This morning we had our traditional sugar binge, I mean, cookie decorating event. When the boys finished, I remembered that we had pictures of the same activity from way back in 2002. Do you think their food art skill have progressed any since then?
Nine degrees outside Stomachs hurt so we throw up We race anyway
So a couple of months ago, I talked Henry and Connor into running a 5k race with me on Thanksgiving. I only had to bribe them with a trip to the restaurant of their choice after they finish. I had them follow the "Couch to 5k" plan, where they gradually increase their jogging time from just a few minutes, to 30 minutes straight. They did a good job with their training, and kept their complaining to a minimum.
Thanksgiving morning arrives, and it is a whopping 9 degrees outside. In addition to the cold weather, Connor has had a stomach ache since the night before. Since he hasn't thrown up (yet) we bundle up and head off to complete out mission. We arrive for the race. Connor thinks, "I feel like I'm going to puke." Henry thinks, "Wait, my twin brother is going to throw up? I think I will, too" So we warm up for the race by emptying our stomachs.
Finally, after standing around if the cold, its time to start. Our goal was to jog the whole way. It was a hard fight, but Henry and Connor performed admirably and did indeed jog the whole way, stomach aches and all. Since the race course was in the shape of a figure 8, I offered to let them quit half way through, but they decided to finish. I'm very proud of all the hard work they have done to prepare for this race. It's too bad that the conditions were less than ideal, but I think that added to their sense of accomplishment. Well done boys!
So today at the periodontist, the assistant asked my for my birthday. Without thinking, I immediately replied, "8-14-98", which is . . . Ben's birthday. It makes me think I've spent way too much time talking with medical personnel about Ben lately.
So, after missing five weeks of school, I decided that yesterday was the day that Ben needed to return to jr. high. I could tell that he was nervous about going back, and he isn't 100% physically better, but I figured that at this point, the benefits of staying home were not as great as the risk that school would become more and more dreaded, and scarier than in needed to be. Sometimes its just best to take a deep breath and go out and slay your dragons.
Ben returned home from school in good spirits. He said that the yelling kids made his head hurt. (I'm with you on that, buddy!). He felt a little stupid because he didn't know where to sit in any of his classes. Reportedly, "about a million" people asked him about his scar. He told them, "I had surgery, and it hurt a lot." All in all, I was pleased with how he seemed to be dealing with his first day back.
The picture shows Ben's new haircut, and how he isn't attempting to hide his scar. You can also see that all of the stitches have now come out.
Thanks to Henry and Connor for smoothing the way back for their brother. It's good to have a support system in place. Another thanks to Ben's in-home tutor from the school district. She always brought him candy, and loves the Indianapolis Colts just as much as Ben. If it were up to him, Ben would have worked with her all semester. Also, thanks to the staff at Willow Creek. Everyone had been very understanding. I'm impressed that Principal Browning came up to the hospital to visit Ben, and knew who he was talked with him last week when we had to drop something off at the school for his brother. It's good to know that he is not forgotten in such a large school.
Edited to add: Ok, so yesterday was an "B" day, and today was a "A" day meaning Ben went to totally different classes today. Since his surgery he has been really sensitive to loud, shrill noises. Apparently, the foreign language teacher Ben had today likes to BLOW HIS WHISTLE in class! What? Ben was pretty upset about that. I'll have to think about the best way to handle this . . .
Today marks the third week since Ben's surgery, and three weeks with no seizures. This is especially promising because last week he was sick and coughing a lot. Normally, he is way more apt to have a seizure when he is sick.
As you can see, his scar is healing nicely, and his hair is already growing back in. One side effect that he has noticed is the skin inside the "C" shape of his scar is numb. He says that is often itches, but he can't feel the scratching. The Dr. said that this is totally normal. And now we all know that we can repeatedly pinch Ben on his scalp.
Ben is slowly continuing to get back to normal activity. He went to the Lehi Mascot Bowl football game on Monday with his brothers, and had a good time. I even saw him do a little slow jog to catch up with them when he got out of the car. He said the event made his head hurt, "but it was worth it." I'm sure he meant, "It was worth it to get away from you, mom, for a few hours."
