Benjamin's almost 6 weeks into the Ketogenic diet and we've seen no improvement. The first couple of weeks were hellish. He was up to 90 seizures a day, the reflux was horrific, and he was just plain miserable. We were told his seizures could increase for about two weeks so we were prepared for it, but had high hopes we would see a significant decrease after that time. The hardest part was the follow-up appointment we had with Dr. Thiele. The whole team was as defeated as we were!
He's still on the diet, but probably not for much longer. Benjamin will most likely start a new drug called Banzel within the next few days. Banzel is the only drug left to try that has been found to effectively manager the types of seizures he's having. His epilepsy is difficult to treat because the seizures are firing from multiple spots in his brain. If this drug doesn't work, there are two left (both of which have scary side effects) that aren't as promising, and then it's back to square one... meaning we revisit all the drugs he's already tried.
Despite the seizures, Ben's had some great days. He's my little cuddlebug and his smiles melt my heart. Usually during the early hours of the morning, Ryan and I end up with both kiddos in our bed and I love waking up and hearing Jadyn say "Good morning Ben Ben! Awww... Mom, he's smiling!" We are so blessed.
Tuesday, December 20, 2011
Sunday, November 6, 2011
November 6, 2011
A few weeks ago Benjamin had an equipment evaluation at Children's and boy was that a wake-up call! I left there feeling grateful that we can get all of this stuff (a special stroller, stander and bath seat), but at the same time I felt so unbelievably sad that we need it. Seeing the stroller we'll be getting (which I keep calling a wheelchair because that's what it looks like) made Benjamin's challenges that much more real to me. I think the kicker was on our way out we were stuck in an elevator with a set of identical twin boys, just about Ben's age. I had a smile plastered on my face, and I was talking to them while thinking I couldn't get out of that elevator fast enough. It was a reminder of what I should have had. I know we're blessed, and I'm incredibly thankfully for Benjamin each and every day, but not having Stephen can be torture.
In other medical news, Benjamin will be admitted to MGH in about a week to start the Ketogenic diet. It's basically an all fat diet that's used in children with seizures that are difficult to control with drugs. He'll have a special soy-based formula and we'll be given a list of all the things he can eat by mouth. We've been practicing... so far he's tried bacon in a mesh bag which he didn't mind, and just the other night I pureed a breakfast sausage which I believe, if he could, he would have given two thumbs up. He ate the whole thing! Because he has the g-tube, this diet won't be that hard to control, but it'll still be challenging because all his food has to be weighed.
It's hard for me to write more tonight because I can't take my mind off two other unbelievably special boys that are struggling with some health issues. Jadyn and I had a lot of people to pray for tonight.
More to come in a few weeks...
In other medical news, Benjamin will be admitted to MGH in about a week to start the Ketogenic diet. It's basically an all fat diet that's used in children with seizures that are difficult to control with drugs. He'll have a special soy-based formula and we'll be given a list of all the things he can eat by mouth. We've been practicing... so far he's tried bacon in a mesh bag which he didn't mind, and just the other night I pureed a breakfast sausage which I believe, if he could, he would have given two thumbs up. He ate the whole thing! Because he has the g-tube, this diet won't be that hard to control, but it'll still be challenging because all his food has to be weighed.
It's hard for me to write more tonight because I can't take my mind off two other unbelievably special boys that are struggling with some health issues. Jadyn and I had a lot of people to pray for tonight.
More to come in a few weeks...
Saturday, September 24, 2011
September 24, 2011
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!
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!
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!
Tuesday, February 15, 2011
February 15, 2011
I feel as though a lot of craziness has happened since my last post. We had a good appointment with Neurology. They didn't argue with us at all about dropping Benjamin's neuro meds. They decided we should start with the Neurontin. We gradually decreased his dosage, and he was completely off after about a week and a half. So far, we haven't noticed much of a difference with his eyes. We're going to slowly start to wean him off the Clonazepam (Klonopin), starting today. He probably won't completly come off until the beginning of April (it has to be that slow). Hopefully we'll start to see him gain some strength in his neck and upper torso after we get rid of this one. It's so sad that he's 11 months old and he still can't hold his head up for more than 3 or 4 seconds at a time.
