Archive for April, 2007

The part of the roller coaster ride I hate…

April 30, 2007 | Updates

The roller coaster we ride these days is a little different than those at amusement parks. On our coaster, we claw our way up every little inch and each one seems to take all the effort we can muster and a lot of time. And then there are days when, without warning, we slip and despite all our efforts to forget or at least ignore the deep valleys we’ve pulled ourselves up out of, the memories come flooding back in an instant. It almost seems that the farther up the hill we climb, the scarier sliding backwards is. It’s like a part of you just cannot stand the thought of going back to the places you’ve been before. Those are the moments you just have to hold on and understand that you are not in control and remember that God knows what He is doing even if you have no idea what He could be thinking. So, I guess what I’m trying to say is, if you ever pass by me on the side of the road and I’m crying my eyes out, you can rest assured that although I’m having a bit of a rough time on the ride at the moment, I am well aware that I am strapped in tight and I will be OK – eventually :).

This past Wednesday when I went to get Samuel out of bed for school, he was obviously not feeling well. He was wide-awake, but didn’t greet me with my morning grin. In fact, I couldn’t get him to smile. He could barely keep his eyes open and was not his wiggly self. I knew he hadn’t been sleeping well lately, so I let him go back to sleep. It is hard for me to know how much he sleeps because when he does wake at night, he is usually just very quiet and will lay in his bed until he falls back to sleep. I know this because there are nights when I have checked on him and found him awake and then come back a few hours later and found him still awake. Yet, he does not make any noise to let me know he is up, so I normally do not know.

Around 11 am, I pulled him out of bed to head to Salt Lake for our rehab appointment. He seemed much better at that point. I put him in the car and ran back in the house to get Nathan. When I returned to the car a few minutes later, something was wrong. Samuel was screaming, and he never screams. I tried to calm him down, but could not. I finally took him out of his car seat and walked around the yard until he was calm. As soon as I put him back in his seat, he started screaming again. I had NO IDEA what was wrong. He was completely inconsolable. I decided that it would be best to start driving and maybe the motion of the car would calm him. It didn’t. After about 15 minutes, I pulled the car to the side of the road and got him out. As I held him this time, I knew what was wrong. He was having myoclonus.

Myoclonus is a type of seizure. It is the startle that happens sometimes as you are falling asleep. Only imagine that you have a startle like that every 3-5 seconds and it causes your entire body to jump and all your muscles to contract and, in Samuel’s case, your right arm to fly up in the air and half the time hit you in the face, and you have no idea what is going on. That is what was happening to Samuel. I held him for a long time, but could not comfort him. I had not seen him like this for nearly 18 months and it freaked me out. It reminded me of being in the hospital just a month after his accident and how miserable he was. Some poor little man in his tractor drove by and stopped to make sure I was OK. I assured him I was, but I must have been a site with Samuel screaming and the tears streaming down my face. It was the part of the roller coaster ride I hate.

I finally gave Samuel a dose of tranxene in hopes of getting him to sleep. He cried and had myoclonus for another hour before he finally gave in. We continued to Salt Lake mostly because I hoped they could help me figure out what was going on. Needless to say, we were very late at that point. Samuel slept for the next 5 hours except for a few minutes in the doctor’s office. So, we didn’t accomplish much with the rehab doctor like I had hoped. She was able to assess his range of motion really well with him being so deeply asleep and she and I had a good chat about possible new seizure meds. The one good thing that did happen is we had to wait about 90 minutes for the doctor to fit us in because we were late and since Samuel was sound asleep, Nathan and I got to sit together and play just one on one. That is a rare occurrence and was fun to do. I kept Samuel medicated for most the rest of the evening and night, so he got a lot of sleep. I wonder if that was what brought the seizures on – lack of sleep. It also could have been the changes I had made to his diet. I don’t know that I will ever know. Sometimes it is very frustrating to have to guess.

I then spent the next 2 days calling my neurologist trying to get a prescription for the seizure med my rehab doctor had suggested. Amazingly enough, he never called me back. (Please read that last sentence with severe sarcasm!) I contacted the on call neurologist over the weekend, but he didn’t feel comfortable prescribing the medication without knowing Samuel. My rehab doctor didn’t feel qualified to prescribe it. My pediatrician didn’t feel comfortable prescribing it. I tried to get an appointment with a new neurologist this morning and their earliest appointment was July 10th. I figured my last option was to drive us down to Primary’s and check ourselves into the ER. Tom, however, decided he would rather lay into the secretary in the neurologist’s office. So, after letting her “have it” in lieu of our wonderful neurologist (sarcasm again) – who refuses to return phone calls – we finally got a return call (2 hours later). Needless to say, I kept the July 10th appointment with the new doctor, as we are COMPLETELY finished with our current neurologist!