I'm thinking that I will send him back to school on October 3rd. I'm a little worried that orchestra might make his head really hurt, because, who wouldn't get a headache in beginning orchestra? We'll have to see how that goes.
Thank you for all your continued thoughts and prayers. We are overwhelmed with all the support that we've received.
Example 1: We make Ben go for walks outside every day. He doesn't like them. I'll generally say something like, "We need to go for a walk before lunch" and he'll reply with, "Let's just go now and get it over with."
Example 2: The school sends a tutor to the house on Tuesdays and Thursdays to help Ben do a little school work. Yesterday she left Ben with two pages of math to finish by the next Tuesday. After she left, right away Ben starts working on his assignment. If you've read my next post, you'll know that Ben felt worse than normal yesterday. I told him, "You know, you have a whole week to finish this, right?" He replied, "Yeah, but I just want to get it all done now." And so he did, coughing all the while.
It's hard to tell if your kid is sick, when he already feels like crap.
So, Ben has been coughing a bit ever since he got out of surgery. And ever since we've came home, if you ask him how he's feeling, he'll reply with, "I don't know" or "Not that good." On Monday, he started coughing more, which turned into even more coughing on Tuesday. He also said that his head hurt, but when hasn't it hurt? Tuesday he was saying he felt, "Not that good" and in the afternoon I noticed his temperature went up a little, to around 100 degrees. Of course, this was around 5 o'clock, when the regular pediatrician and surgeon have gone home. When Scott got home, Ben said he felt, "sick" which is worse than "not that good." Scott insisted that I take Ben in to see the pediatrician on call, instead of waiting till the morning. (Good job dad!) The Dr. said Ben had a little bronchitis or pneumonia going on in his left lung, and gave us two antibiotics to take.
Skip to this afternoon. Ben's coughing has noticeably lessened. He says he feels, "Not that good" but he is feeling good enough to 1) tease his sister and 2) eat more than he has for probably two weeks.
Today is one week from Ben's last surgery, and he has been home for almost 3 days. I think he is slowly getting better. If you ask him, he says his pain stays at the same level most of the time, but I've noticed that he is a lot more active in the afternoon and evening than the morning. He even offered to help me clean up after dinner last night! His pain seems to be at its worst when he wakes up in the morning. I've hesitated to wake him in the middle of the night to give him pain medicine, but maybe we'll try that for a while.
He was excited to watch the NFL opener last night, and the BYU football game on Saturday, so that is a good sign. Also, he doesn't seem embarrassed to show people his scar. Hopefully that will continue when he goes back to school.
Yesterday he got to wash his hair for the first time since AUGUST 31ST! Good thing he keeps it so short normally. I have noticed that he is itching his head a lot less since then.
On Wednesday, Charlotte said to me, "When will Ben start eating a lot, and teasing me? It's too quiet now!" So we are still waiting for the return of teasing, which is the true sign of recovery.
Here's some good news to go with our pirate picture. Ben will be heading home this afternoon. He so excited by this news that he's taking a nap.
He still has a pretty good headache, and is wore out, but the surgeon (Dr. Kestle) and I and Ben all think we can go home now. He is having a little double vision, hence the eye patch, which is totally normal. His brain is still swollen and pushing on some optic nerves. It's not too bad, and Ben only wears the eye patch when I make him.
Another (pineapple) tid-bit I thought I'd pass along is that Dr. Kestle told us that if Ben has any seizures in the next 3-4 weeks, they "don't count." I guess brain surgery for any reason leaves you more susceptible to seizures until the brain heals. (He has not had any seizures since surgery.)
The neuro-psychologist also stopped by and ran some memory test, which showed Ben's memory is about where it was before the surgery. He also recommended a 2-3 week break from school, and said that not rushing back to school would be best in the long run. Dang! I thought I was going to send him out on the school bus tomorrow at 8 am!
The nurse practitioner just stopped by and mentioned that Dr. Kestle rearranged his schedule on Friday to fit Ben's surgery in. If they had not done it that day, I'd imagine it wouldn't have happened till today, since it was a three day weekend. So, thank-you Dr. Kestle! Again, thank you for all of your thoughts, prayers, meals, candy, balloons and diet coke. You're all awesome!