He's been more irritable than normal lately and I don't believe it's related to the lack of Neurontin, even though the purpose of that med is to treat irritability. He's definitely teething and it almost looks like he's going to get quite a few at once. I can't feel the "points" yet, but there's a lot of whiteness going on and a few large bumps.
Although the Pats didn't play, Superbowl Sunday was memorable for us this year that's for sure! We don't know how it really happened, but Benjamin managed to remove his g-tube without his hands! I have a feeling he arched it out. It was due to be replaced soon anyway and we think the balloon that's used to keep it in his belly was leaking. I have to say we handled the situation beautifully... I had envisioned this happening at some point, and thought when it did mass panic and a lot of screaming (on my part) would ensue. This is basically what happened:
Ryan: (In the process of trying to calm Benjamin down) "Ummm, yeah, okay... Jackie? The g-tube's out!"
Me: "Huh?"
Ryan: (Walking toward me with Benjamin in one arm while holding the g-tube with deflated balloon in his hand) "Benjamin managed to get his g-tube out."
Me: "Are you kidding me?" (I go into auto pilot, grab baby, put him on his changing pad, slap a piece of gauze over the open hole in his belly and tape it down like crazy, hand baby back to dad) "Okay, take him to Children's! I'll stay with Jadyn."
Ryan: (Grabs the replacement g-tube the therapy company sent to us that we were supposed to take to Dr. Buchmiller for her to put in) "Well, we have the replacement g-tube... I'm going to do it myself!"
Me: (Looking at Ryan in horror) "Are you out of your mind??? We haven't been shown how to do this yet!" (Grab g-tube box out of his hand). "Go turn the car on so it's warm, I'll grab Jadyn and we'll all go to the ER in case I need to feed Benjamin." (If I had actually thought for a second I would have realized I couldn't feed him until the new tube was placed because the milk would have just leaked out of his belly.)
Jadyn: "What's going on? Where are we going?" (I explain what happened) "Can I see it?? I want to see it!!"
We were in Children's in record time (less than an hour) and we were told the g-tube hole had already started to close! We were there for about 3 hours because the ER docs had to contact surgery to figure out which dept. was going to put the tube in. They explained to us that this replacement was a little more complicated because the new tube is the next size up and it had to go through a small amount of vascular tissue. Thank the lord Ryan didn't decide to play doctor at home! Jadyn, god love her, was literally standing in the middle of all the doctors so she could see the action. I was in the back of the room because I couldn't bare to watch and she kept asking if she could look at the hole again!
After pool therapy the following Friday, we noticed his g-tube site looked purple/red and blistery. We thought, hey we're at South Shore, might as well take him down to the ER and have it checked out. Big mistake. I asked at the desk if they thought we would be there long because we would go to Children's instead. They said we would be called right in and a doc would take a look at it. We waited for about half an hour and were only called in because I told them I needed a place to feed Benjamin. We ended up waiting for almost 4 hours to see a doctor. We had Benjamin in his carseat and we were ready to walk out when he finally came in. He thought it didn't look that bad and we got a prescription for a cream that basically did nothing. I don't think I will ever take either one of my children to that ER again.
This morning I took Benjamin to see one of the Children's surgeons who runs a clinic out of South Shore every Tuesday. He was wonderful. He took one look at the site and said the blistery looking area was some granulation tissue. He recommended treating it with a silver nitrate stick and that's what he did. He burned the area before I could even comprehend what was going on and that was it! His skin around the g-tube is now black which I find very disturbing. Benjamin didn't like that experience so much and basically screamed the rest of the day. We get to repeat it again next Tuesday. I'm so looking forward to that.
The icing on the cake was the unexpected call I got today from one of Benjamin's Neurologists. At our last appt. they recommended he get an MRI when he turns one. We reminded them that he has that piece of wire stuck in him from when they tried to get his central line during his last big surgery. They said before they booked the MRI, they needed to follow-up with surgery about that wire because it may not be safe for Benjamin to have an MRI. Well, come to find out (from my conversation today), the wire, is actually stuck in his vein and it has the potential (although unlikely) to travel to his brain during the MRI. They went so far as to call the manufacturer of the wire and this company could not gurantee 100% that this wire is MRI compatible. So, since this MRI is nothing urgent, I was told they're going to hold off. That's all fine and well with me, but my son will probably need an MRI at some point and how are we going to figure this out??!! Ryan and I are going to have to push for some answers on this one because this isn't right.
