! Over the past few days we've been increasing his tube feedings and he's gagging alot, spitting more and overall uncomfortable. He'll be starting back on the Erythromycin tomorrow. Add another med to the mix!
I keep telling myself it could be worse. We've hit a few bumps in the road, but things will get better!
Today was especially hard because it's the anniversary of Stephen's death. If I had known what was to come, I would have have spent every minute of those 3 days we had him by his isolette. Even though Benjamin is bigger now, sometimes when I look at him I have flashbacks of Stephen's perfect little face. It comforts me to know that this is exactly what Stephen would have looked like if he was still with us. I don't have wonder.
To add to this already depressing post, I'm fairly certain Benjamin is having seizures. He's displaying all the sigs of petit mal seizures and he has them multiple times a day. I guess since an MRI isn't in the near future, he'll most likely have to have an EEG.
We finally have a GI doctor and so far I really like him. Benjamin's now considered "failure to thrive" because he hasn't gained any weight in over 3 months and this doctor is going to help us chunk him back up! Over the past few days we've been increasing his tube feedings and he's gagging alot, spitting more and overall uncomfortable. He'll be starting back on the Erythromycin tomorrow. Add another med to the mix!
I keep telling myself it could be worse. We've hit a few bumps in the road, but things will get better!
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