Showing posts with label epilepsy. Show all posts
Showing posts with label epilepsy. Show all posts
Friday, June 10, 2016
No More Medicine!
We have slowly been weaning Will from his medicine since December. When he had been down to 1 pill of Lamictal for 2 months, I called his Neurologist and he told us we were done with the meds. Wow. So incredible to actually be here at this point. Surreal. That was on Monday so we had big bowels of ice cream to celebrate that night and on Saturday we ordered Will's favorite pizza and made plans to watch The Force Awakens. I sure love that boy, and I am so incredibly grateful to be where we are today with him.
Friday, January 29, 2016
Samuel's EEG
Sam's EEG was today. I was really nervous about how he would handle it because even though he's pretty mellow and go-with-the-flow, he can also be a really spunky and feisty kid. He was only supposed to get 4-6 hours of sleep last night so I think that was really helpful in keeping him still, but I was worried it might go the other way and have him super angry and uncooperative. He laid very still and let the EEG Tech put all the electrodes on his head. He did his best to close his eyes and to blow on the pinwheel. When she asked him if he could try and fall asleep he nodded. She then asked if he wanted a pillow, he nodded. And lastly she asked if he wanted a blanket, he nodded. It took a few minutes but he fell right to sleep, thank goodness. I hated waking him up because I knew he was just so exhausted. But he had a pretty good attitude about that, and we washed his hair and went on to meet with the neurologist.
The neurologist read over his EEG and then gave us the results: epilepsy. Not surprising but still crappy to hear. We discussed different medications and things that had worked/helped with Will. We decided to start with depakote. I love/hate relationship with that drug. It helped so much with Will's seizures, but man, it is so hard on a body, especially the liver. Hopefully this will help with the atonic seizures he's been having and also hopefully hopefully hopefully prevent other seizures types from occurring. I will hang on to the hope that his seizures might not spiral out of control like Will's did. That his experience will be much much milder. That he will be able to grow out of this like we are hoping Will has/is. We go back in 3 months to meet with our neurologist, Dr. Ess. Hopefully this will work and we won't need to see him before that.
Sam cried almost the whole way back home. He was soo tired and really getting hungry. We stopped and got him a gravy and biscuit, cinnamon raisin biscuit, and an orange juice on the way home. I sat him in my lap and fed him till he decided I was moving too slow and took the fork and finished feeding himself. He ate pretty much all of it, and only shared a few bites with me. I love this little spunky boy so much. I hope I can be what he needs.
The neurologist read over his EEG and then gave us the results: epilepsy. Not surprising but still crappy to hear. We discussed different medications and things that had worked/helped with Will. We decided to start with depakote. I love/hate relationship with that drug. It helped so much with Will's seizures, but man, it is so hard on a body, especially the liver. Hopefully this will help with the atonic seizures he's been having and also hopefully hopefully hopefully prevent other seizures types from occurring. I will hang on to the hope that his seizures might not spiral out of control like Will's did. That his experience will be much much milder. That he will be able to grow out of this like we are hoping Will has/is. We go back in 3 months to meet with our neurologist, Dr. Ess. Hopefully this will work and we won't need to see him before that.
Sam cried almost the whole way back home. He was soo tired and really getting hungry. We stopped and got him a gravy and biscuit, cinnamon raisin biscuit, and an orange juice on the way home. I sat him in my lap and fed him till he decided I was moving too slow and took the fork and finished feeding himself. He ate pretty much all of it, and only shared a few bites with me. I love this little spunky boy so much. I hope I can be what he needs.
Monday, January 20, 2014
Weaning
We started weaning Will off of one of his medicines after the one year anniversary of him not having a seizure. His doctor instructed us on what to do, and it took about 3 months to have him completely off of it. His personality has changed a little. He is not as reserved around others and feels a little more confident, I think. His hand writing has improved as well. Not sure if this has something to do with less drugs in his system or just his hand muscles strengthening. He has struggled with that compared to a lot of his peers. It has almost been a week with no "pink medicine" as Will calls it. He is doing well, and we've not witnessed a seizure yet. Fingers crossed!!
Sunday, October 9, 2011
Back to Vanderbilt
Thursday morning (Sept 22nd), Will and Jack decided to make a ginormous mess in the brown sugar. I had to take off their clothes and then do some damage control because it was on the counter, floor, inside the oven, and the oven drawer. After cleaning the mess up, I proceeded to redress them. When it was Will's turn, I noticed the incision on his chest looked a little bit irritated towards the bottom. Since the boys had been running around shirtless and rowdy while I cleaned up the brown sugar mess, I thought maybe that had something to do with it. I called Patrick and he said it was probably no big deal. I decided I'd wait till after Will's nap and look at it again.
I checked after his nap and it still looked redder than normal, but looked better than it did earlier.
After dinner, Patrick gave the boys a bath. I was getting ready to go to a meeting, when Patrick let me know that one of the stitches looked like it was "leaking" a clear pus. We called Will's neurologist who told us to call the surgeon. He said it could be superficial meaning only a stitch had gotten infected, but that signs of infection usually show up around the 4th week post surgery (We were just shy a day of 4 weeks). The surgeons resident told us to take Will to Vanderbilt's ER. We called Mom and Joe who were headed to Rocky River, they immediately turned around and headed for our house. Feeling pretty guilty about leaving a very suspicious Jack, I decided to wait with him for Mom and Joe to arrive while Patrick went ahead and took Will to the ER. Before Mom and Joe arrived, Jack was sending me some pretty strong hints that he was staying with me, but luckily by the time they got there he was more than happy to leave with them.
Driving back to Vanderbilt was a bit surreal. There is a 1% infection rate with this surgery and in those cases the surgeons usually end up having to take the stimulator out. And once it comes out, there is no chance of getting it again. It is a "one and done" surgery. Fearing that if the infection was more than skin deep we would lose this incredible tool that had really helped in controlling and stopping so many of Will's seizures was a little hard to think about. So I tried really really hard to be optimistic and remember there was a Greater Power at work.
When I got to the ER, it was packed. I found Patrick and Will and started waiting with them. Despite being back at a hospital, Will was as happy and chipper (and silly) as ever. They had been there since about 8, and I had gotten there around 9. We did our best to make a bed using our legs and laps so Will could sleep while we waited (his usual bed time is 7:30). He did fall asleep, and about 20 min later they called him back. After seeing several doctors and a few nurses, we finally saw a couple neurosurgeons who decided we should stay and start some pretty intense antibiotics and take some blood cultures to determine white blood cell counts and things like that.