He's been more irritable than normal lately and I don't believe it's related to the lack of Neurontin, even though the purpose of that med is to treat irritability. He's definitely teething and it almost looks like he's going to get quite a few at once. I can't feel the "points" yet, but there's a lot of whiteness going on and a few large bumps.
Although the Pats didn't play, Superbowl Sunday was memorable for us this year that's for sure! We don't know how it really happened, but Benjamin managed to remove his g-tube without his hands! I have a feeling he arched it out. It was due to be replaced soon anyway and we think the balloon that's used to keep it in his belly was leaking. I have to say we handled the situation beautifully... I had envisioned this happening at some point, and thought when it did mass panic and a lot of screaming (on my part) would ensue. This is basically what happened:
Ryan: (In the process of trying to calm Benjamin down) "Ummm, yeah, okay... Jackie? The g-tube's out!"
Me: "Huh?"
Ryan: (Walking toward me with Benjamin in one arm while holding the g-tube with deflated balloon in his hand) "Benjamin managed to get his g-tube out."
Me: "Are you kidding me?" (I go into auto pilot, grab baby, put him on his changing pad, slap a piece of gauze over the open hole in his belly and tape it down like crazy, hand baby back to dad) "Okay, take him to Children's! I'll stay with Jadyn."
Ryan: (Grabs the replacement g-tube the therapy company sent to us that we were supposed to take to Dr. Buchmiller for her to put in) "Well, we have the replacement g-tube... I'm going to do it myself!"
Me: (Looking at Ryan in horror) "Are you out of your mind??? We haven't been shown how to do this yet!" (Grab g-tube box out of his hand). "Go turn the car on so it's warm, I'll grab Jadyn and we'll all go to the ER in case I need to feed Benjamin." (If I had actually thought for a second I would have realized I couldn't feed him until the new tube was placed because the milk would have just leaked out of his belly.)
Jadyn: "What's going on? Where are we going?" (I explain what happened) "Can I see it?? I want to see it!!"
We were in Children's in record time (less than an hour) and we were told the g-tube hole had already started to close! We were there for about 3 hours because the ER docs had to contact surgery to figure out which dept. was going to put the tube in. They explained to us that this replacement was a little more complicated because the new tube is the next size up and it had to go through a small amount of vascular tissue. Thank the lord Ryan didn't decide to play doctor at home! Jadyn, god love her, was literally standing in the middle of all the doctors so she could see the action. I was in the back of the room because I couldn't bare to watch and she kept asking if she could look at the hole again!
After pool therapy the following Friday, we noticed his g-tube site looked purple/red and blistery. We thought, hey we're at South Shore, might as well take him down to the ER and have it checked out. Big mistake. I asked at the desk if they thought we would be there long because we would go to Children's instead. They said we would be called right in and a doc would take a look at it. We waited for about half an hour and were only called in because I told them I needed a place to feed Benjamin. We ended up waiting for almost 4 hours to see a doctor. We had Benjamin in his carseat and we were ready to walk out when he finally came in. He thought it didn't look that bad and we got a prescription for a cream that basically did nothing. I don't think I will ever take either one of my children to that ER again.
This morning I took Benjamin to see one of the Children's surgeons who runs a clinic out of South Shore every Tuesday. He was wonderful. He took one look at the site and said the blistery looking area was some granulation tissue. He recommended treating it with a silver nitrate stick and that's what he did. He burned the area before I could even comprehend what was going on and that was it! His skin around the g-tube is now black which I find very disturbing. Benjamin didn't like that experience so much and basically screamed the rest of the day. We get to repeat it again next Tuesday. I'm so looking forward to that.
The icing on the cake was the unexpected call I got today from one of Benjamin's Neurologists. At our last appt. they recommended he get an MRI when he turns one. We reminded them that he has that piece of wire stuck in him from when they tried to get his central line during his last big surgery. They said before they booked the MRI, they needed to follow-up with surgery about that wire because it may not be safe for Benjamin to have an MRI. Well, come to find out (from my conversation today), the wire, is actually stuck in his vein and it has the potential (although unlikely) to travel to his brain during the MRI. They went so far as to call the manufacturer of the wire and this company could not gurantee 100% that this wire is MRI compatible. So, since this MRI is nothing urgent, I was told they're going to hold off. That's all fine and well with me, but my son will probably need an MRI at some point and how are we going to figure this out??!! Ryan and I are going to have to push for some answers on this one because this isn't right.
