Post-op

I keep meaning to come give an update but my arms have been glued to a sweet, and very swollen, little boy!

Surgery went VERY well! They told us it would be 3-4 hours and after 40 minutes they paged us. I completely flipped out and went running across the hospital because I had gone up stairs to get some Internet access. The neurologist called us back and said that it was done and the surgeon was closing him up. We were floored! the tuber was right on the surface and they removed a few others that were behind it too. A good section of his temporal lobe is gone now.

In recovery he was very upset but thankfully not puking! The first night was actually pretty calm because they had him on a morphine and valium cocktail, but it's been pretty rough since. We've kept the Tylenol with codeine in him on a regular schedule but he is just not himself! He is extremely swollen and in some pain. We can give him morphine every hour if we want but it doesn't seem to really help much. We finally got some Valium put back on his chart and that seems to do the trick better. He has also been very constipated. We managed to get some of that taken care of this evening but his belly is still a little swollen.

He is on high doses of steroids which don't help either. He is just mostly a cranky child. But the awesome news is that he is exactly the same child that went into surgery! He is talking the same and screaming "all done" anytime a nurse walks in the room, he can move both sides, pass objects between his hands, raise his hands up, self feed, kick his legs, and play just like before. And the best part is that we haven't seen a seizure since!

Yesterday he enjoyed riding around in a wagon! Today he enjoyed sitting in mama's lap in a wheel chair and going outside for a walk. He wanted nothing to do with the wagon today and was very upset if mama wasn't holding him. He wants daddy in the room too but mama does the holding. I got peed on 3 times today and anytime I needed to use the bathroom, he flipped out while I was gone. It's pretty exhausting to have a 36 lb toddler glued to you like a leach when you are exhausted from being in the hospital, but I am just so glad that he is doing so well and that the hard part is behind us that I will sit with him clinging to me for as long as it takes.

The kindness and generosity of others has been amazing as well. I don't know if I will get around to writing thank you cards at this rate. I optomisticly brought some to fill the time, but I have to laught at myself for that now! But know that we are so grateful for the cards, emails, gifts, food, prayers, alcohol, and company, there simply aren't enough words to express our gratitude or how loved and supported we all feel.

We are hopeful that we get to go home on Sunday or Monday at the latest. It depends on how the next day or so goes but it is looking like it will be soon. We are about to start keto for a final 3 month stretch and then wean to a much easier diet known as the modified Atkins. We are very excited about this!

I'd better go to sleep before it gets too late but I will post some pictures from the hospital after we get home. Hopefully nothing too eventful happens between now and then.

T-minus 11 hours

Surgery is soon!

I am nervous, excited, and enjoying an adult beverage brought by a friend.

The docs are confident that we have collected enough data, even tough he hasn't had one of his big typical seizures.

They will take us back around 7 and surgery is scheduled for 8.  Our neighbors, who we know from our epilepsy support group, had surgery right after Jack last Wednesday and will be doing the same tomorrow too.

Last night Jack was up from midnight to 4 and then woke up at 8 for the day.  He didn't nap all day and just finally fell asleep not long ago.  I really hope he sleeps all night!

I'm not really sure what else to say.... it's been a very long week and the next few days are going to be rough.  We have had so much support and it has been wonderful and really helped us through.

Here are some Seize Hope pictures:

 Christy and her dog are Seizing Hope here in Austin! 

 Here is Jack taking boxes to the post office to ship off to some of his friends!  

 Port Saint Lucie, FL

 

 Downington, PA

Albequerque,  NM

 

 Dallas, TX

Anaheim, CA

 Plano, TX

Fort Worth, TX

Leander, TX

 

And these are just the few that I have pictures of on my computer.  They have gone as far as Canada, all over Austin, I know of 4 class rooms here in Texas where these have been handed out and Jack has even gotten many cards from the kids.  Total so far 900 bracelets and cards spreading epilepsy awareness have been handed out.  I have another 500 (300 adult, 200 youth sizes) arriving on Thursday so if you would like some to help the cause, let me know!   

A huge special thanks to some Real Mom's out there who got all of this started and who have spread this nation wide.  This has given me something so positive to focus on during a very stressful time.  I will forever be thankful.  

If you are the praying type, please keep Jack, the surgeon and his team, and our family in your prayers tomorrow.  Seize Hope! 

Day 5

We are on day 5 here and have yet to actually kill anyone. 

It has been super rough on all of us, especially Jack.  He just is not himself and we are getting tired of having to physically restrain him from pulling at his head. 

2 nights ago they were threatening to send us back to IMCU (intermediate care unit) because his sodium levles were so low.  We had to crush a tablet and force it down him but it worked.  Then the next morning he hadn't had a wet diaper and they were threatening to cath him again but he has a little bit of trauma from the first time they did that and doing it again certainly isn't going to improve that.  They did an u/s and his bladder was very full he just wasn't releasing it.  Thankfully he peed (all over Jonathan I might add) shortly after that.  Twice. 

