Last Surgery!

Well just when I thought all the excitement was over in our lives, I just realized moments ago that the poopy smell we thought was eeking from Ya Ya's bum, is not coming from her bum, but rather from the little drain hole at the bottom of her cast.

I just put a call into the ortho clinic at Children's and hope to hear something back soon. I just keep thinking that a foot amputation and a poopy smell coming from the site doesn't seem normal. This didn't happen with Jieling!

I am holding it together for now.




Update!! After noticing the foul odor from Ya Ya's cast I was instructed to take her in, and if I hurried I could go to the ortho clinic instead of the ER. I was frantic and quite upset, but not because I thought something was seriously wrong, but because of the fear Ya Ya has for people in the medical profession. I think this fear stems from her toe amputation in China and whatever that entailed?
Anyways, much to my surprise and utter shock, Ya Ya did not flinch, whimper, or protest even one second when they started to cut off her cast! I think she was curious and anxious to have her big pink bandaid removed. I on the other hand was trying not to pass out! I was not ready to see her footless and all the messy smelly mess. All the dressing inside her cast was soaked and yucked up, but NO infection. Thank God. If it were infected they would have had to clean her stump and that would have been pure torture! Oh thank you God. In the end they just ended up cutting off the bottom half of her cast changing all the dressing and she was recasted. She sat still (miracle in itself) and let the professionals do their work. I was and am still amazed, because Ya Ya screamed a lot in the hospital. While still in recovery they had to give her ativan to calm her down because she was trying to pull everything off of her. She cried if a nurse even looked at her. She would put her hand up to them and tell them "No thank you." She threw something at one nurse, and was just not a model patient. Poor baby, I just wanted to get her out of there and safe at home, so her reaction, just 4 days after her surgery is amazing.

Fun TImes

These first two pictures of Ya Ya just make me smile. My baby girl had the BEST time camping ever. She really loved every minute, and I just loved watching her enjoy herself and all her family. We had a good time and really look forward to more trips in the spring.

Mud Baths

I'm horrible about posting updates! Nick is doing great, No seizures since his surgery! The first week home with him was not fun. He had a lot of anxiety, and did not trust us to take proper care of him. Silly kid.

His recovery and attitude has been amazing. He's been going for walks, and can't wait to start lifting weights again. His Dr.'s say it's too early to call this a cure (especially since his chances of this were very low) but we are hopeful. I love this big kid and it's so nice to see him smile again!

The girls and the rest of the kidlets are doing well. We are looking forward to a week at the ocean next week with all the family.

The little girls thought it would be fun to add dirt to their pool today and take a mud bath. The only time I freaked is when I caught Ya Ya drinking the muddy water!

Multiple subpial transection

Not exactly the words we were hoping for, but at least Nick still has options. The mapping this morning showed that Nick's seizure focus is located too near his speech and motor areas so he will not have the resection. His loss of function would be too great if these areas were removed. The mapping was interesting but very exhausting for Nick. I read that some patients actually enjoy some of the sensations they experience during mapping, but this was not the case for Nick. It caused him to be very fearful of a big seizure and he stopped multiple times asking for reasssurance. Once the testing was done he got a nice calming dose of Ativan, and he is still sleeping...12 hours later. Today has been the hardest so far, but the Dr.'s have told us how well Nick is doing. They told us most of their patients don't do as well as Nick.
Tomorrow morning Nick will have surgery to have the grids removed and will have the subpial transection. He won't have any tissue removed, but will have tiny slices made in the area of his seizure focus. I don't have the energy to explain the procedure, but it's easy to google.
I am thankful that at least Nick still has options if this doesn't work. Many epilepsy patients are not candidates for grid surgery, so I still feel blessed, but I'm speaking for myself and not Nick. At least we know where Nick's seizures are so this will never be in question. His Dr.'s feel Nick is a good candidate for the deep brain stimulation (neuro-pace) but we will cross that bridge when we come to it.
Nick has been so amazing through all of this. He is such a brave and awesome young man.

You should see the other guy.