Tuesday, January 25, 2011
January 25, 2011
It's been forever and a day since my last Benjamin update, but there's not much to write about. It's hard for me to see the changes in him because I'm with him practically every hour of every day. I really need to start taking weekly videos of him so I can look back and actually see the progress he's making because I think it'll make me feel better and maybe a little more hopeful.
Right now his eyes are worrying me. They're big and beautiful, but he's just not using them! I have been going crazy trying to figure out how he could go from tracking objects and his mobile months ago when he was in the hospital, to a blank stare. I was talking to his Perkins School teacher and we realized the deterioration in his vision occurred shortly after he started the neurological meds. It makes total sense. The drugs are used to "calm" the brain and reduce irritability and spasticity, but they probably don't calm only certain areas of the brain... so I'm convinced they're impacting his visual development. We actually saw Benjamin's ophthalmologist today and he said it's not out of the realm of possibility. He said he's seen adult vision affected by these meds and there's no reason not to believe they're related to some degree to Benjamin's vision problems. We have an appointment with Neurology on Thursday and I really want to see him weaned from these drugs. I know his neurologists are going to be hesitant about taking him off the drugs because they also have the benefit of preventing seizures. At least we can argue that Benjamin has been less irritable, which would be one pro for weaning the Neurontin. He still has his moments, don't get me wrong, but the time it takes to soothe him is getting shorter. His EI therapist saw him today and she said she saw a difference so I know it's not in my head. I will admit, I do have moments of insanity, but this was not one of them!
Quite a few people have been asking me how his Renal appointment went and we know the same now as we did before the appointment. I thought he would be getting an ultrasound. Never happened. It was never even scheduled! We basically had an appointment to meet yet another doctor who would give us another possible medical issue to worry about. We were told because Benjamin had, and may still have, kidney stones, he could be susceptible to getting them over and over again. This doctor also said that has the potential to suffer kidney failure down the road given his medical history. I was told to have some concern, but to not be "overly concerned." Gee thanks. They tried to get a urine sample, but most of it ended up on my pants because the bag they put on him wasn't on correctly. I should mention that happened AFTER I was puked on. They wanted to get a blood test the same time as the urine sample so they were kind enough to give us our own bags and told us when we came back for our Complex Care appointment, we could give all the samples then. So basically I left that day with no answers, a cranky baby, throw up in my hair and down my shirt, and urine all over my pants. Thankfully my wonderful dad was with me because I think I would have screamed and cursed (well, I actually did, but he was there to keep me company and listen to me rant and rave).
Right now his eyes are worrying me. They're big and beautiful, but he's just not using them! I have been going crazy trying to figure out how he could go from tracking objects and his mobile months ago when he was in the hospital, to a blank stare. I was talking to his Perkins School teacher and we realized the deterioration in his vision occurred shortly after he started the neurological meds. It makes total sense. The drugs are used to "calm" the brain and reduce irritability and spasticity, but they probably don't calm only certain areas of the brain... so I'm convinced they're impacting his visual development. We actually saw Benjamin's ophthalmologist today and he said it's not out of the realm of possibility. He said he's seen adult vision affected by these meds and there's no reason not to believe they're related to some degree to Benjamin's vision problems. We have an appointment with Neurology on Thursday and I really want to see him weaned from these drugs. I know his neurologists are going to be hesitant about taking him off the drugs because they also have the benefit of preventing seizures. At least we can argue that Benjamin has been less irritable, which would be one pro for weaning the Neurontin. He still has his moments, don't get me wrong, but the time it takes to soothe him is getting shorter. His EI therapist saw him today and she said she saw a difference so I know it's not in my head. I will admit, I do have moments of insanity, but this was not one of them!