Jack is also refusing all oral meds now.  Before we came to the hospital he was doing great with the syringe as well as swallowing a pill.  Now though he is spitting everything out and getting anything into him has been awful.  We aren't sure what to do anymore accept pin him down and try to force it down his throat.  It's been awful.  The poor kid is having a really rough time and refusing the meds isn't making it easier.  The only thing that really calms him down is the IV morphine. 

Last night they had to re-wrap his head 3 different times.  It was traumatic for all of us.  I yelled once, cried once, and it took everything in me to not kick someone out of the room.  I have said that she doesn't get to wrap his head anymore. 

This morning he finally wanted to sit on the floor and play for a bit.  He is eating well, though he doesn't like anything sweet, and drinking plenty too.  This morning they finally unhooked his pic line so that's one less cord to worry about. 

Jonathan and I are switching off sleeping.  I'm at the hospital curled up in his crib with him all night, either trying to dose or watching Elmo with him, while Jonathan leaves the hospital to sleep, and during the day I get away for a few hours to rest.  It has actually been working really well and I think saving our sanity.  It is so hard to rest there and of course they have to mess with Jack every 2 hours even if he's sleeping. 

They are thinking they may take him in on Wednesday for the 2nd surgery even if he hasn't had one of his typical "big" seizures.  He is clearly miserable, the risk of infection goes up the longer they wait, they do have 3 small seizures on the EEG along with lots of activity and it all lines up with where the abnormality is.  It would just be nice to get one of the big ones to make sure they get everything.    

Brain Surgery, stage 1

I finally have a few moments to sit down and type for a minute.   Wednesday we came in early and surgery went very well.  The doctor could actually feel the tuber that is causing the issues when he opened him up.  That bodes well for actually removing it.  We saw a picture of his brain with the EEG leads laying over it. 

The placement was uneventful and they expect no complications, which is great.  What's not great is the amount of vomit and pain from my poor baby.  He was in the PICU for over 24 hours because his blood levels were not good at all.  Blood sugar was through the rough, C02 was practically nothing. CBC has been low as well as his blood gas is wonky.  It took quite a while to get everything stable.

Wednesday night I sent Jonathan home to sleep and I slept in the crib with Jack.  He would let me out of arms reach.  He kept puking.... on me, but was begging for water and ice.  It was a really rough night.  It was so hard to see him in so much pain.

Then yesterday he slept quite a bit.  I came home to rest for a few hours and Jonathan was there with my parents.  I don't think he was awake longer than 30 minutes at any time.  Usually when he was awake, he was crying and needing pain meds.  He's not a fan of everyone messing with him and all of his cords keep getting tangled.

The doctor said that he had a sub-clinical seizure around 6:00 that morning.  Sub-clinical means that his body didn't move but his brain did seize.  He needs to have more seizures though.

They finally moved us out of the PICU at about 5:00 yesterday and got us into a regular room.  We have a friend who is a nurse in the unit we are in who has been a God send.  She only worked on Wednesday but has been calling and checking on us as well as calling the unit and setting us up with the best nurses.  It's been great.

Last night we got all snuggled into the crib again (I had sent Jonathan off to get some sleep) and at about 11:00 PM he decided he was going to wake up and chatter for a bit.  He seemed much more like himself!  We watched Elmo and a movie and more Elmo on the ipad.  He also ate some ice and drake some Juice.  This went on until about 3:30 when he finally dozed back off only to be messed with at 4:00 for vitals and meds.  Then he woke at 6:00 and was determined to get out of the bed!  I held him for a bit and then not too long after Jonathan got there we managed to get a play mat on the floor and he sat there and played with some of his new toys that people have brought him.

The doctor decided to take him off the ketogenic diet while in the hospital.  We were a bit stunned by that!  Of course he isn't eating anyways right now but it makes the meds and IV fluids he can have easier to figure out and whenever he does start eating we don't have to weigh everything out.  He will go back on the diet as soon as he has some seizures.

Everyone has been really great to us, keeping us well supplied with food.  We really appreciate the gifts, drinks, food, and visitors.

If we can get some seizures soon then they will move his surgery to Monday, which would be awesome. 

Bald is beautiful, but a mohawk totally rocks!

This is mostly a picture post.  We figured we would have some fun with Jack's hair considering his head has to be shaved anyways.

I love Jack's beautiful white blond hair.  People always comment on how amazing it is and I love the curls in the back. 

 

He did pretty well with the actual cutting.  He had Elmo, food, and a mirror.  Of course he is a very active 2-year-old which I think is what kept me from crying!  

And it turned out okay!

After we spiked it with purple gel, we put his purple t-shirt on and took him outside to take some pictures.