Today went a lot better than yesterday. Ben had a lot less pain, talked a lot more, and was able to walk around a little bit. After living on a liquid diet since Tuesday, he surprised me this morning when he said, "I feel like ordering some lunch." And his first real meal? He ordered fried fish. Not what I would have picked, but I was happy to see he had some sort of appetite. He still is not eating very much, but a few bites of solid food is better than none.
Ben wants me to report of how many IV's he's had to have. The last one in his arm has just gone bad, so we are waiting for them to put in his 6th IV. Poor Ben.
I think we might get to go home on Tuesday. Hurray!
Ben came through the surgery with flying colors. The surgeon was very happy with the results. He said there were no surprises. They piece of his brain that they removed was about 1.5 inches long and about as big around as the surgeon's pinkie. That doesn't seem too bad to me. One thing that surprised me is that they did not put a bandage over the incision. Ben will have a pretty awesome scar! The picture is a little gruesome, so scroll down if you want to see.
It's coming up . . .
Still coming . . .
Almost there . . .
Alright? Is everybody with me again? We'll be in the PICU again for tonight, and then off to the regular Neuro/Trauma floor tomorrow.
So after some final testing this morning, our Dr's put together a final plan to remove the part of Ben's brain that causes his seizures. We left Ben at the O.R. about an hour ago, and are anticipating a 4-5 hour surgery. I'm reassured by the surgeon, who before both surgeries said to us, "We'll take our time." This is especially nice to hear when your son's surgery starts on a Friday afternoon before a 3 day weekend. I'm feeling pretty calm and confident right now. The surgeon said that the chances of something catastrophic happening in surgery are less than while driving in a car. He also said that the recovery from this surgery is usually easier than for the first one.
Thanks again for all you thoughts and prayers.
Below is a post I wrote late last night. I'm not nearly so worried right now, but I thought I'd post it anyway.
How did we get here? How did we get to the place where I can give my son over to the Dr's and say, "Here, take a piece out of his brain." How do you sign up your oldest son for something that, at least in the short term, will cause a lot of pain and suffering? How do you undertake such a big ordeal on behalf of one child, knowing that it will cause jealosy and hardships for the other children? How do you make these decisions?
I know the answer has partly to do with time. Ben has had seizure for a long time, and the neurologist first approached us about the possibility of surgery a long time ago. The answer also has to do with something I've learned in the last 12 years: ignoring something won't make it go away. Believe me, I've tried. But bad things still happen even if I pretend that they don't. When I became a parent I didn't know that making life changing decisions for someone else would be part of the deal. But they have to be made, and inactivity is not one of the options.
I know the answer partly has to do with fasting and prayer. I did not have one big "SURGERY IS THE ANSWER" moment, but there was a gradual feeling of peace, and confidence that this was the best choice. Ben has had a hard time this summer, with even more seizures than normal, and I like to think that one of the reasons why is to keep us heading in this direction, to keep us from chickening out. That Heavenly Father, who know the end from the beginning, wants us to do this.
I have been pretty certain of this decision. Until now, when it is so close to happening. Now its a lot scarier. After a lot of waiting, thinking, testing, and waiting some more, the time is here. It is our best hope for Ben, to have a normal life. I'm a little bit freaked our right now, but here we are just the same. Good luck Benny! We love you.
It looks like Ben's second surgery will be tomorrow at 11 a.m. The Dr's all met with Ben and Scott this afternoon (after I went home for dinner) and said that Ben has had enough seizures that all came from the left hippocampus. This confirms what we thought before the test. They also did about 2 hours of mapping on Ben's brain this evening to test his verbal skills, and will test his memory at 8 a.m. tomorrow. Since the hippocampus deals with memory, the test tomorrow morning will be the deciding factor in whether or not they can safely remove his left hippocampus during surgery. Even if they decided they can't do that, they plan on removing the electrodes tomorrow. So it looks like surgery of one kind or another for tomorrow. It will be good to finish this ordeal sooner than later, but I'll admit I'm a little shell shocked right now. Up until 6 or so this evening, I really thought we'd have 4 more days till the next surgery.
