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!