In the morning we met with the doctors and were told good news. It looked like the infection was superficial according to blood count levels, and that Will would go into surgery to have a p.i.c.c line put in place so we could administer antibiotics at home for 2 weeks. It was a little nerve-wracking, the idea of having a rambunctious almost 4 year old with something so delicate as a p.i.c.c. line in his arm. If I had been told this a few months earlier the task wouldn't have seemed as daunting since all Will did then was lay around mostly. But now he was almost as active and vibrant as most children his age, something I was not used to but relieved to get to experience again. While we were waiting for Will to go back into surgery, Will's neurosurgeon checked in on us and took a look at Will. He told us that we were pretty much doing over kill with all the antibiotics, but considering how if the infection did get inside his body we would lose the stimulator as an option, we needed to be extremely aggressive.
While Will was in surgery, we met with the a representative of the infusion company. She gave us a little mini course on how we would administer the medicine and take care of Will 's p.i.c.c. line. A little scary but she was very helpful and gave us all the information we would need.
Following Will's surgery, he was a hoot! The nurse taking care of him was highly flirted with. He told her he wanted to go home with her. When she let him know she had three daughters, Will said, a little dejectedly, "Never mind." Will still needed an X-ray done to make sure the p.i.c.c. line was where it was supposed to be. Somewhere between all of that, he snuck a kiss on the nurse. He's quite the charmer!
By the time there was a room available for us to stay the night in, it was close to 4 or 5. Although Will had been put to sleep, it still wasn't the same as really getting a good nap in. We ate dinner, and then went to do some of the few things that have helped us cope while being in the hospital: we visited the train display, walked outside to the court yard and fed the fish, then had Ben and Jerry's. After that, we headed back to our room for some much needed sleep. During all of our hospital stays we have learned how to speak up for Will's needs a little better. When we asked the nurses about what would be happening through the night, we were told a ridiculous amount of times they would need to wake him for medicines that (in our opinion) were not necessary. We tried to very clearly and nicely explain Will's need for sleep, and that we didn't want him awakened for anything that wasn't absolutely necessary. We've almost always had great nurses at Vanderbilt, and that night was no different. They were very respectful and passed the word along to the doctors caring for Will. Will did need antibiotics throughout the night, but the nurse who did this was amazing at coming in as soon as the pump started beeping, and sometimes before it started. So impressed with her!! And thankful for all the ones like her! Unfortunately over the past 48 hours, Will had just not gotten the necessary amount of sleep that his brain needs, and he awoke at 4:30 with a seizure. Thankfully it ended with no need to administer the rescue medicine.
The next morning, we met with the resident neurosurgeon who gave us the ok to go home, and continue the antibiotics at home. Feeling a little overwhelmed with medicine delivery times and a schedule of medicine that dictated preciseness, we headed home. But first we stopped on the 6th floor. While there I had checked Kelsi Caten's caring bridge website and found out that she and Rosanne were there. Fearing to wake anyone by calling, I went to just drop a note off at the nurses' station. Amazingly as the elevator doors opened up to the 6th floor, I saw Roseanne! We were able to talk for a few minutes about Kelsi's and Will's very different medical issues (Kelsi has been battling cancer). I have so appreciated Roseanne's strength as I've read Kelsi's website. It is always nice to visit with someone you love and respect even if it's just for a few minutes. I'm so happy it worked out that way. That I actually got to deliver my message myself.
Upon arriving home, I noticed that the nurse who discharged us didn't quite give us all the information we needed about when to administer Will's next dose of medicine, but once we got that cleared up (just a minor setback), we were doing pretty good. Will's medicines were vancomycin and meropenem. The vanc was taken every 6 hours and the meropenem was every 8. Getting used to that schedule was a bit tough, but Patrick and I make a great team. We did 6, 12, 6, 12 for the vanc and that usually took an hour long to empty. The meropenem was 7, 3, and 11, and it only took around 30 minutes. I liked that one a lot better. The other thing about the medicine was that it had to be kept in the refrigerator, but administered at room temperature. So an hour before the dose was to be given, we needed to set it out. It was very time and thought consuming process, but we were thankful to have this as an option so we could be home instead of in the hospital.
Those 2 weeks of course seemed like they dragged on and on. Patrick and I got very little sleep. But they ended, and we survived. The infection is gone and we are back to our "normal." And I am so very happy to be home and see both of my boys doing very well. We have Many many things to be thankful for.
I checked after his nap and it still looked redder than normal, but looked better than it did earlier.
After dinner, Patrick gave the boys a bath. I was getting ready to go to a meeting, when Patrick let me know that one of the stitches looked like it was "leaking" a clear pus. We called Will's neurologist who told us to call the surgeon. He said it could be superficial meaning only a stitch had gotten infected, but that signs of infection usually show up around the 4th week post surgery (We were just shy a day of 4 weeks). The surgeons resident told us to take Will to Vanderbilt's ER. We called Mom and Joe who were headed to Rocky River, they immediately turned around and headed for our house. Feeling pretty guilty about leaving a very suspicious Jack, I decided to wait with him for Mom and Joe to arrive while Patrick went ahead and took Will to the ER. Before Mom and Joe arrived, Jack was sending me some pretty strong hints that he was staying with me, but luckily by the time they got there he was more than happy to leave with them.
Driving back to Vanderbilt was a bit surreal. There is a 1% infection rate with this surgery and in those cases the surgeons usually end up having to take the stimulator out. And once it comes out, there is no chance of getting it again. It is a "one and done" surgery. Fearing that if the infection was more than skin deep we would lose this incredible tool that had really helped in controlling and stopping so many of Will's seizures was a little hard to think about. So I tried really really hard to be optimistic and remember there was a Greater Power at work.
When I got to the ER, it was packed. I found Patrick and Will and started waiting with them. Despite being back at a hospital, Will was as happy and chipper (and silly) as ever. They had been there since about 8, and I had gotten there around 9. We did our best to make a bed using our legs and laps so Will could sleep while we waited (his usual bed time is 7:30). He did fall asleep, and about 20 min later they called him back. After seeing several doctors and a few nurses, we finally saw a couple neurosurgeons who decided we should stay and start some pretty intense antibiotics and take some blood cultures to determine white blood cell counts and things like that.
In the morning we met with the doctors and were told good news. It looked like the infection was superficial according to blood count levels, and that Will would go into surgery to have a p.i.c.c line put in place so we could administer antibiotics at home for 2 weeks. It was a little nerve-wracking, the idea of having a rambunctious almost 4 year old with something so delicate as a p.i.c.c. line in his arm. If I had been told this a few months earlier the task wouldn't have seemed as daunting since all Will did then was lay around mostly. But now he was almost as active and vibrant as most children his age, something I was not used to but relieved to get to experience again. While we were waiting for Will to go back into surgery, Will's neurosurgeon checked in on us and took a look at Will. He told us that we were pretty much doing over kill with all the antibiotics, but considering how if the infection did get inside his body we would lose the stimulator as an option, we needed to be extremely aggressive.