Wednesday at 10 a.m. is Hospital Bingo time here at Primary Children's. This cool motorcycle blanket is Ben's Bingo prize. Apparently, you win a prize if you participate, sleep, or watch re-runs of BYU football games during Hospital Bingo. It is a very nice, soft, two layer blanket. It came with a tag indicating that it was put together by a boy scout troop for an eagle project. I think that is awesome that some teenage boys are putting together blankets for hospital patients! I mean who better would know what kind of blanket a 12 year old boy would like than some boy scouts! Good job Troop 154 and Mr. Eagle Scout whose name I won't mention on the internet!
Other than that, Ben has been slowly improving today. He has not thrown up, but has mainly been sticking to a liquid diet. He still has a lot of head pain, and we are working to get that under control. We have also moved out of the PICU, into a more comfortable room.
The Dr's are most excited that he has had two seizures today. His surgeon told him, "Good Job!" This means that we are getting the test results that we need, and might be getting enough results soon enough to do the second surgery earlier. Don't quote me on that, though. So hurray for seizures?!?!
Ben had a fairly restful night. He had a couple 3 hour blocks of uninterrupted sleep. He has not thrown up since midnight, and has had a few sips of Sprite this morning, but his stomach is still queasy. He is really hoping to get rid of his catheter today, and be able to get up and stretch his legs. He is pretty sleepy from all the morphine that's he's been getting. And he freely admits that he would rather be in school than at the hospital today.
Also, room service just dropped by, so Ben can now order his own clear liquids!
Thank you for all your thoughts and prayers. We truly appreciate it.
Ben's surgery ended just short of 5 hours after we left him. His Dr. said everything went well. Ben is in the Pediatric ICU right now, and he feels pretty crappy. He is very nauseous, and (duh!) his head hurts. Hopefully that will improve tonight. If he is feeling better tomorrow, he can move into a more comfortable room in Neuroscience.
And we can't have our cell phones on in the PICU, so no calls from us tonight.
Ben went into surgery this morning around 11:30. The Dr. says it will take around 5 hours. The picture is of the markings the surgeon made on Ben's head before he went into surgery. You can see the purple marks go from his ear, up and around like a backwards "C". I think the "K" stands for whoever is the most awesome mom at the hospital.
Before the surgery, Ben had a little medicine to make him really relaxed. It also made him a little confused. The nurse asked him when the last time he had anything to eat of drink, and he replied, "Well . . .I had some Sprite at 7. And I had some water at 6:50. And I had some Sprite at 6:40." I was cracking up at his minute by minute replay of his morning.
On Monday Ben will have some blood work done at the hospital in preparation for the surgery. Thankfully for me, Ben has never been afraid of needles. He is a brave guy. Also, on Monday we'll find out what time the surgery will be on Tuesday. The hospital told us that they schedule surgeries from the youngest child to the oldest, so I'm guessing we'll be later rather than earlier.
Monday will also be Ben's last day at school for 4-6 weeks. He will have attended 4 whole days of jr. high. Wow! Just think of all the money we'll save on school lunches!
Here is Ben's surgery schedule. His brain surgery is a two-stage procedure, with the two surgeries tentatively scheduled a week apart.
Tuesday, August 31 - 1st surgery to place electrodes on his brain. This is so the Dr.'s can map his brain, determining specifically where in his brain his memory and language functions are. This mapping will take approximately one week and it will take place in the hospital. After this is done . . .
Tuesday, September 7 - 2nd surgery to remove the abnormal brain tissue (bye-bye left hippocampus!) that has been causing Ben's seizures. The electrodes from the mapping will also be removed. Recovery from this surgery is expected to be 5-7 days in the hospital, and another 2-4 weeks at home.
Epilepsy.com has some pretty easy to understand information on brain mapping and surgery if you want to read more. Click Here
Well, not literally. But I thought a blog might be in order for those wanting to keep up with Ben's upcoming brain surgery. This blog will only be about Ben, and his medical issues. Failure to mention other members of the family on the blog is in no way indicative of the amount of love and attention they receive in our family.