Tuesday, September 13, 2011

Let me know if there's anything you need

Will is home! We can take a deep breath and sigh of relief. Our boy is home. He is happy. Interactive. Loved, and quadruply hugged. Here's what went down today...

Overnight last night, Will had EEG leads on his head and chest. Remarkably, he slept well. As did Nate, which isn't so remarkable. Nate has an uncanny ability to sleep anywhere and through anything.

This morning, Will woke up normally. He wasn't groggy or lethargic anymore. He was just really mad, and probably hungry. He probably wanted to be in his wheelchair and playing, but because of the EEG leads, the heart and respiration monitors, moving him from his bed to wheelchair was nearly impossible. Will cannot interact well with his world when he isn't properly supported. So the only way Nate could keep Will happy was to again break the rules and sit in Will's bed with him.

By mid morning, all the doctors had completed rounds. Because Will was now passing all of his neurological tests and was markedly improved from the day before, neurosurgery opted not to expose will to more radiation with the tracer shunt test. If he was in the middle of a shunt malfunction, he would not have been alert this morning.

This lead the team to feel that the cause of his seizures was his actual seizure disorder. The current medications are clearly not working to control his seizure disorder. So they spent the better part of the rest of the day deciding what to change about Will's seizure medications. They also left Will's EEG leads on for longer than planned, but by mid morning Nate had figured out a way to get Will in his wheelchair, even with all the leads. Will seemed a whole lot happier.

They were finally released with new medication orders and check up appointments around 5p tonight. Here is a photo that Nate emailed me before they left the hospital. Will in clothes and smiling for the first time in days!

Once Will and Nate got home, we all loved on Will. He ate some food for the first time in two days - this seemed to make him very happy. And then we went to work, putting that boy in the bath... between not bathing for many days and undergoing both a shunt tap and an EEG, there was a lot of gunk to clean out of his hair.

So while we are frustrated not to know a definitive cause of Will's seizures and ordeal over the past several days, we are happy it is over. And none too soon. Because we just don't have enough drama going on...

I got a call this morning from Matt's school. They explained to me that one of Matt's classmates was diagnosed late last night with Hand, Foot and Mouth Disease. Highly contagious to kids. Fun. Once they found out about the diagnosis this morning, they checked all 9 kids in the class. Six of them had blisters on their feet and unfortunately Matt was one of those kids. I had to come and get him.

Deep sigh. What was I supposed to do? I was at work, covering an important installation that I have been planning for 18 months... the culmination of so much work and pride. Oy. So are the decisions of a working mother. Nevermind how terrible I felt that this wasn't something I had picked up on earlier. I got Luke and Matt dressed in nearly the dark this morning... I just didn't see the blisters on his finger.

I got my project to a point where I could duck out and trekked to get Matt. On the trip, I called Stara and Joe, local friends who love their pseudo Slavik grandchildren. Thankfully they were home, available, not afraid of Hand, Foot and Mouth, and willing to take Matt for a couple of hours. Sigh. I love you guys, thanks so much for your help! Matt had a great time and I was able to complete my project. I was also able to get him to the doctor, who told me that Matt does in fact have the disease, but is passed the contagious state. So I don't have to worry about Contagion at my house.

I have been humbled by the amount of love and support coming our way... through emails, phone calls, Facebook messages. It is amazing to know how many people out there follow us, read our stories and love us from afar. I will do my best to return all those notes and phone calls in the next couple of days as things - hopefully - calm down.

When you're going through a crisis, a lot of times people don't know what to do for you. They want to help, they just don't know how. I got a lot of notes that ended with "let me know if there's anything you need." This got me thinking.

Why don't I ever have an answer for this question/comment?

So the more I thought about it, the more I realized that the things I need help with when we're in crisis are things that I don't think anyone would want to do! They're also just regular life things that I cannot get to when one or many of us is living at the hospital. Things that we would do if there was more time and less drama.

I read this article when we were in the NICU that when going through a crisis, you should create a list of things that you could use help with and keep that by the phone. I tried to do this. But it fizzled out three years ago, after Luke and Will's cluster of shunt revisions.

So here I go. My attempt at creating a list of things we need help with (either physical assistance or information assistance)!. And yes, I realize this is incredibly random.

Physical assistance we could use

My van brakes have been squeaking for 4 months. Now they squeak "fix me!"
The van is also really overdue for a oil change. Really overdue.
Otis could always use a walk, brush, snuggle, food, water...
The lawn needs to be mowed
Post office! Chris' belated birthday card is still in my purse
Need to get new drinking glasses because we keep breaking ours
Finish organizing garage and attic
Tile kitchen backsplash
Someone to pick up Luke from day care when we're stuck other places
Food in the freezer. Cheerios was my dinner the other night.
Someone to paint Matt's room. I have the paint.
Find a new CNA. Now.

Information I have been meaning to seek

Does Walmart sell a Mickey Mouse Halloween costume?
Are there dogs that can be trained to sense a seizure?
What is the best way to best publicize a blog like ours?
How on earth do regular people afford vans with wheelchair lifts?
Where should we have dinner for our upcoming 8th anniversary?

The list could go on forever. And get more random. But this is the way we work when life goes in thousands of directions... thousands of thoughts and thousands of things that have to be done another day so you can do the things that are most important.


D said...

I have heard about dogs trained for sensing seizures, but not sure how you go about finding one. I feel like I saw it on Rachael Ray or one of those shows.

Kerrie G. said...

Yes walmart does sell Mickey Mouse costumes in toddler sizes. Here is a link:


Julie Gagnon said...

Yes the do have dogs that can alert you before a seisure starts..I'm no sure where one would look, but I'm willing to research some for you. I wish I was closer so I could help with some other tasks. I'll keep you all in my prayers. Hugs!

Kelly said...

Finally, something I can help with! :) Try the Canine Seizure Assist Society of North Carolina, Inc.: http://www.seizureassistdogs.org/

I'm glad to hear that Will is home, safe and sound (despite contagion scare!). I don't know how you guys do it all.


JoannaP said...

I'd love to paint Matt's room. I ran out of rooms in my house to paint. Also, I can fill your freezer with dinners and treats. Send me any preferences and restrictions.

Concerned Resident said...

Just sent you an email with some ifno (too long to list here). Check it out and drop a line back or call.