Quite a few people have been asking me how his Renal appointment went and we know the same now as we did before the appointment. I thought he would be getting an ultrasound. Never happened. It was never even scheduled! We basically had an appointment to meet yet another doctor who would give us another possible medical issue to worry about. We were told because Benjamin had, and may still have, kidney stones, he could be susceptible to getting them over and over again. This doctor also said that has the potential to suffer kidney failure down the road given his medical history. I was told to have some concern, but to not be "overly concerned." Gee thanks. They tried to get a urine sample, but most of it ended up on my pants because the bag they put on him wasn't on correctly. I should mention that happened AFTER I was puked on. They wanted to get a blood test the same time as the urine sample so they were kind enough to give us our own bags and told us when we came back for our Complex Care appointment, we could give all the samples then. So basically I left that day with no answers, a cranky baby, throw up in my hair and down my shirt, and urine all over my pants. Thankfully my wonderful dad was with me because I think I would have screamed and cursed (well, I actually did, but he was there to keep me company and listen to me rant and rave).
Saturday, January 1, 2011
January 1, 2011
A few days after my last post, we got the call that Benjamin's glasses had come in. I thought it was ironic that a friend of mine emailed me that very morning to tell me that it was Saint Lucia's day (she's the patron Saint of the blind) and that she said a prayer for Benjamin's eyes. His glasses weren't due in for another 4 or 5 weeks. I was thinking it was an omen and that we needed to get those glasses asap! On our way to pick them up I was filled with a bunch of different emotions... sadness because my baby had to wear glasses, excitement because maybe he could finally see, and nervousess because what if he couldn't. It took awhile for him to adjust to them and after about a week, we started seeing slight improvements. His eyes aren't crossing as much and certain things catch his attention (mostly shiny objects), But, he absolutely hates them. The wire frames leave marks on his little face and are always sliding down his nose. We've decided to get him another pair that are so flexible you can actually bend them. They'll be in next week, and I'm keeping my fingers crossed he doesn't scream when he has to wear them like he does now.
We've got a busy month of doctors' appointments. Monday we'll be going into Children's for an ultrasound on Benjamin's kidneys. Hopefully his kidney stones are gone. If not, I'm not sure what the course of action will be. Later this month we'll be meeting with opthamology, neurology and complex care.
Benjamin had his first therapy session in the pool a few weeks ago and did really well. His legs were very easy to move in the water and the therapist was able to give his muscles a good stretch. He did a lot better in the water than he does "on land." He has major problems when he is transitioned from one position to another. For example, if I calm him down in my arms and then gently put him on his back on the floor he is usually okay. However, as soon as I try to turn him onto his side, he flips out and will scream until he turns blue. It's also extremely hard to break his extention when he tenses up. When he's upset he'll throw his head back, arch his back and kick his legs out. We have to fight him and try and curl his body inward. Once we can break that extension, it's not as hard to calm him down.
Anyway, good riddance 2010! We were only three weeks into the year when I got the devastating news that I had twin to twin transfusion syndrome and it was downhill from there. Although I'm unbelievably grateful that this past year brought us Benjamin, I've never been more excited to see a year end. I'm hoping 2011 brings my family and friends good health and happiness. I can't wait to spend the summer with the kids down the Cape, like we should have been doing last year, and I'm looking forward to watching Benjamin reach his milestones and surpass everyone's expectations.
We've got a busy month of doctors' appointments. Monday we'll be going into Children's for an ultrasound on Benjamin's kidneys. Hopefully his kidney stones are gone. If not, I'm not sure what the course of action will be. Later this month we'll be meeting with opthamology, neurology and complex care.
Benjamin had his first therapy session in the pool a few weeks ago and did really well. His legs were very easy to move in the water and the therapist was able to give his muscles a good stretch. He did a lot better in the water than he does "on land." He has major problems when he is transitioned from one position to another. For example, if I calm him down in my arms and then gently put him on his back on the floor he is usually okay. However, as soon as I try to turn him onto his side, he flips out and will scream until he turns blue. It's also extremely hard to break his extention when he tenses up. When he's upset he'll throw his head back, arch his back and kick his legs out. We have to fight him and try and curl his body inward. Once we can break that extension, it's not as hard to calm him down.
Anyway, good riddance 2010! We were only three weeks into the year when I got the devastating news that I had twin to twin transfusion syndrome and it was downhill from there. Although I'm unbelievably grateful that this past year brought us Benjamin, I've never been more excited to see a year end. I'm hoping 2011 brings my family and friends good health and happiness. I can't wait to spend the summer with the kids down the Cape, like we should have been doing last year, and I'm looking forward to watching Benjamin reach his milestones and surpass everyone's expectations.
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