May 09, 2015

Freedom!

There is not much that feels better than being released from the hospital after a week of living there! Eauwr this week I said all I wanted for Mother's Day was to be out if the hospital and I got my wish!

This is what freedom looks like:

Last night Evan talked about some of his concerns about having brain surgery. We told him we wouldn't make this decision without him and that his opinion is very important. Nervously, I asked him if he wanted to have brain surgery and he said, "I'll take any risk to cure myself." 

He also talked about missing Aria:

Evan: dad, if I tell you something will you promise not to tell Sria?

Rob: (hesitantly) ok...

Evan: I really miss Aria. I wish she was here.

I wouldn't have posted this except that when he spoke to Aria on the phone this morning, the first thing he did was tell her how much he missed her. The boy cannot keep a secret-- not even his own!

We are on our way home now and will be back in time for dinner! It will be great to see Aria and Grandpa Jim!

May 08, 2015

2015 VEEG - Day 5

Today was a calmer day. Since Evan had a seizure last night there was no pressure or stress about getting the necessary information for a surgical evaluation. Also, because he had a seizure at 10:30 last night nobody had to stay up until 4am!

Evan didn't have another seizure but they decided to still do the SPECT scan. The radioisotope was injected at 3:00 pm and he had the scan at 5:00 pm. It was impressive to watch him lay perfectly still for 30 minutes without sedation. I know a lot of adults who would have trouble with this. The machine zoomed in close to him and rotated.


At this point, we started him on his meds again and hopefully will get discharged tomorrow morning. There is a bit of wild card though because if he has a seizure tonight they will probably keep us another day. We are hoping he doesn't have a seizure tonight but because he hasn't had any medication in a few days we don't know exactly how things will go as he ramps back up.

Fingers crossed for no seizures tonight!

May 07, 2015

2014 VEEG - Day 4

We managed to keep Evan up late again but we also had a new challenge: a stomach virus for Rob and Evan. They were both sick all night and into the day. Evan was given an IV medication for the nausea and Rob went to the ER for fluids and nausea medication. I spent a good portion of last night and today sanitizing and re-sanitizing -- our room now has the reassuring scent of bleach. The nurses gave me my own container of super strength bleach wipes and I am considering it an early Mother's Day gift!

Rob and Evan are both doing much better but we have all been quarantined, at least for today. Whenever people come into our room they suit up in a blue plastic gown we have been referring to as hazmat gear. Hopefully that restriction will be lifted tomorrow.

As for seizure activity, we had a busy day. He had a simple partial seizure at 7:15 this morning but it didn't evolve into his more typical complex partial status seizure. Then he had his typical seizure this evening. He fell asleep doing his homework and had a seizure shortly after that. We will have more info tomorrow morning.

We have also made huge progress on Evan's needle phobia. The nurses have been great and Evan keeps a keen eye on his IV port and was asking frequently if it needed to be flushed. They taught him how to do it and now he flushes his own UV when they come in! 


There is a special place in heaven for pediatric nurses!

May 06, 2015

2015 VEEG - Day 3

It's amazing how the days start to blend together while staying at the hospital. Evan is in good spirits and has had a lot of fun activities to keep him busy and has enjoyed playing video games in the playroom with some boys his age.

It looks like we effectively switched Evan's days and nights. He was up until almost 4:00 am and slept until 11:00 am this morning but did not have a seizure. We spent a good portion of the day with a nurse stationed just outside our room and an ominous metal box containing a radioactive isotope sitting near Evan's bed. 


Our nurse was ready to jump into action if Evan had a seizure and would have injected the isotope into Evan's IV and scheduled imaging.

Without a seizure, all drama was postponed while we continue to chase Evan's elusive seizures.

At this point we have taken him off all medication and he will stay up until 4:00 am again. We will see what tonight brings.

May 05, 2015

2015 VEEG - Day 2

Today was a busy day! Evan played video games, watched a movie, created an art project, made smoothies, met a magician and had a music therapy jam session!


We had to try again to get an IV and this time they brought in a nurse who has the reputation of always getting the vein. He was amazing: gentle, soft spoken, calm, confident and precise with a needle! Evan was quite nervous but had no need to be and we were all relieved to see the IV functioning perfectly.

Evan hasn't had any seizure activity yet so we will reduce his medication tonight to see if it will push him into having one. We spend so much time trying to prevent seizures that it is hard, even after years of doing this type of testing, to fully embrace the idea of wishing for a seizure. But we don't get to leave until he has one so, seize baby seize!

They also want to do is a SPECT scan. This requires an injection of a radioisotope as soon as Evan has a seizure followed by 3D imaging to determine the specific areas of the brain impacted by his seizures. The challenge is that Evan's seizures typically happen in his sleep and they have to have a nurse sitting next to him ready to insert the radioisotope and at NYU this has to be done between 9am and 3pm. So, they will try to switch Evan's days and nights to get this test. They want us to keep him up until 4am it too! Yikes!!

May 04, 2015

2015 VEEG - Day 1

The first day of a video EEG always has its ups and downs. 

We were up early to travel to NY and met with Dr. Devinsky before checking into the hospital. Evan did a great job getting the EEG hooked up. This used to be so hard but he's growing up and some things are easier now.



We had a visit from a therapy dog that everyone enjoyed, especially Mindy!


Things turned a little for the worse when it was time to put an IV in. Evan has a lot of anxiety about needles and the nurse blew the vein when she tried to insert the IV. Evan was doing so well up to that point and then made it pretty clear that he didn't want them to try again. We ending up refusing the IV at least for tonight. We will revisit the conversation tomorrow.

NYU or Bust!

We are on way to New York City and looking forward to seeing the brilliant doctors at NYU Hospital who have always been so good to Evan. 


We have an appointment with Dr. Devinsky at noon and after that visit Evan will be checked into the hospital for monitoring. He will have a video EEG and luckily he didn't have s seizure right before our trip so hopefully he will have one quickly while being monitored and we will be able to get some answers soon.

It's a strange feeling to take your child to the doctor for evaluation for brain surgery -- you hope they say he'll be a good candidate for surgery and you dread the reality that comes with that knowledge. In the end the best possible outcome is to have options, so that's what we are hoping for!