Thursday, January 24, 2013

Super Joey's 2013 Hospital Visit & A January Full of Ickiness

It would seem that Joey has a bit of an issue with Croup.  Flashback to New Year's Eve 2010 and as we were leaving the house to go to the Winking Lizard for a few wings with Tom's brothers and our sister-in-law from New Jersey and it seemed like Joey wasn't quite himself. We were gone for just two brief hours when a phone call came from the babysitter, "Um, Jen. I think there's something wrong with Joey."

I knew it.  I knew when we left something was going on. We left the wings and beer, picked up Joey and headed down to the ER at Children's Hospital. I thought maybe he would get some fluids and we would head home, but no such luck. This was before his heart surgery to repair his ASD and we ended up ringing in 1/1/11 in room 7220. I will tell you this--a children's hospital is a lonely and quiet place on New Year's Eve and New Year's Day. Luckily after some breathing treatments and steroids and a couple days in, we were able to bring him home. 

The next time he had croup, Tom and I were in California and once again it hit him hard and like a ton of bricks. I knew when our sitter had called up one of my best friend's, Kelly, to help her that things must have been serious. We were literally across the country and were coming home the next day and there was no way to get home any faster. Kelly and LoLo took Joey into the doctor, got him some good medicine and took amazing care of him until we could make it back home.

This time it hit just as fast. On Thursday night he was up with that barking croup cough and on Friday I took him into the doctor where he was given a steroid. We thought he was better over the weekend, but Sunday morning we knew something was wrong. He wouldn't eat. He wouldn't drink. He wouldn't sit up. He just wanted to lay on the floor. I don't know about you, but I'm pretty much the same way when I'm sick (which I am-- Influenza A-- we all had the flu shot, but it still hit).  That being said, since Joey doesn't really "speak" just yet, it's hard to know what to do when he is sick. We also worry about his congenital heart defect and leaky mitral valve and worry that any illness may put too much pressure on his heart, which is what will eventually lead to him having another heart surgery someday down the road.

I thought we might head into the ER, he might get some IV fluids and then we would be able to head home. It's funny how I always think that is what will happen.  It never does...

They drew blood. Took swabs. Tested for strep, tested for flu, tested for RSV--all of which came back negative. Hooked him up to some IV fluids. The Resident and Attending Doctor were baffled. After 8 hours of being on IV fluids and not getting better, and his white blood count coming back at alarmingly high levels, the doctors decided to admit him and started to talk about doing a spinal tap to rule out meningitis.

Would you know it- we ended up back to our old room- Room 7220. I couldn't believe it! What was weird was how excited I was to be in the same room. There was something about the familiarity of it that made me feel more comfortable and I hoped that Joey would feel comfortable.

After about 20 hours on IV fluids our little man started to perk up a little bit and ate a cracker. That was when they decided to not do the spinal tap. Whew!!! From there on out it was more blood draws, more IV fluids and more waiting it out.  Super Joe and I stayed together in his room and watched the Season 3 opener of Downton Abbey

We still don't know what Super Joe had, but by late Monday night his white blood count had come back down and we were able to pack him up and take him home to his own bed.

After a couple more days of rest he was back to himself and we still don't know what he had, but we were glad Super Joe was back to himself.

And then it was....Tommy's turn!  

Photo: Tommy and I were a little sick this weekend.  Upside was hanging in our pjs all weekend!!

Poor Tommy.  I think he slept for almost 24 hours in a row.  It's interesting because when he doesn't want to eat or drink and wants to sleep all the time we don't rush him down to the ER. I would have to say that is because of his ability to tell us how he is feeling and where it hurts.  That is probably the biggest difference between when he and Joey get sick. Because of Joey's history we are a little jumpy and because he can't verbalize how he feels, he is a tougher case to treat. 

Both Tommy and Joey went on Tamiflu last week after being exposed to the flu and knock on wood- they are both doing much better. Me, on the other hand, caught the flu and have been down and out since Monday night. I'm praying the boys continue to improve and don't get it because the real flu is brutal! We all got the flu shots and my doctor said on Tuesday that the flu shot should at least help with the longevity and severity of it. Now we are all on Tamiflu and I'm trying to isolate myself from everyone. 

In the meantime, I have a lot of alone time to read and catch up on things.  Among the things I caught up on was this interesting article about a mom who created a visual chart/map of what it is like to be the parent of a child with special needs. The article appeared on The Huffington Post and was called "Gabe's Care Map"  which was Christine Lind's effort to describe to physician's what her son's care entails. I think her map is amazing! 

Having a child with special needs requires a lot of organization, a lot of patience, a lot of drive....pretty much a lot of everything.  And at times, it requires a lot of everything you don't really have. Extra energy. Extra time.  All those things we seem to seek in just our regular every day lives. Christine Lind's map is an excellent illustration of what it takes.  I explain to people that Joey averages about 5-7 appointments per week, but until you see it the way Christine illustrates it-- it is hard to understand just what this world can look like:

special needs children

Her blog at Durga's Toolbox is devoted to "embracing special needs parenthood with courage, compassion and joy".  It's one of my new favorites and if you are the parent of a child with special needs, you may also enjoy it.

I would be remiss if I didn't mention the waiter, Michael Garcia, who works at Laurenzo's in Houston, and stood up for an adorable little five-year-old, Milo, who has Down syndrome.  A family at another table moved tables so they wouldn't have to sit near Milo and his mother and then continued to make comments about little Milo.  Mr. Garcia finally had enough of it and asked the family to leave.  You can read the full story here.

My favorite part of the story is that Mr. Garcia never told Milo's mom what was going on because he wanted to protect her and Milo's feelings from what was going on.  Having been a waitress before I know what a stressful job it can be trying to keep everyone happy.  It's that prior experience waiting tables that always makes me that much more appreciative of good and kind servers. 

Are you a generous and kind tipper to good service? I hope so!

Is your family staying healthy this new year? I hope so!

Anyone else down with the flu?  I hope not!


  1. Oh goodness, what a rough month you all have had so far! Glad that Joey is finally home! Christine's care map is spot on. . . makes me want to map out all of our stuff to create a visual. I hope that you feel better soon. This flu virus is vicious this year.

    1. Isn't her map interesting? The flu is vicious this year!!!!! Hope you and Ellie are staying healthy and enjoying the New Year :)

  2. Oh my! I hope everyone is getting healthy and stays that way! Even when not well - the boys are adorable as always (it just breaks your heart to see them like that)!


    1. We are through the worst of it! Knock on wood!!:) I learned that tamiflu for kids tastes horrible, but if you add a little Hershey syrup it helps!


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