While Will was in surgery, we met with the a representative of the infusion company. She gave us a little mini course on how we would administer the medicine and take care of Will 's p.i.c.c. line. A little scary but she was very helpful and gave us all the information we would need.
Following Will's surgery, he was a hoot! The nurse taking care of him was highly flirted with. He told her he wanted to go home with her. When she let him know she had three daughters, Will said, a little dejectedly, "Never mind." Will still needed an X-ray done to make sure the p.i.c.c. line was where it was supposed to be. Somewhere between all of that, he snuck a kiss on the nurse. He's quite the charmer!
By the time there was a room available for us to stay the night in, it was close to 4 or 5. Although Will had been put to sleep, it still wasn't the same as really getting a good nap in. We ate dinner, and then went to do some of the few things that have helped us cope while being in the hospital: we visited the train display, walked outside to the court yard and fed the fish, then had Ben and Jerry's. After that, we headed back to our room for some much needed sleep. During all of our hospital stays we have learned how to speak up for Will's needs a little better. When we asked the nurses about what would be happening through the night, we were told a ridiculous amount of times they would need to wake him for medicines that (in our opinion) were not necessary. We tried to very clearly and nicely explain Will's need for sleep, and that we didn't want him awakened for anything that wasn't absolutely necessary. We've almost always had great nurses at Vanderbilt, and that night was no different. They were very respectful and passed the word along to the doctors caring for Will. Will did need antibiotics throughout the night, but the nurse who did this was amazing at coming in as soon as the pump started beeping, and sometimes before it started. So impressed with her!! And thankful for all the ones like her! Unfortunately over the past 48 hours, Will had just not gotten the necessary amount of sleep that his brain needs, and he awoke at 4:30 with a seizure. Thankfully it ended with no need to administer the rescue medicine.
The next morning, we met with the resident neurosurgeon who gave us the ok to go home, and continue the antibiotics at home. Feeling a little overwhelmed with medicine delivery times and a schedule of medicine that dictated preciseness, we headed home. But first we stopped on the 6th floor. While there I had checked Kelsi Caten's caring bridge website and found out that she and Rosanne were there. Fearing to wake anyone by calling, I went to just drop a note off at the nurses' station. Amazingly as the elevator doors opened up to the 6th floor, I saw Roseanne! We were able to talk for a few minutes about Kelsi's and Will's very different medical issues (Kelsi has been battling cancer). I have so appreciated Roseanne's strength as I've read Kelsi's website. It is always nice to visit with someone you love and respect even if it's just for a few minutes. I'm so happy it worked out that way. That I actually got to deliver my message myself.
Upon arriving home, I noticed that the nurse who discharged us didn't quite give us all the information we needed about when to administer Will's next dose of medicine, but once we got that cleared up (just a minor setback), we were doing pretty good. Will's medicines were vancomycin and meropenem. The vanc was taken every 6 hours and the meropenem was every 8. Getting used to that schedule was a bit tough, but Patrick and I make a great team. We did 6, 12, 6, 12 for the vanc and that usually took an hour long to empty. The meropenem was 7, 3, and 11, and it only took around 30 minutes. I liked that one a lot better. The other thing about the medicine was that it had to be kept in the refrigerator, but administered at room temperature. So an hour before the dose was to be given, we needed to set it out. It was very time and thought consuming process, but we were thankful to have this as an option so we could be home instead of in the hospital.
Those 2 weeks of course seemed like they dragged on and on. Patrick and I got very little sleep. But they ended, and we survived. The infection is gone and we are back to our "normal." And I am so very happy to be home and see both of my boys doing very well. We have Many many things to be thankful for.
Friday, August 26, 2011
Will's Surgery
After a lot of praying, fasting, talking, and a lot more praying and talking, we decided to move ahead with Will's scheduled VNS surgery. He got to ride to the surgery room in a cozy coupe to lighten some of the anxiety over the surgery, which I think is a brilliant idea. The surgery then began around 10:30 and was over about 12:30. I was so anxious for it to be over. We met with Dr. Pearson, the neurosurgeon, and he was very pleased with the way it went. He gave us our instructions, and we were able to go see Will shortly after that. He was still very groggy from the anesthesia and didn't want mommy to hold him, but dad. Surprise surprise (I'm starting to get a little jealous).
We are now in our room for the night (hopefully) for observation, and will go home tomorrow. Will laid in the bed for most of the afternoon. At one point he thought he might get up, but then when he felt too much pain and decided he'd better just stay put. They made 2 incisions. One on his neck to get to the vagus nerve and one on his chest to implant the stimulator. Papa J came by for a visit and we have stayed busy since playing Thomas the Train UNO and Will taking silly pictures of Patrick. We again are so so thankful for all the prayers and thoughts for Will and our family. DON'T STOP! :) Seriously. Please please don't.
Something sweet Will said that I didn't want to forget while we were waiting for the surgery was, "I miss Jack. I want him to come to Vanderbilt." I for one hope he never needs to come here, but can appreciate the sentiment. We all miss him but know he's in the best of hands. And one more thing. In the picture of me and Will I told Will to say, "I love Mommy!" but he chose to say, "I love m&ms!!" Stinker!
We are now in our room for the night (hopefully) for observation, and will go home tomorrow. Will laid in the bed for most of the afternoon. At one point he thought he might get up, but then when he felt too much pain and decided he'd better just stay put. They made 2 incisions. One on his neck to get to the vagus nerve and one on his chest to implant the stimulator. Papa J came by for a visit and we have stayed busy since playing Thomas the Train UNO and Will taking silly pictures of Patrick. We again are so so thankful for all the prayers and thoughts for Will and our family. DON'T STOP! :) Seriously. Please please don't.
Saturday, August 20, 2011
Home Again
Thursday morning Will had his blood drawn to check his blood levels for the medicine. From 7 to 10 we noticed 8 seizures. 8 seizures in 3 hours! Normally we would see 8 seizures in less than 10 minutes. It was this remarkable change in seizure activity that led to Dr. Wheless' decision to send us home. Will's blood levels were only at 30. The Dr. wants to see them at 100. So he has added an extra dose of medicine to be given. We are supposed to go on Monday and have his blood drawn and levels checked then faxed to him.
After speaking with the Dr. he gave the go ahead to have the electrodes removed from Will's head. Will was not excited about this. Imagine having 30 small metal circles super glued to your scalp. Most of them came off pretty easily with a solution they use, but some of them were really fastened on. His head was very tender and very aggravated where the electrodes had been. We gave him his first bath since Saturday night and tried to shampoo the rest of the glue out. We were mostly successful, but he still has some white spots that look like he has been painting and gotten it all in his hair.