So, we have a new medication – neurontin – to try and control Samuel’s seizures. I hope it works. Samuel didn’t attend school on Thursday because I didn’t dare send him. He had a fairly good weekend, but I slept in his room last night after he had one of the rare seizures I’ve seen him have just a few times where his entire face and upper body twitch. He had about 8 of his other seizures between 6 and 10 this morning. I didn’t send him to school again today. So, something needs to be done. This medication we’ve chosen has very few side effects, but is also not as effective as other meds with more side effects. I really hope it works so we don’t have to go to something that will be harder on him.

On the positive side, Samuel has been easier to make laugh the past few days. I think he is getting more ticklish. Good for me, not so good for him – hee, hee! Pray hard that this seizure med works with few side effects so we can get back to our happy little man!

Love,
The Jewkes

April 23, 2007

April 23, 2007 | Updates

Well, Tom and I returned last night from a weekend away. It was nice! My dad, step mom and sister spent the weekend with all the kids while we went away. We didn’t go too far :). Just to the anniversary inn in Logan one night and then up Logan Canyon to the Beaver Creek Lodge the other. We got to do a little snowmobiling and a little shopping (for kids’ clothes at a clearance sale). We went out to eat a few times and watched movies and stayed up late and slept in late. It was VERY relaxing! The kids had a fun time, too, and they were WELL taken care of. They even ALL made it to soccer games at 9 am on Saturday - including Samuel and Nathan. And they all got to go out to eat and watch movies and play games. They certainly didn’t seem any worse for the wear when we got home. Thanks Nana & Papa & Kaylee!

Samuel had a pretty good week. The tranxene isn’t working as well as I had hoped in keeping his seizures in check. He is doing better as far as seizures go, but it would be nice to be rid of them all around. We’re working on a new diet that will have more fat and less carbohydrates in it, and that may help his seizures. So, we will try that first and if it doesn’t work, we will go from there. Hopefully, it will.

We also have an appointment with our rehab doctor this next week, so we’ll get to discuss all that good stuff with her. Samuel had a great back adjustment this week at the chiropractor and we even tried out a little cranial sacral therapy this week. But Samuel was pretty, well REALLY, wiggly, so we will have to try and arrange that therapy at times when he is normally asleep.

Otherwise, not too much going on. I did let my 15 year old drive my new Suburban today about 4 blocks total. He got his driver’s permit a few days ago. That was stressful! I’m not quite sure how I’ll make it through 40 hours of his driving so he can get his license?! It’s a little (LOT) scary to let one of your kids behind the wheel!

This week, we’ll start Samuel on his new diet. There are 3 other near drowned children that I know of on this diet and their mothers say it has been great for them. So, we are hoping it will be a good thing for Samuel. He has been throwing up bile from his liver lately and that concerns me. He has done that before and no doctor seems to know what could be causing it. I simply think his liver is sick of all the crap that has been put through it and I’m hoping this diet will clean it up.

Well, that’s about it for now. I’ll post again next week. Keep praying!

Love,
The Jewkes

April 18, 2007

April 18, 2007 | Updates

Sorry this update is late. This week did prove to be a little crazy and Monday and Tuesday have been catch up days.

Samuel’s neurologist didn’t get back to me until Tuesday. On Monday, I called in the morning and let the secretary know how absolutely ridiculous it was that I still hadn’t heard back from him. She promised me she would get ahold of him. At 4 pm, I called back and told them I knew they closed at 4:30 and I needed to reach him. The same lady said, “I guess I should make this a high priority then?” Man, oh, man and a bleepity, bleep, bleep! If I could have reached through the phone!!! Boy, oh, boy!

So, Tuesday morning, I got back on the phone and this time got the nurse to speak to me. Well, after hearing my plight, she paged our doctor and he got right back to me. He suggested that we put Samuel on topomax. We went through all the hows and whys and then he started listing side effects - red eyes and the inability to sweat. That concerned me a bit, but I figured we could try it. But I did a little more research and other side effects are things like delays in motor control, difficulty concentrating, the feeling of pins and needles in the arms and legs, difficulty finding the right words, weight loss, anxiety, metallic taste in mouth, upper respiratory tract infections, eye abnormalities, and the inability to sweat. Whoa! How can I give that to a kid that can’t communicate with me? What if his hands and feet feel like pins and needles? He can’t tell me. And I am NOT about to mess with his eyes!