Nick's grid placement went well. He had 146 electrodes placed on the left side of his brain, and started having seizures before even leaving the ICU. He was finishing up a huge seizure right before his grandpa and I arrived which was very upsetting to everyone. Luckily after some heavy drugs things settled down and he then proceed to have a seizure every half hour (not big ones) which kindof freaked his drs out. He could have these grids in for two weeks, but decided to have all his seizures in the first 4 hours of being hooked up. As is the case in all video eegs, you press the button when the seizure starts which alerts the whole floor with a siren, flips the lights on, and everyone comes running. Well doing this every half hour it became pretty comical. By the time they came in his seizures had stopped. His typical seizures are brief, but very frequent. I think he had twenty yesterday. I told them that I could just reset the monitors, but they wouldn't allow it. Anyways, it's now the end of day two and he's back on all of his meds. He felt pretty crappy today and woke up this am with his eye swollen shut. He's getting tired of hearing how all this is normal for brain surgery.

Tomorrow am his surgeon and neurologist and some other guy will come in and start mapping out his brain by stimulating different parts of his brain with small amounts of current. This data will tell them if they can proceed with the resection. This whole surgery boils down to what they find out tomorrow morning. I am prepared to be disappointed. My heart will break for Nick if he's gone through all of this for nothing. His doctors were talking to us today about implanting a brain stimulator in Nick, but he would have to heal from this surgery first for three months, and even then the stimulator is not FDA approved, so Nick would be part of a clinical trial. I can't imagine him having another surgery in three months, but will support whatever he decides.

The picture of Nick looks a lot worse than he actually is. His head looks so big because they packed the wires on top of his head and then wrapped it all up. His eye really is swollen shut, but this is normal.

Since Nick had seizures like crazy (way to go Nick) in 4 hours, and they got the data they needed, he will have his surgery moved up 5 days! This is so awesome!

I am exhausted and feel like this post is not making sense.

more later...

She Sleeps

Wake me up when it's over

Yesterday morning we headed back to the hospital for Nick's pre-op appointment and one last MRI. I planned on having a long list of questions, but came empty handed instead. My main concerns were how long Nick would feel like crap for, what his recovery would look like, and is this going to make an already depressed and angry kid more angry and depressed?
Nick will have a horrible headache and nausea right after surgery, and having seizures on top of this will not help things, but we are doing this invasive monitoring to capture seizures so this is the ultimate goal! I am anxious to finally find out where these stupid seizures are coming from, and even more anxious to hear that he can have a successful resection without affecting his speech or motor function. Nick will have left sided weakness that should improve with time. This is probably the part about this surgery that I dread the most. I hope Nick fully understansds this, it was explained again yesterday and he nodded his head so I know he gets it.
After his appointment with the Dr. we headed to the Seattle Center (after eating at Dicks) and walked around. I begged Nick to go on the roller coaster with me and he finally agreed. We got the front seat and I screamed the whole time! We had a good laugh, though Mike pretended he didn't know me when we got off. After a bag of cotton candy, ice cream, and a deck of cards (Nick wanted cards so cards he got) we headed back to Swedish for his MRI, where we waited and waited and waited. What was supposed to be a forty minute MRI turned into two hours. The Dr. ordered a functional motor hand MRI to help map his motor region, which entails Nick tapping his fingers at the appropriate time while looking through some goggles at a screen. I think Nick was a little confused and the test took a little longer. Poor Nick, he has been such a trooper. I can't imagine trying to accomplish all this testing with a little kid. It has been exhausting. My heart goes out to parents who spend all their time in hospitals. Our time has been minimal, and we're wiped out.
Speaking of grueling, the Dr. says for us to plan for two weeks in the hospital, but if Nick has good seizures (good?) that give them the information they need, then they will be able to proceed to surgery right away and Nick can go home sooner, but if it takes longer to get good seizures then we'll be in longer. Did I mention that someone has to be with Nick 24 hours/day to push the button when he seizes? Did I mention that someone was me? With Mike having no work this winter, he has to take the work now. This is okay. I can't imagine not being with my son anyhow. So lets get down to business...we need prayers for

• Nick


• successful grid placement-minimal amount of swelling and bleeding


• Quick seizures but no grand-mals (tonic-clonics)


• Smooth and steady hands for the surgeon (I noticed he has pretty shaky hands & isn't this a bad thing for a neurosugeon?)


• Good pain control (we have a $100 bet on this) silly kid thinks he won't need pain meds


• Peace if they can't do the resection


• Peace if they can do the resection


• Strength for his mom & dad & family


• Good internet connection so Nick can play poker-stars


• Decent food & good coffee


• God's will

more later...