We were discharged at 4 and were home by 9. We met some other families that were dealing with seizures/epilepsy all varying in their severity. The first was a little boy Will's age who had had seizures since he was a baby. He is still yet to utter his first word. A 14 year old girl who has had tonic clonic seizures since she was 18 months old. They were from North Carolina and had previously spent 9 days at the Cleveland Clinic. Then there was an 8 year old girl from Little Rock. Bailey. She was so weak she needed to be pushed around in a stroller. Not only was she battling epilepsy, but cancer too. I didn't meet her mother, but her father made a really big impression on me. He was so patient, so kind, so positive with her. I can't imagine how tired and worried he must be. But he didn't let it show, and that in and of itself is exhausting. As we talked he told me they had been in the hospital the previous week and sent home on Friday. However after they got home her seizures became so out of control they had to be readmitted. Bailey and her family are now a part of our prayers.
We have been home for almost 2 days. Will is still having 10-15 seizures a day. He seems to be tolerating the high dosage fairly well. We have noticed a new rash on his legs. The Dr. said typically allergic reactions start on the abdomen or ribs. This was the case when Will was prescribed cefdinir, and he itched really badly. We are just to keep an eye on it for now. While we are not "out of the woods" yet it is good to be home and altogether again. Will and Jack really missed each other and are happy to be get to play together...mostly.
After speaking with the Dr. he gave the go ahead to have the electrodes removed from Will's head. Will was not excited about this. Imagine having 30 small metal circles super glued to your scalp. Most of them came off pretty easily with a solution they use, but some of them were really fastened on. His head was very tender and very aggravated where the electrodes had been. We gave him his first bath since Saturday night and tried to shampoo the rest of the glue out. We were mostly successful, but he still has some white spots that look like he has been painting and gotten it all in his hair.
We were discharged at 4 and were home by 9. We met some other families that were dealing with seizures/epilepsy all varying in their severity. The first was a little boy Will's age who had had seizures since he was a baby. He is still yet to utter his first word. A 14 year old girl who has had tonic clonic seizures since she was 18 months old. They were from North Carolina and had previously spent 9 days at the Cleveland Clinic. Then there was an 8 year old girl from Little Rock. Bailey. She was so weak she needed to be pushed around in a stroller. Not only was she battling epilepsy, but cancer too. I didn't meet her mother, but her father made a really big impression on me. He was so patient, so kind, so positive with her. I can't imagine how tired and worried he must be. But he didn't let it show, and that in and of itself is exhausting. As we talked he told me they had been in the hospital the previous week and sent home on Friday. However after they got home her seizures became so out of control they had to be readmitted. Bailey and her family are now a part of our prayers.
We have been home for almost 2 days. Will is still having 10-15 seizures a day. He seems to be tolerating the high dosage fairly well. We have noticed a new rash on his legs. The Dr. said typically allergic reactions start on the abdomen or ribs. This was the case when Will was prescribed cefdinir, and he itched really badly. We are just to keep an eye on it for now. While we are not "out of the woods" yet it is good to be home and altogether again. Will and Jack really missed each other and are happy to be get to play together...mostly. |
We are so grateful for the many thoughts, prayers, fasting, gifts, and deeds that have been offered and given for Will's and our behalf. It is overwhelming at times. Very humbling. There are many who have offered and done so much--without being asked. just trying to lighten our load. We love each of you and are so thankful for you. Again and again we have been reminded of what Spencer W. Kimball said,
"God does notice us, and he
watches over us. But it is usually through
another person that he meets our needs.
Therefore, it is vital that we serve each other...
So often, our acts of service consist of simple
encouragement or of giving mundane help
with mundane tasks, but what glorious
consequences can flow from mundane acts
and from small but deliberate deeds!"
Wednesday, August 17, 2011
Le Bonheur Day 3
William is still having lots seizures, but we think they are starting to decrease. He had to have his blood drawn this morning in order to check the levels of the medicine in his blood. It was a lot lower than what Dr. Wheless wants so we had to add a dose of Depakote soon after that. The medicine tends to make Will very sleepy at such high doses. But we do think it is helping, but won't know the full effectiveness of the medicine until after a week of him being on it.
This morning Will took an IQ/developmental test. He enjoyed every minute of it. He really liked the lady administering the test. It was a series of games, objects, drawing, and matching. It was so fun to see him smiling and proud of himself. He was having some absence seizures during the test so sometimes he was confused on what she was asking him to do. And because of the extra dose of medicine he had to take even more sleepy.
Will spends a lot of his time in the playroom. Will's favorite thing to do right now is put all the puzzles together. He also likes for Patrick to push him around on the ride-on toys.
Dr. Wheless came in and spoke with us about the frequency of Will's seizures and the medicines side effects and such. He is encouraged, as are we by the some what small difference they seem to be making so far. Every time he comes he asks Will if has been enjoying eating. We talked about Will's scheduled VNS surgery again today. Dr. W. says if we were to go ahead and pursue that it wouldn't be unreasonable. That is scheduled for next Friday at Vanderbilt. We have a tough decision to make, but not today.
After Will fell asleep Patrick and I explored the hospital. It is new, just a little over 6 months, I think. We found the chapel area and I was touched at all the ways they had tried to represent all religions. There are beautiful paintings, quiet rooms, praying rooms. As we came to this area we immediately quit talking. It had a very reverent feeling to it. We have been very impressed with Le Bonheur.
Overall Will had his best day since being admitted. Even though he is sleepy, he is happy! Really, really happy. This evening we saw a huge decrease in seizures. We are grateful. Really, really grateful.
This morning Will took an IQ/developmental test. He enjoyed every minute of it. He really liked the lady administering the test. It was a series of games, objects, drawing, and matching. It was so fun to see him smiling and proud of himself. He was having some absence seizures during the test so sometimes he was confused on what she was asking him to do. And because of the extra dose of medicine he had to take even more sleepy.
Will spends a lot of his time in the playroom. Will's favorite thing to do right now is put all the puzzles together. He also likes for Patrick to push him around on the ride-on toys. Dr. Wheless came in and spoke with us about the frequency of Will's seizures and the medicines side effects and such. He is encouraged, as are we by the some what small difference they seem to be making so far. Every time he comes he asks Will if has been enjoying eating. We talked about Will's scheduled VNS surgery again today. Dr. W. says if we were to go ahead and pursue that it wouldn't be unreasonable. That is scheduled for next Friday at Vanderbilt. We have a tough decision to make, but not today.
After Will fell asleep Patrick and I explored the hospital. It is new, just a little over 6 months, I think. We found the chapel area and I was touched at all the ways they had tried to represent all religions. There are beautiful paintings, quiet rooms, praying rooms. As we came to this area we immediately quit talking. It had a very reverent feeling to it. We have been very impressed with Le Bonheur.