 

For those who say that he has a fat baby belly, I give you proof that his baby fat is quickly vanishing.

 

He kept saying "hair" and the "purple".  When we were inside he would run to the mirror and laugh!

A few of the neighbors came out and this is what Jack does when he sees other kids.  It's pretty cute.  

 

Everyone took Seize Hope bracelets and cards.  

 

He learned how to say "Longhorns Score" yesterday :-) 

This is what he does when he says, "Oh No!" 

I think it actually turned out really cute.  We are going to spike it purple again for his pre-op appointment! 

The Schedule

The next few days are rather hectic around here.  Mostly because Jack is teething therefore not eating well which means I have no idea what he is going to eat while at the hospital.  I'm assuming that he isn't going to eat much the first day or so.  Lately he is very into eggs and bacon with strawberries, a pumpkin muffin that I have and is easy, and hotdogs.  Today was the first day in a full week that he actually ate lunch, and it was pretty exciting.

Last week we met with the surgeon and it went very well.  They are going to put EEG leads over his right temporal lobe and some of his right frontal as well.  Might as well make sure they get everything.  The doc said that you can tell from his MRI that there are lots of lesions on the temporal lobe.  He doesn't think Jack will need any kind of rehab after and thinks that his development will just skyrocket.  We hope and pray that it all goes as smoothly as the doctor thinks it will.  We have had to start reducing his seizure meds because the new one is working quite well.  Of course after failing 7 of them it is statistically impossible for this one to actually work and it's pretty typical for Jack to have a "honey moon" period on a new med that is a good one for him.  The doctor is only going to put him on 1 med after surgery!  We are very excited about that.    

Tomorrow we could go to a tour of the operating room at the hospital.  It's at 1:30 so he will probably be up from his nap but I am so nervous about him getting sick we will probably skip it.  I had a full blown sinus infection last weekend and Jonathan has had allergies.  It's only by the grace of God that Jack hasn't gotten anything.  With all the smoke here from all the fires the last few weeks it seems like everyone has something.

Tomorrow we are also giving him a Mohawk, pictures will follow.

Jonathan will go to mass tomorrow evening, I am staying home with Jack to avoid any contact with sick people.  Sometime before the surgery he is supposed to be anointed but I don't know when that is going to fit in yet.  

Monday, if Jack takes an early nap like he usually does, we are going to have lunch with Jonathan at his last full day of work at this job and then Jack has swimming lessons at 2:00.  It will be the last one he gets to go to for at least a month.  Jonathan will start his new job on October 3rd, which is a Monday. 

Tuesday is when things get really interesting.  We have his pre-op appointment at 11:00.  That was the only time they had available, which is an awful time for Jack.  He naps from about 10:00-12:00, sometimes a little more, sometimes a little earlier.  But it's just going to be rough.  He will get blood work done and we will meet with the anesthesiologist.

Wednesday morning we go in for surgery.  He will be the first one of the day and we know that because we know the other family who is having the same surgery that day.  Jack is the youngest and youngest always goes first.  Jack will likely be taken back for surgery at 8 (I'll find out for sure on Tuesday morning), which means we have to be there at about 6, leaving at 5ish, getting up at 4 to pack the ice chest.  Nice hu?

Anyways, they will put a pic line in, which is basically a more permanent IV.  It will be in the whole time he's in the hospital but after it's in they won't have to remove it and move it like they would a regular IV.  I remember them moving the IV around on me a zillion times when I was in the hospital after my elbow surgery and it wasn't fun.  I'm actually very glad they are putting in the pic line.

After the 1st surgery he will have EEG leads on the surface of his brain and be hooked up to be monitored.  He will go to ICU for 7-24 hours and then be moved the the EMU (epilepsy monitoring unit) which we have been in multiple times before.  They have the room fully monitored by video and a team of people in a little room constantly watch the EEG's and the video.  Then we wait.  Once he has a seizure the doctor will "map" it 3 times to figure out exactly what needs to be removed.

The second surgery is actually scheduled for the 28th, but it could happen sooner.  It all depends on how long it takes him to seize.  After that surgery he goes back to ICU again and then to a regular room but I hear they bounce back pretty quickly.

This is all very exciting!  It's the most nerve wracking thing I've ever been though, but he could actually be seizure free after this.  I hesitate to even let myself imagine what that would be like, but it is liberating. 

I have been sewing lots of little hospital clothes.  Keeping hospital gowns on him is impossible and he can't have anything that goes over his head plus we have the pic-line to think about.  When he was smaller Carter's made great snap on outfits, but sadly they don't make them in a 4T.  So I made these that snap up one side and on the shoulders.  He has slept in them a few times so I'm hoping they are familiar and feel like something from home.  They turned out pretty cute!