In the meantime, I had emailed our rehab doctor (Monday night) and by Tuesday afternoon, she had replied. She suggested we start him back on a 1/4 tablet of tranxene every 6 hours. So, after a lot of thought, that’s what we decided to do. It seemed to be helping quite a bit, but today was a worse day again. The weather seems to affect him and the storm moving in today may have caused the increase in seizures. Anyway, that’s where we are on that problem for now. Hopefully, we can come up with a better solution. But I wasn’t convinced that topamax was the best idea.

I also got the added joy this week of taking Nathan to the instacare one night this week at about 10 pm. He had ulcers on the inside of his throat. I had noticed he hadn’t been eating well for about 10 days, but I assumed it was a stage. Then one night, he just refused to take anything, including his bottle. And I realized something was wrong. So, they gave me stuff to rub on the inside of his throat with a q-tip. Yea, right! I couldn’t get him mouth open far enough to even see his throat. So I gave him sore throat spray and it went away in a few days and now he is a happy little food gobblin again.

But I mention this here to make a quick point. I was thinking to myself that night that the doctor we had that night must be the worst ER doctor ever - rude and totally insensitive. In fact, dealing with him and pacing in that hospital room surrounded by all the machines and hospital smells for an hour nearly caused me to have a panic attack. But the more I thought about it, the more I realized that I have about 3 ER experiences with doctors that ranked right up there with this one. How these people get these jobs, I will never know. I wish someone would explain to them that when people end up seeing them, it is as a last resort and they are our only hope for an answer. So treating us like crap really is not OK.

I also realized how incredibly blessed we were to have the ER doctor and staff we did the night of Samuel’s accident in the Logan Regional Hospital. They were so good and kind to us. And that doctor called me every few weeks the entire time we were at Primary Children’s to check on Samuel and see how he was doing. I will always be grateful to him and his genuine concern for us. There are a lot of good doctors out there. I just wish the bad ones could realize just how big of an effect they have on the patients they treat and how much we need them to help us. Well, enough of my soap box… We didn’t get much therapy in this week. Seemed like something came up around each appointment and we had to miss them. I did attend a seminar in Salt Lake and I attended it to learn some new things to try with Samuel. There is much, too much, for me to try and explain here. But I’ll give you bits and pieces over the next few weeks as we try these new things with Samuel. Hopefully, we will see some improvements from them. So, that’s about it for this week. We are excited for the spring weather! It will be nice to be outside often. And we have lots to do to keep us busy this next week. Keep praying…as always…I KNOW it has an effect…a good one! I had a doctor tell me this week that each cell in our body has the capability to communicate to the ends of the universe. (Yes, a doctor told me that. A good one!) That means that when you pray for Samuel, he can feel it. And I know he can!

Thanks again to everyone!

Love,
The Jewkes

April 8, 2007

April 8, 2007 | Updates

This week was a crazy one. We had to let a secretary at work go and I had to train the new one. So I spent every afternoon and evening this week out at the office. That meant that I didn’t get to see Samuel much at all. So most of what I tell you about this week will be from reports from my sister each day. First, I STILL have not heard back from his neurologist. I have certainly passed frustrated and now am pretty upset about it. Samuel is still having too many seizures and now they are making him nauseous again. And I have left messages at least 10 times over the last 10 days for that doctor. So, tomorrow, his office will get a call from me indicating that this is entirely unacceptable and if he can’t help me I will find a neurologist that will. I understand that doctors are busy and that things come up. But waiting 10 days for a phone call for a medication to stop seizures is absolutely wrong and if nothing else, this doctor needs to know that. And on top of that, we have worked too hard over the last few months to get Samuel’s weight at an acceptable level to be OK with watching him throw up everyday because his seizures are making him sick. It is also a big burden on everyone to be bathing him over and over again and washing tons and tons of laundry and bed sheets. He even threw up on he and I today during sacrament meeting and he hadn’t been fed more than 60 cc’s in the 2 hours before church. So, I’ve reached my breaking point on this one and will take care of it tomorrow no matter what.

From reports from my sister Kaylee, Samuel was able to spend a lot of time outside this week and seemed to love it. He loves to swing on the swings and smiles and laughs about it. He also enjoys us holding him up while he takes steps across the lawn. And he loved watching the kids fly kites one day this week. I am excited for the warm weather and think it will be a very good thing for all of us!