Overall Will had his best day since being admitted. Even though he is sleepy, he is happy! Really, really happy. This evening we saw a huge decrease in seizures. We are grateful. Really, really grateful.
Tuesday, August 16, 2011
LB Day 2
Tuesday has been more of the same. Lots of seizures. After viewing the video of Will along with his ongoing EEG, Dr. W. has decided to change up Will's medicines. Depakote and ethosuximide. He feels encouraged that this combination should make a pretty good impact. Will it be good enough though we don't know. Will is still happy and pretty easy to get along with.
A few highlights from the day:
-The playroom is Will's favorite place. Even though the floor looks like your typical hospital floor it is some kind of absorbent flooring so if a child falls on it like during a seizure it absorbs the impact. Pretty cool and a lot less worry for mommy and daddy.
- Will had his first Peanut Butter and Jelly Sandwich in 2+ months! He even ate the crust. When he saw the sandwich he said, "I get to eat these whole 2 sandwiches?!" It was one sandwich cut in half. On the ketogenic diet, Will would be lucky to get a quarter of a slice of bread, spread so heavy with butter and oils it would practically be soggy.
- Right before Will's nap the Arkansas State football players stopped by to check on him. They were really BIG guys. Will kept his eye on them and smiled and even showed them his muscles. I can't believe I didn't get their picture with him.
- Will received a beautiful soft fleece blanket that some one makes a donates for the children in the EMU. He loves snuggling with it.
- Still a lot of seizures, but we think we can see a small decrease. We are cautiously optimistic.
A few highlights from the day:
-The playroom is Will's favorite place. Even though the floor looks like your typical hospital floor it is some kind of absorbent flooring so if a child falls on it like during a seizure it absorbs the impact. Pretty cool and a lot less worry for mommy and daddy.
- Will had his first Peanut Butter and Jelly Sandwich in 2+ months! He even ate the crust. When he saw the sandwich he said, "I get to eat these whole 2 sandwiches?!" It was one sandwich cut in half. On the ketogenic diet, Will would be lucky to get a quarter of a slice of bread, spread so heavy with butter and oils it would practically be soggy. - Right before Will's nap the Arkansas State football players stopped by to check on him. They were really BIG guys. Will kept his eye on them and smiled and even showed them his muscles. I can't believe I didn't get their picture with him.
- Will received a beautiful soft fleece blanket that some one makes a donates for the children in the EMU. He loves snuggling with it.
- Still a lot of seizures, but we think we can see a small decrease. We are cautiously optimistic.
Saturday, August 13, 2011
More Prayers for Will
On Thursday, August 11, I sent this email to family and some close friends.
The following day, Karen called to let me know we would be admitted first thing Monday morning. I am so grateful that all the pieces fell into place right at the last minute. Thanks be to God and for all the prayers of faith that were offered.
We know there have been many prayers said for Will and our family by each of you over the past few months. Thank you! Thank you! Thank you! He needs more.
Will's neurologist has been trying to get Will into Le Bonheur over the past couple weeks. Will is scheduled for VNS surgery at the end of this month (26th), but our Dr. thinks it's in our best interest to see what the neurologists, specifically Dr. Wheless, at Le Bonheur think Will needs. Patrick just spoke to Dr. Wheless' nurse, Karen. He is out of town and she didn't mention when he would be back exactly, but we do know he will be back before next week because he will be over the EMU (epilespy monitoring unit). According to Karen the EMU is full right now but there are empty beds. Depending on how busy Dr. Wheless wants to be next week will determine whether he will admit us. There are 2 other children vying for a spot in the EMU as well as Will right now. Karen said that Will is having A LOT more seizures than the other children though so that is in our favor. Dr. Wheless will let Karen know in the morning whether or not he will admit Will.
Patrick hinted around with the nurse about the possibility of just showing up at the ER with Will and what the possibility of us being admitted that way might be. She couldn't tell us to do that, but in a round-about way said not to rule it out.
We are in a major time crunch.Patrick has/will be accepting a new job with Cracker Barrel in the next few days. While the insurance with CB is comparable to what we have now, we have met Will's deductible with our current insurance. Whatever can be done for Will needs to be done by the end of the month.
Please keep praying for Will and that we will be able to get into the EMU first thing next week.
Love,
Lori
The following day, Karen called to let me know we would be admitted first thing Monday morning. I am so grateful that all the pieces fell into place right at the last minute. Thanks be to God and for all the prayers of faith that were offered.
Wednesday, August 3, 2011
Here We Go Again
We were getting a little nervous by Saturday evening that Will was too ketotic. We gave him 15 mls of apple juice hopping that would do the trick to get him eating again and not so sleepy. Unfortunately it didn't help. Will went to bed at his usual 7:30 bed time and we hoped we would have better luck in the morning.
A little after 10 p.m., Will woke up having a seizure. It lasted for about 3-4 minutes. Then he went back to sleep. Almost exactly an hour later he woke up with another one with about the same duration. When he woke up with another one around 1 a.m., we called Dr. Sharpe. When we didn't hear anything back from him, we made the decision to administer the rescue medicine if he had another one before the necessary time that we would normally give it, hoping that it would be enough to calm down his brain. At around 2:30 we went forward with our plan when Will had another seizure. The medicine stopped the seizure, and we hoped it would be the last. But it wasn't. About 2 hours later he had another, though not as violent as the previous ones or as long. This happened 2 more times before 9 on Sunday morning. We called Will's neurologist back around 7ish. He called back maybe 30 minutes later. He was calling from out of town and wherever he was staying had really poor reception so he hadn't been able to call us back in the middle of the night. He had found a pay phone to return our call that morning and apologized profusely and then gave us some ideas to try with Will (LOVE HIM!!!). He asked us to call him back in a few hours and let him know how things were going, and told us that if Will didn't start eating we might need to take him to Vanderbilt. We did not want to do that! We desperately searched for things for Will to eat. We even read a book that day on the ketogenic diet searching for ideas and answers. Seizures can be such a viscous cycle because so many things can increase the chances for having one. Then once you have one, you are that much more likely to have another, then another and on and on. We read that actually being too ketotoic can cause more seizures just like some medicines can do for some people. This is our theory of what happened with Will. We tried a few different things and were finally able to get him eating and not vomiting any more.
When I spoke with the doctor again he asked if I felt like things were improving enogh to not go to the hospital. I said yes and he gave me instructions to call him right back Will had any more seizures, and call him Monday morning regardless of what happened during the night.
