Where do I start... well, Ben has been in Children's for 11 days now with a nasty case of pneumonia. If you remember, this past January we got to stay in the ICU for about a week. This time we're about 5 rooms down in the ICP (basically the step-down ICU). The care up here on the 11th floor couldn't be better, and I've loved all the nurses and doctors we've met, but Ben needs to start holding his oxygen so he can come home! I tell you though, sitting in a hopsital all day is enough to drive a person insane.
I thought I may have been certifiable the other day. It was Ryan's birthday, he was holding Ben, and we were having a nice family moment... About half an hour later he went to put Ben in his crib and we noticed his g-tube fell out! Of course this would happen... because we had to liven up the night right? Have a real party. Anyway, I call out to Ben's nurse and she comes over and tells us that they (the nurses) are not allowed to put a new g-tube in. The good part is the parents can do it! That's just fine and dandy if it doesn't take forever and a day to get one delivered up to his room. Knowing how quickly the hole in his stomach could close I asked for a catheter to stick in the hole so it would stay open. Now I have no problem putting a new g-tube in, but the thought of sticking that catheter into Ben made me squirm. After Ryan and I were arguing back and forth with each other saying "You do it" "No, you do it" (while stomach contents leaked out of Ben), my wonderful husband (on his birthday nonetheless) shoved the catheter into the hole. Here's the part where me going certifiably insane makes sense - I was singing and doing a little jig to try and make light of the fact that our poor baby had to wait so long for a new tube and that stomach juices were apparently still coming out of the hole around the catheter and making Ryan's fingers all slimy. However, I should say Ben held his oxygen very nicely for that 45 minutes!
He was scheduled to come home yesterday. I was going over the discharge instructions when he decided to desat to 71. We weren't going anywhere after that. The oxygen delivery was already scheduled to arrive at our house that evening so I took Jadyn home. We had a long overdue girls' night while Ryan hung out with Ben.
I'm not crazy about having oxygen in the house, but unfortunately because Ben's been so ill, he's dependent on it now. Jadyn and I got the delivery last night and I think we were both overwelmed! Not only do we have 3 tanks (a mother tank and two little baby tanks in our living room), we have a compressor which is big and loud. This is what Ben's 50' tubing will be hooked up to all day/night. It constantly creates the o2. Jadyn's exact words: "I do not want this STUFF in my house!" I don't either kiddo, but if we want your brother home, then we need it. We were already told he won't be coming home tomorrow either so please pray that he gets better soon and we're out of here on Monday!
Saturday, May 26, 2012
Sunday, March 11, 2012
March 11, 2012
Happy 2nd Birthday to my sweet baby Benjamin and my little angel Stephen. I can't believe two years have passed already. We had a nice day with family, and Ben actually got to try a tiny bit of his cake! How can he eat cake when it's loaded with sugar you ask? Well, he's finally off the Ketogenic diet. I feel as though we gave it a good run, but it had been enough. It wasn't helping the seizures, and it was only making him more and more miserable each day.
In addition to quitting the diet, his neurologist has decided to wean Ben off his Phenobarbital. We were concerned with the fact that he's on too many seizure meds at this point and we don't know what's doing what (I'm honestly not sure any of them are helping). He's had a few irritable days dealing with withdrawal symptoms, but his energy level is coming back. He's trying to pick his head up more, and he kicks his legs like crazy when he's in his bouncy seat.
He's still having somewhere in the range of 40, sometimes 50 seizures a day (a couple of those are spasms which really make me depressed). We're not sure we'll ever be able to eliminate the seizures entirely, but I'm still hopeful we'll find that magic drug.
As usual Jadyn has been so patient and loving towards her brother. She's at that age where she's starting to question everything and I'm not talking about the usual "why is the sky blue?" We pray almost every night and she's been asking some great questions about God and her brothers. Some are easy to answer like "Did God have a cake for Stephen today?" My response "Of course he did!" Others are a little more invloved like "Why did God make Ben handicapped?" I started to get medical on this one, but then I stopped and told her that Ben is a fighter. I continued to tell her that he may have some problems, but he's with us for a reason and he's going to do great things. Not sure if that's the right answer, but it's what we believe.
Here's to Ben experiencing what I'm renaming the "Terrific Twos!"
In addition to quitting the diet, his neurologist has decided to wean Ben off his Phenobarbital. We were concerned with the fact that he's on too many seizure meds at this point and we don't know what's doing what (I'm honestly not sure any of them are helping). He's had a few irritable days dealing with withdrawal symptoms, but his energy level is coming back. He's trying to pick his head up more, and he kicks his legs like crazy when he's in his bouncy seat.
He's still having somewhere in the range of 40, sometimes 50 seizures a day (a couple of those are spasms which really make me depressed). We're not sure we'll ever be able to eliminate the seizures entirely, but I'm still hopeful we'll find that magic drug.
As usual Jadyn has been so patient and loving towards her brother. She's at that age where she's starting to question everything and I'm not talking about the usual "why is the sky blue?" We pray almost every night and she's been asking some great questions about God and her brothers. Some are easy to answer like "Did God have a cake for Stephen today?" My response "Of course he did!" Others are a little more invloved like "Why did God make Ben handicapped?" I started to get medical on this one, but then I stopped and told her that Ben is a fighter. I continued to tell her that he may have some problems, but he's with us for a reason and he's going to do great things. Not sure if that's the right answer, but it's what we believe.
Here's to Ben experiencing what I'm renaming the "Terrific Twos!"
Sunday, January 15, 2012
February 6, 2012
I've started and stopped this entry a few times because I had really hoped I would have some positive news to share, but Benjamin has had a tough 2012 so far. He acquired his first respiratory virus the beginning of January and we spent 6 nights in the hospital. I have to say, I was extremely impressed with the ICU at Children's. He went downhill quickly and they were able to manage his care beautifully. I think since Benjamin has been doing so well (from a respiratory standpoint) we underestimated how dangerous the implications of catching a cold/virus could be for him. We also had a false sense of security thinking that because he had his Synagis shot, he wouldn't get RSV. Come to find out, his pulmonogist said one shot wasn't going to cut it. But, I'm happy to say he's doing much better now!
We're still battling with the seizures. He's on yet another new med in addition to the diet (yes, he's STILL on the diet) with no change. If anything, they're getting worse again. It's unbelievably frustrating and sad. People ask what we can do while he's having them, and the answer is absolutely nothing. I spend a majority of my day making tick marks on a piece of paper. From the sounds of it, I think his Dr. is planning on starting another medication in a couple of weeks. There are only 1 or 2 left to try so please pray that one of these will work for him. Our little man needs to catch a break. Jadyn and I pray every night before bedtime for Benjamin's seizures to stop. She's one of his biggest supporters. She really loves her "buddy" as she so affectionately calls him now.
We're still battling with the seizures. He's on yet another new med in addition to the diet (yes, he's STILL on the diet) with no change. If anything, they're getting worse again. It's unbelievably frustrating and sad. People ask what we can do while he's having them, and the answer is absolutely nothing. I spend a majority of my day making tick marks on a piece of paper. From the sounds of it, I think his Dr. is planning on starting another medication in a couple of weeks. There are only 1 or 2 left to try so please pray that one of these will work for him. Our little man needs to catch a break. Jadyn and I pray every night before bedtime for Benjamin's seizures to stop. She's one of his biggest supporters. She really loves her "buddy" as she so affectionately calls him now.
Tuesday, December 20, 2011
December 20, 2011
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.
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.
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!
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