Samuel has been struggling a bit with his sleep schedule again, but I am pretty sure it is being caused by his seizures also, so that should adjust back to normal when we get the seizures under control. Sometimes I check on him late into the night or in the early morning hours and he is wide awake and when I come back a few hours later, he is still awake. I often put movies in for him in the middle of the night because it must be so frustrating for him to lay there wide awake and alone. But after one of those nights, he always struggles to make it through the next day because he is so tired. So, I’m hoping we’re back on track soon.

He is still SO CLOSE to crawling. He is also getting better at supporting himself in a quadraped position (on all fours). And his head control amazes me compared to what it was just months ago. But my favorite thing is sometimes when I pick him up, he will wrap his arms and legs around me and lay his head on my shoulder and I can carry him just like I did before the accident. It doesn’t happen often, but that feeling of “normal” is always a wonderful thing!

Well, that’s about it. Easter was fun and Samuel got Finding Nemo and Happy Feet. But even with his new movies, he’s up there watching Cars tonight because that’s the one he chose. He’s so funny because he has to watch a movie a bunch of times before it becomes part of his “acceptable library” of things to watch. So I make him watch new ones so he can get used to them in order to keep sanity for the rest of us!

This week promises to be another hectic one. I have a seminar in Salt Lake this week and Samuel has a bunch of therapy and school. We see his rehab doctor next week to discuss options for his tone and his feeding tube. Hopefully some good things will come of that. And, maybe, I’ll get the website up this week. It is nearly done and it looks great!

Thanks for all your prayers!

Love,
The Jewkes

April 1, 2007

April 1, 2007 | Updates

Wow, this week went fast. Tuesday morning, I woke to take Samuel to school and he had thrown up in his bed, so we really had to hustle to get him bathed and out to school in time for their field trip to the fire station. It seemed that he had a good time on the trip and he seemed very proud of the red fire helmet he came home with that afternoon. Wednesday morning turned off suddenly cold. There was an obvious storm moving in quickly and when I went to wake Samuel, he was having a lot of seizures. I got him ready and they seemed to subside, so I took him to school. About an hour and a half in o school, his teacher called me. She said he had been having a lot of seizures and was very pale and obviously tired. So I went and picked him up. I brought him home and tried to get him to sleep, but he seemed to be feeling better so I let him watch TV. We later went to the chiropractor and then he did therapy with Kaylee and did really well. Thursday, Samuel continued to have more seizures than usual and by Friday, I put a call into his neurologist so we could try a new medication to control them. He didn’t call me back, so I put in another call Friday afternoon. Saturday morning, he gave me a call to ask me when Samuel’s last EEG was. I told him that he had just ordered an EEG for Samuel about 6 weeks ago. He told me he would find that report and call me back. So far, he hasn’t. Frustrating! We had guests all weekend - some old friends from high school and their kids. Samuel tolerated all the extra noise really well and seemed to enjoy having everyone around. He spent a little time today in the power wheelchair we have on loan to us. I put his tumble form blue chair in it and he is more comfortable now than in the old seat, so we will try again to see if we can teach him to use it. I think he will at least be able to get the idea that hitting the switch moves the chair - even if he can’t control where it is going.

Otherwise, Samuel is just really moving all the time. His legs are tighter as is his stomach. I am worrying everyday about whether or not we have hit the limit of reduction on his baclofen. It wouldn’t matter so much to me except for the fact that we can’t get rid of his feeding tube as long as we have the baclofen pump unless he learns to eat on his own and I don’t forsee that in the near future. And he and I are both VERY sick of the feeding tube. He fights me tooth and nail everytime I touch it and I KNOW it is affecting his aversion to us touching his mouth or face. Again, frustrating.

We weren’t able to make our appointment to reduce his pump this week due to some last minute problems with our business, so that will have to be rescheduled. I’m not sure when I will reschedule it for. They are pretty booked next week, so we may just keep the appointment we have the week after.

Well, that’s about it for now. I think I’m in a bit of a downer mood tonight and this wasn’t the best time to post. Sometimes, the ups and downs and inbetweens just wear on us all a bit. Samuel is doing so well, but it is so slow and it’s hard to be patient. And then setbacks like seizures and increased tone and not much progress on the eating front feel a bit overwhelming. But then again, weekends are always a little bit hard because there isn’t as much to keep Samuel busy and he gets bored and agitated and it affects me also. I seem to only have good days when he does. I guess that’s probably natural.

So, here’s to a great week ahead. Tomorrow’s another day and hopefully, if nothing else, the weather will be nicer this week :)! Keep praying. We know when you do. It’s helps us a ton!

Love,
The Jewkes