Sunday night was another long night filled with seizures every few hours. We were able to get him to start eating more on Monday, and I stated feeling confident again that we just needed to keep on with the diet and we could resume seizure freedom again. Monday night he had a few more though not as violent. Then on Tuesday the atonic(drop) and myoclonic(jerks) seizures came back. Ahh!!! I called the doctor to see about moving up Will's VNS surgery date. It was currently scheduled for September 26th. He thought that was a good idea. He also suggested trying to get in Le Bonheurs Epilepay Monitoring Unit, and maybe even Miami's. He said that both hospitals were much more aggssive in treating epilepsy than Vanderbilt. We discussed a few more treatment alternatives. I asked him to go ahead and start trying to get us in at Le Bonheur, and I would try and move up the surgery date, which I was able to do. It is now scheduled for August 26th. It can't get here soon enough!!
A little after 10 p.m., Will woke up having a seizure. It lasted for about 3-4 minutes. Then he went back to sleep. Almost exactly an hour later he woke up with another one with about the same duration. When he woke up with another one around 1 a.m., we called Dr. Sharpe. When we didn't hear anything back from him, we made the decision to administer the rescue medicine if he had another one before the necessary time that we would normally give it, hoping that it would be enough to calm down his brain. At around 2:30 we went forward with our plan when Will had another seizure. The medicine stopped the seizure, and we hoped it would be the last. But it wasn't. About 2 hours later he had another, though not as violent as the previous ones or as long. This happened 2 more times before 9 on Sunday morning. We called Will's neurologist back around 7ish. He called back maybe 30 minutes later. He was calling from out of town and wherever he was staying had really poor reception so he hadn't been able to call us back in the middle of the night. He had found a pay phone to return our call that morning and apologized profusely and then gave us some ideas to try with Will (LOVE HIM!!!). He asked us to call him back in a few hours and let him know how things were going, and told us that if Will didn't start eating we might need to take him to Vanderbilt. We did not want to do that! We desperately searched for things for Will to eat. We even read a book that day on the ketogenic diet searching for ideas and answers. Seizures can be such a viscous cycle because so many things can increase the chances for having one. Then once you have one, you are that much more likely to have another, then another and on and on. We read that actually being too ketotoic can cause more seizures just like some medicines can do for some people. This is our theory of what happened with Will. We tried a few different things and were finally able to get him eating and not vomiting any more.
When I spoke with the doctor again he asked if I felt like things were improving enogh to not go to the hospital. I said yes and he gave me instructions to call him right back Will had any more seizures, and call him Monday morning regardless of what happened during the night.
Sunday night was another long night filled with seizures every few hours. We were able to get him to start eating more on Monday, and I stated feeling confident again that we just needed to keep on with the diet and we could resume seizure freedom again. Monday night he had a few more though not as violent. Then on Tuesday the atonic(drop) and myoclonic(jerks) seizures came back. Ahh!!! I called the doctor to see about moving up Will's VNS surgery date. It was currently scheduled for September 26th. He thought that was a good idea. He also suggested trying to get in Le Bonheurs Epilepay Monitoring Unit, and maybe even Miami's. He said that both hospitals were much more aggssive in treating epilepsy than Vanderbilt. We discussed a few more treatment alternatives. I asked him to go ahead and start trying to get us in at Le Bonheur, and I would try and move up the surgery date, which I was able to do. It is now scheduled for August 26th. It can't get here soon enough!!
Friday, July 29, 2011
One Week
Will has gone one full week without any seizures! It has been so amazing to not have to see even one. I am so thankful for this diet. Even though it is hard, it is worth it to have our William back. The past few days he has been refusing some meals which is completely scary and frustrating. Scary because if Will decides he doesn't want to cooperate anymore we could go back to seizures every few minutes...that terrifies me, but I try not to think too much about all the "what ifs," and just be thankful for the here and now.
Sunday, July 17, 2011
Keto Kid
When all the doctors and nurses are telling you, "This is a hard diet." believe them. And believe them we did, we just could not have imagined how hard it would be.
Will's favorite things to eat before the diet were things like peanut butter and jelly, gravy and biscuit, pancakes, pizza, oatmeal with blueberries, i.g. After starting the diet: hot dogs, peanut butter (with lots of extra butter), coconut oil and fruit, whipping cream with MCT oil and stevia and vanilla flavoring (I think this tastes pretty darn good myself), ranch (LOTS) with butter added in and a (VERY) few pieces of chicken, and scrambled eggs literally swimming in butter. That's not all he eats, but pretty much. He has lost about 5lbs and sometimes can't understand why Jack gets to have seconds or a piece of bread; that is really hard for me to explain and live with.
When we first started preparing meals for Will, it would usually take 30 minutes to an hour. The reason for this is because everything has to be weighed on a gram scale. If he can have 33 grams of eggs I have to crack it, whip it, then measure it out on the scale to be exactly 33.0 grams; no more, no less. Then measure milk out to 10g, add some whipping cream measured in grams, a few grams of cheese, and a whole lot of grams of butter; it is intense in the kitchen 'round here! But we are getting better.
Will has been remarkably easy to get a long with. I attribute that to lots of prayers. He is still having seizures, but most days I can count them on 1-2 hands. Every week I'm emailing or calling the dietitian and tweaking his diet for his needs. Recently we had to add 10g of MCT oil to every meal to get the ratio higher. That oil is a godsend. It is tasteless, odorless, and doesn't leave a oily residue in your mouth. A lot of times it is the only way we can get the fat high enough for Will's meals. Every morning and afternoon we check Will's ketones. He pees on a little stick so we know how ketotic he is. 160 -180 is the goal. Jack makes me laugh when he goes into the bathroom and says "ketones, ketones," meaning he wants to check his ketones. Oh how I pray I never have to check his ketones!
On Saturday the boys got haircuts and it's customary to get a sucker after you finish. Jack went first and before we could tell the lady not to offer one, she offered. We didn't have the heart to tell Jack no; his life has changed in a big way too. I was sitting by Will and he expectantly and hopefully looked at me. I reminded him about his "magic" diet and that I knew he'd like to have a sucker, but that wasn't good for him. I instead offered to take him to Publix after his haircut, and let him pick out some jello (sugar free mixed with whipping cream). He happily agreed, and my heart broke yet was full with love for this little boy and our Heavenly Father. How good He is. How merciful, how patient, how kind...
Will's favorite things to eat before the diet were things like peanut butter and jelly, gravy and biscuit, pancakes, pizza, oatmeal with blueberries, i.g. After starting the diet: hot dogs, peanut butter (with lots of extra butter), coconut oil and fruit, whipping cream with MCT oil and stevia and vanilla flavoring (I think this tastes pretty darn good myself), ranch (LOTS) with butter added in and a (VERY) few pieces of chicken, and scrambled eggs literally swimming in butter. That's not all he eats, but pretty much. He has lost about 5lbs and sometimes can't understand why Jack gets to have seconds or a piece of bread; that is really hard for me to explain and live with.
