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!

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.

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.

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.

Monday, August 15, 2011

We Have Arrived Le Bonheur Day 1

We arrived bright and early at the hospital at 5:30 am. After being admitted, Karen, Dr. Wheless' nurse brought us to our room in the Epilepsy Monitoring Unit (EMU). She spoke with us for a few minutes about what was on the agenda for the day. Then the nurses started arriving each asking me the same 20+ questions. While we waited for the MRI, Will played in the playroom that is specifically for the EMU children.

When it was time to head down to Radiology the nurse began pulling Will down in a radio flyer wagon. True to his character,  he decided he preferred Daddy holding him. At Le Bonheur they have a program called "Child Life." Their job is to basically help the children cope with what is going on. When Will was about to get his IV a lady came in and started distracting him with books, toys, and bubbles. This helped in a HUGE way. Will let us know he didn't like it, but he didn't freak out like normal. We love Child Life. Will of course chose for Daddy to be the one to take him in to the room where the MRI machine is. Patrick said he didn't cry or act scared just asked for his blanket and was asleep. Patrick and I then went to the cafeteria to eat breakfast which means we technically had a date. :) Sad. I know.

After Will's MRI we met Dr. Wheless. He is chief of pediatric nuerology here and has been the same at St. Jude. He asked for a very detailed history of Will's seizures. He thought we should go off the one medicine will has been on since the onset of his epilepsy last May, keppra and the B6 supplement we started a month or so ago. He would keep Will on the zonegran for now. Following this shake-up he added and "No more diet. Don't go crazy on the carbs. Just get him some chocolate milk." Will loves this guy. Not only has he raised the red flag on chocolate milk he wears cowboy boots and has a beard. This in Will's book means you are the coolest. We really like him too.
"Dump Truck"

After Will had his breakfast and finally released the death clutch on the empty carton of chocolate milk, he had about 30 electrodes hooked up to his head. This took 35-45 minutes. Will didn't care for this but was a good sport for the most part. They ran a few tests with him trying to induce seizures, and then he was free to go back to the playroom. Patrick and I were given instructions that every time Will had a seizure we were to press a button. So we did. Probably 100 times or more that day. By that evening we were told to only press the button for myoclonic/atonic seizures or "drops" and tonic clonic (gran mal).

At some point during the afternoon the Dr. came back by to let us know Will's MRI looked great, but he has 5 sinus diseases. WHAT?! Apparently that just means infection. Disease is a bit of a strong word. And scary. Dr. W. said, "No big deal. That's a lot easier to fix than the brain." We started an antibiotic soon after that.

Will's seizures seemed to increase throughout the day. That didn't change his overall pleasant mood and willingness to do what was asked of him. It was a very long day, but we are so grateful to be here. We need their help.

Saturday, August 13, 2011

More Prayers for Will

On Thursday, August 11, I sent this email to family and some close friends.

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.


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.

Monday, August 8, 2011

Sunday morning really seemed to be a promising day. Will had seemed to rest well and was running around and playing with Jack. Sometime during Sharing Time Gospel Instruction something changed. It was pretty much downhill from there.

I was very tired myself after church so I laid down to take a nap with Will. When he and I woke up he didn't say much but smiled some. He spent the rest of the evening playing with Thomas the Train and his train set. We could see the seizures increasing. Mostly myoclonic. His hands jerked and occasionally a whole arm, head or leg would move. By the time bedtime came around it was close to constant jerking. I read him a book and he immediately teared up at the thought of being left alone. I told him I'd stay with him till he fell asleep. I held his hand and was shocked by how many jerks I felt...2 hours and hundreds of jerks later, Will finally fell asleep.

"I need Daddy to give me a blessing." Huh? "I need Daddy to give me a blessing!" Oh. Ok. I quickly hopped up to get Patrick who had fallen asleep on the couch. It was a little after midnight. Patrick quickly got up and gave Will a blessing. I only half heard what he said as my mind was reeling over the fact that my 3 1/2 year old was demonstrating a form of faith. Faith in the Lord? Or in his dad? I'm not sure. Maybe both. After the blessing was over, Will asked Patrick to sleep with us. A queen size bed is most definitely not big enough for 3. Somehow though we all managed to sleep.

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!!