And this is one of my favorite most recent pictures of him in his Sesame Street snap-on's.  I need to blow it up and frame it. 

 

Look at that beautiful hair!  

 

Don't take food from strangers!

I met a friend of mine at Lake Line Mall last week for a play date.  She has 2 little ones and her little boy is only a few months younger than Jack.  When I got to the mall I asked how often the play area is cleaned, because those places are usually covered in germs, and they said they clean it every day.  We got there right as it opened so I figured we would risk it. 

Initially we were the only ones there.  The kids were having a good time.  The thing that I like most about the place is that there is no food allowed.  Or so the giant sign says!  I'm sure you can see where this is going...

As the mom of a keto kid, I am constantly scanning for food on the floor, watching for people that are eating so I can steer Jack someplace else, and always aware of our surroundings.  I usually keep Jack right by my side (or follow 2 steps behind him) when we are out in public.  Of course we all know that things can happen so quick.

Well, my friend and I were sitting there talking and the kids were on the other side of the little play area, probably 10 yards away, when I looked up to see a woman holding a Ritz cracker out for Jack to take.  The only thing I could do was scream and yell not to give it to him.  My voice echoed through the mall from the tile floor and the woman jumped about 3 feet in the air.  Poor Jack was standing there with this look on his face of, "I don't know if this is a good idea" and he wasn't even reaching for the thing, thank God.  We wonder how much about the diet he understands.  He gets that his food is different and he gets that he has his food and we have ours, but I'm not sure if he gets much beyond that.

We're talking about a kid who loves lettuce, because it's a special treat, and a kid who thinks black olives are the best thing in the world.  He's never had a cookie in his life, never had an m&m, never had gluten.  Thankfully he doesn't know what he's missing, but he is curious.

The woman, clearly a grandmother there with her granddaughter, probably about 60, was completely ashamed.  I told her that you should never give food to a child you don't know without asking the parents first.  EVER!  I also told her that one cracker could make him have seizures for 2 weeks.  She apologized profusely and I clearly scared the crap out of her.  I just hope that she doesn't try and do it again with another kid.

There are so many food allergies, diet restrictions, intolerance with gluten and/or casein, the list goes on and on.  So the Public Service Announcement of the day is PLEASE, if you don't know the child (and maybe even if you do) don't give them food without asking their parents first.  Because clearly if you offer it to my kid, you get screamed at in public.

I think it took all day plus most of a bottle of wine for my heart rate to come back to normal!  And the main reason it freaked me out so bad was the last time someone gave him something, and the only time that I didn't get there in time to stop them, he immediately had a seizure after going 63 days without one.  I was in a group of mom's, someone gave him a dried cranberry that I dug out of his mouth 1/2 chewed, and he had a seizures.  I'm running with him in my arms, saying "Jack, look at me baby, are you okay?" and laying him on the floor to see if he's okay, and no one even asked if I needed help or if he was okay.  Some people are just oblivious.  Please don't be one of them!    

Seize Hope: The Month of Jack

When I was pregnant with Jack I stumbled upon a site called Baby Center.  They have message boards where pregnant women go to complain, find out tips to start labor and what to pack in their hospital bags.  I'm a part of a private group, one that you have to have a password to get into, of about 55 mom's, all with kids the same age as Jack.

The posts are far different now.  Now they are about potty training, the dog eating the poop off the floor after the kid decided not to go in the potty, a drunk post here and there (I don't know who that could be, ahem ahem), and even everyone's accent.

I have even met a few of them.  One lives right up the street and we get together for play dates on occasion, some that are not too far from Houston and we have met, but most have just been internet friends. 


These women have been a wonderful support when it comes to all of Jack's stuff.  So much so that they have deemed September "The Month of Jack".  They are spreading awareness all over the country.  They had wristbands made that say "seize hope" and I am having 4x6 cards printed up to go with them to spread awareness about TSC and epilepsy.  They are also doing daily facebook updates with facts about TSC and epilepsy. 

Here is what the bracelets look like!  I love that they are unique and draw the eye.  I have adult sizes and youth sizes.  The youth one would fit a child 5 or under quite well but might not work much past that age. 

Here is what the front of the card looks like.  I don't have these in yet but will hopefully get them soon. 

And the back of the card. 

I have already has a few people ask for some to hand out!  And of course that is awesome.  The point is to spread awareness and this has really given me something good to focus on in such a crazy stressful time.  So, if you would like to hand some out at work, or your children want to hand them out to their class mates, let me know!  I am ordering extras because I've had so much interest already so I should have plenty.

If you would like to make a donation in Jack's name to the TSAlliance, that can be done here.

We also have a trust set up in Jack's name to help cover medical costs and you can email me for more info on how to donate to that if you would like.

With all of that being said, no donations are at all necessary.  This is the month of Jack and the point is simply to Seize Hope!