When we first started preparing meals for Will, it would usually take 30 minutes to an hour. The reason for this is because everything has to be weighed on a gram scale. If he can have 33 grams of eggs I have to crack it, whip it, then measure it out on the scale to be exactly 33.0 grams; no more, no less. Then measure milk out to 10g, add some whipping cream measured in grams, a few grams of cheese, and a whole lot of grams of butter; it is intense in the kitchen 'round here! But we are getting better.
Will has been remarkably easy to get a long with. I attribute that to lots of prayers. He is still having seizures, but most days I can count them on 1-2 hands. Every week I'm emailing or calling the dietitian and tweaking his diet for his needs. Recently we had to add 10g of MCT oil to every meal to get the ratio higher. That oil is a godsend. It is tasteless, odorless, and doesn't leave a oily residue in your mouth. A lot of times it is the only way we can get the fat high enough for Will's meals. Every morning and afternoon we check Will's ketones. He pees on a little stick so we know how ketotic he is. 160 -180 is the goal. Jack makes me laugh when he goes into the bathroom and says "ketones, ketones," meaning he wants to check his ketones. Oh how I pray I never have to check his ketones!
On Saturday the boys got haircuts and it's customary to get a sucker after you finish. Jack went first and before we could tell the lady not to offer one, she offered. We didn't have the heart to tell Jack no; his life has changed in a big way too. I was sitting by Will and he expectantly and hopefully looked at me. I reminded him about his "magic" diet and that I knew he'd like to have a sucker, but that wasn't good for him. I instead offered to take him to Publix after his haircut, and let him pick out some jello (sugar free mixed with whipping cream). He happily agreed, and my heart broke yet was full with love for this little boy and our Heavenly Father. How good He is. How merciful, how patient, how kind...
Tuesday, June 28, 2011
Vanderbilt, More Medicine, and a New Diet
After trying unsuccessfully for a little over a month to get Will's seizures under control, Will's amazing neurologist, Dr. Sharpe, met us at Vanderbilt Friday evening. For the past several days when Will would wake up from his nap he would have clustered seizures for at least an hour but usually longer. When the seizures wouldn't stop despite the increase in medicine, he told us to meet him there and we would try to get the seizures under control. Thankfully Mandy and her family were at our house so we had someone we trusted and Jack trusted to leave him with. That was a huge blessing despite the chaos, and I'm so thankful it worked out that way.
We loaded up the car and headed to Vanderbilt. We walked into the ER entrance right after Dr. Sharpe and were able to be seen almost immediately. We talked about the course we would be pursuing to find the right drug for Will. The hospital had no rooms for Will so we would be staying the night in the observation unit located close to the ER. But first Will had to get an IV so we could check blood levels for drug toxicity and administer ativan, a drug they use sometimes to try and stop seizures-- Think valium. The first time the nurses tried to start the IV they poked through the vein collapsing it. This must have made them only more nervous/flustered considering the heart breaking cries of a 3 1/2 year old who doesn't understand what's happening, because it wasn't till the 4th attempt the nurses were finally able to get the needle in. That was pure torture for Will, Patrick, and me. If we had it to do over again we would have asked for someone else to come in and try. Lesson learned. Will was given his ativan and vitamin b6 and we were sent to his room. We met the nurse there and while she was very very nice she didn't quit coming in until after 1 a.m. I understand the need to come in and get everything in order but just coming in over and over again because you keep forgetting to do things...that would be frustrating for any child/parent who are at the hospital, when your child's seizures are increased because of a lack of sleep--maddening. Anyway. Because the ativan makes you feel soooo good Will wasn't easy to get to sleep. I eventually had to hold him standing up and rock him. The 36lbs of 3 1/2 year old finally went to sleep. I offered my heartfelt thanks that I didn't have to do that any longer, and how thankful I was to be there so we could get the help he needed.
The next 3 days went about the same; Seizures every 2-3 minutes, and different medicine combinations (euthosuximide, phenobarbital, banzel, clobazem, dilantin, felbamate, zonegran, keppra, depakote, vitamin b6). Nothing seemed to help. Needless to say we were getting pretty discouraged.
On Tuesday morning when Dr. Sharpe came by to make his morning rounds we decided to take a new course of action. We knew that when you try 3 anticonvulsants and they don't work the likelihood goes down dramatically of finding anything that will work to 33% then after the 4th it goes to 11% (if I'm remembering correctly). We discussed VNS surgery. "The procedure goes as follows: an incision is made in the upper left chest and the generator is implanted into a little "pouch" on the left chest under the clavicle. A second incision is made in the neck, so that the surgeon can access the vagus nerve. The surgeon then wraps the leads around the left branch of the vagus nerve, and connects the electrodes to the generator. Once successfully implanted, the generator sends electric impulses to the vagus nerve at regular intervals. The left vagus nerve is stimulated rather than the right because the right plays a role in cardiac function such that stimulating it could have negative cardiac effects" (info from wikipedia). It is an adjunctive treatment for certain types of epilepsy. I don't remember all of the statistics surrounding VNS, I just remember that it might help but it might not and that it is very expensive and insurance would have to "ok" it first. So in the meantime the doctor suggested trying the Ketogenic Diet. We were familiar with the diet and had done a little reading on it because we knew it might likely be something we would have to try. So our prayer became at that point that our insurance would give the "ok" for us to stay in the hospital so the dietitian could teach us how to do it, and we'd have her right there to help and ask questions.We met with Ms. Mary (love her!) a couple hours before lunch, and she told us to order him a pizza (his last one :( and we would start a 1:1 ratio (1 fat:1 carb) at dinner. We would then increase over the next few meals up to 3:1. The classic keto diet is 4:1 but they try 3:1 first because it often will be enough.
The next 2 1/2 days went pretty much the same: Begging Will to eat, Will throwing up, Will refusing his meds (we no longer could give him liquid medicine because those contain sugar. We had to crush the pills add water and syringe), and fewer and fewer seizures! It was amazing. We could actually keep track of how many he was having, and they were significantly down.
Thursday we were discharged and almost as unprepared for what it would be like to continue the keto diet at home, as we were when we brought Will home as a newborn. It was a tad scary.
We were so grateful that Mom and Mandy took such great care of Jack. He loves them both so much, and so do we. We missed him but knew he was having more fun with them then he had probably had in 6 weeks. Will's situation had kept us pretty much home bound and inside. I know there were so many prayers and many people fasting for Will and our family, along with other kind and generous acts of service. Your prayers and ours were answered. Maybe not the way we thought was best, but he laughs! What gratitude we have we could never form into eloquent sentences. But thank you. Thank you. Thank you. Our cup truly "runneth over."
Friday, June 10, 2011
The Month of May
This month seems to bring a lot of weight with it. Before becoming a Mom I always associated it with my half birthday. After it became Will's half birthday. But last year it became the start of a life changing diagnosis: Epilepsy.
May 18th. The day that had lived infamously in my mind over the past year. Will had 3 seizures that day. One at our new home. Two more later that evening at Vanderbilt. The next day was filled with unanswered questions an MRI an EEG and a very exhausted family. I had thought a lot about that day over the past year, and hoped to never have one like it again.
May 10th started out regular enough. Breakfast. Playing. Exercising. Holly had called and we had a good short chat. Around 10:30 I was in the living room with the boys who were being very silly and causing a mess with the water in their sippy cups. I had sat down on the couch and just worked out a babysitter for that Friday night when Will started gagging. He was on the couch by me so I tried to sit him up, but in just a few seconds we were in the middle of a full blown tonic clonic seizure. This wasn't the first one since May 18th 2010. Will had had one March 26th. Patrick had been home though. It was on a Saturday morning. We had had to administer the rescue medicine. That one had lasted about 5 minutes. As I tried to remain calm and quickly noted the time on my watch I prayed and prayed it would end and I wouldn't have to give the medicine. The time quickly or slowly? came when it was necessary to administer the medicine. My hands were shaking so badly it probably took me 30 seconds too long. But once it was given I noted the time on my watch again. Waiting. Praying. Waiting. Praying. It's not ending. Why isn't it ending?! Administer second dose. Call 911. Call Patrick. Call Mom. Ambulance arrives. Jack is terrified of the EMT carrying Will out the door. We buckle up in the ambulance and ride over. We are there for about 3-4 hours then finally released with instructions to increase Will's daily doses of anti convulsants. Two Happy Meals and chocolate shakes later, thanks to Nonna, things seem to be improving.
Patrick worked from home on Wednesday, and Thursday me and the boys ventured out. A trip to the library, then to target. Everything seems "normal" again.
Friday morning I'm awakened to another seizure. It lasts longer than 5 minutes and we must administer the rescue meds. Thankfully the meds work this time and the seizure soon ends. The rest of the weekend passes peacefully but Will starts having moments where he yells out and loses muscle tone in his body and falls to his knees a lot.
In addition to the medication Keppra, the next week we started trileptal and seizures increased in a BIG way. We then moved on to topamax, and depakote The potential side effects of the last 2 were enough to keep me praying near constant. We now are unfortunately familiar with a wide range of different seizure types: Tonic Clonic - the violent shaking seizures, Myoclonic- Neck loosing muscle tone or jerking of arms or hands/fingers, Atonic or "drop" seizures - Losing all muscle tone in the body and instantly dropping to the floor (These are responsible for more busted lips than I can count, bruises all over his face/body, and a chipped tooth), and Absence -staring spells.
Over the next 5 weeks things only intensify to the point where Will stops talking to us, and days go by without him smiling. Naturally his anxiety is through the roof and he wants to be held 80% of the day and needs someone sleeping with him through the night and during naps or he won't sleep. And if you didn't know sleep deprivation = more seizures. Patrick and I are functioning in survival mode. The constant worry with Will about trying to protect him and find something that will help tame the 100-200 seizures a day consumes nearly every thought, prayer, and action. Yes, for the past 2 years now, I hate the month of May.
May 18th. The day that had lived infamously in my mind over the past year. Will had 3 seizures that day. One at our new home. Two more later that evening at Vanderbilt. The next day was filled with unanswered questions an MRI an EEG and a very exhausted family. I had thought a lot about that day over the past year, and hoped to never have one like it again.
May 10th started out regular enough. Breakfast. Playing. Exercising. Holly had called and we had a good short chat. Around 10:30 I was in the living room with the boys who were being very silly and causing a mess with the water in their sippy cups. I had sat down on the couch and just worked out a babysitter for that Friday night when Will started gagging. He was on the couch by me so I tried to sit him up, but in just a few seconds we were in the middle of a full blown tonic clonic seizure. This wasn't the first one since May 18th 2010. Will had had one March 26th. Patrick had been home though. It was on a Saturday morning. We had had to administer the rescue medicine. That one had lasted about 5 minutes. As I tried to remain calm and quickly noted the time on my watch I prayed and prayed it would end and I wouldn't have to give the medicine. The time quickly or slowly? came when it was necessary to administer the medicine. My hands were shaking so badly it probably took me 30 seconds too long. But once it was given I noted the time on my watch again. Waiting. Praying. Waiting. Praying. It's not ending. Why isn't it ending?! Administer second dose. Call 911. Call Patrick. Call Mom. Ambulance arrives. Jack is terrified of the EMT carrying Will out the door. We buckle up in the ambulance and ride over. We are there for about 3-4 hours then finally released with instructions to increase Will's daily doses of anti convulsants. Two Happy Meals and chocolate shakes later, thanks to Nonna, things seem to be improving.
Patrick worked from home on Wednesday, and Thursday me and the boys ventured out. A trip to the library, then to target. Everything seems "normal" again.
Friday morning I'm awakened to another seizure. It lasts longer than 5 minutes and we must administer the rescue meds. Thankfully the meds work this time and the seizure soon ends. The rest of the weekend passes peacefully but Will starts having moments where he yells out and loses muscle tone in his body and falls to his knees a lot.
In addition to the medication Keppra, the next week we started trileptal and seizures increased in a BIG way. We then moved on to topamax, and depakote The potential side effects of the last 2 were enough to keep me praying near constant. We now are unfortunately familiar with a wide range of different seizure types: Tonic Clonic - the violent shaking seizures, Myoclonic- Neck loosing muscle tone or jerking of arms or hands/fingers, Atonic or "drop" seizures - Losing all muscle tone in the body and instantly dropping to the floor (These are responsible for more busted lips than I can count, bruises all over his face/body, and a chipped tooth), and Absence -staring spells.
Over the next 5 weeks things only intensify to the point where Will stops talking to us, and days go by without him smiling. Naturally his anxiety is through the roof and he wants to be held 80% of the day and needs someone sleeping with him through the night and during naps or he won't sleep. And if you didn't know sleep deprivation = more seizures. Patrick and I are functioning in survival mode. The constant worry with Will about trying to protect him and find something that will help tame the 100-200 seizures a day consumes nearly every thought, prayer, and action. Yes, for the past 2 years now, I hate the month of May.
Friday, May 20, 2011
I know I'm such a whiner. But I feel so low today. Not 100% sure why. The past few days have been relatively normal compared to the last week on a whole. I just feel discouraged. There is a "prophecy" that some believe that the rapture is tomorrow. While I don't believe in the rapture, I'm all for the end of the world...I think. Sound a little depressing? Yeah, it's been a tough week with little to no answers.
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