Sunday, March 31, 2013

Easter Stories

Today is Easter and it is the first "real" holiday that we haven't been able to celebrate in our traditional way. Not bad considering we live with a medically fragile kiddo.

On Friday, Tess started having what looked like petit mal seizures but they looked so totally different than I was used to seeing with her that I just didn't know for sure so I called Sheila. We Facetimed so she could watch Tess. She didn't like what she was seeing and called the pediatrician. She was instructed to tell me to go ahead and give Tess her rescue meds to try to stop the seizures.  When that didn't seem to stop them, I called her pediatrician back and was told to get her to the mainland on the next ferry. As I rushed to get ready, she finally fell into what looked like a comfortable sleep and since we were told we could stay home if she stopped, we didn't bother getting on that boat. However, she woke up around 3:50 and started in again with the weird twitches and jerks.  I debated about what the heck was going on with her and then, at 4:05pm decided that I did not want her on the island for the night. My Tessie radar was going off fairly loudly. So after rushing around like a maniac, we boarded the 4:30 (and last for the day) ferry to Rockland.

Yes, I am impressed that we actually made the boat in that short amount of time. I had to pack for myself and Tess and try to think of the possibilities:

Will she be admitted into the hospital?
Will we end up at Sheila's?
Will we get home tomorrow?
If not tomorrow, when?
How much clothing will she need?
How many diapers and wet wipes?
How much of her enteral food and supplies do I need to pack?
Grab extra oxygen for boat ride.
Grab oximeter and plug.
Don't forget daily meds in the pantry. 
Don't forget jump bag.
And for all that is holy, don't forget to bring Baby Tad!

The hubby kept asking me if I wanted him to come with me but I figured he was better off staying home because Ellie was there plus Blake was coming home on the last ferry from college for Easter and I didn't want her to come home to no parents around. 

So Tess and I rode the ferry. Alone. With her seizing. I will not make that mistake again.

For the hour and fifteen minutes we were on the boat, she seized. Small ones that cycled over and over and over again. 

Stressed? Yeah, you could say that.

I got off the ferry and drove straight to the ER where we met Sheila. The doctor agreed that it looked like she was in a seizure cycle and called the on-call pediatrician as well as Tessie's regular pediatrician. They were told to administer IV Ativan  which seemed to calm her down (and make her start giggling at LaLa Loopsy on TV). They then did a chest Xray that came back as "suspicious" for pneumonia so she got a shot of antibiotics. The hospital had no empty beds and the docs wanted her admitted so we spent the night in the ER and were moved to a room early the next morning.

                   Just chillin' out in the ER. No big whoop.

When Tess woke up the following morning, she started cycling back into seizures so more meds were given and we were told we would definitely be staying another night which meant we would not be getting home for Easter. 

When the girls found out we couldn't come home they offered to bring all the "Easter Bunny" supplies here so they could have their Easter baskets with Tess. Yup, my girls are awesome. 

They arrived this morning with the hubby, loaded down with Easter goodies that I had to get ready for them. After giving them strict "No Peeking" instructions, I laid everything out. Not exactly the pretty display that the Easter Bunny usually puts out for these girls but hey, it got the job done.

They dug into their loot, laughing at the tags still on everything and the way things were falling all over the place then they showed Tessie her stuff. Tess really didn't care and was basically very irritated that her movie got turned off so she could visit with her sisters. So she did what she does best when she is mad. She went to sleep. 

             Tessie is not impressed that her movie got turned off for this.

We were all sitting around discussing Blake's latest essay I had helped her with for a scholarship and then she asked if I would help her with her paper for her Lifespan Development Class. This paper was basically exactly what it sounds like it would be. An autobiography spanning Blake's life and development.  So we all got to telling our favorite stories about when the girls were little and man oh man, the things you remember that you had sort of forgotten about. For example her fascination with The Lord of the Dance when she was three and her total obsession with carrying around a small Bible in a purple, velvet Crown Royal Bag when she was about four. Then there was Ellie who used to dress up EVERY DAY in a Belle costume complete with tiara and scepter and wear it downtown and when people would tell her she looked pretty, she would reply with, "I know."  Needless to say, we had lots and lots of laughs. 

                           We're ready for our closeup, Mr. DeMille.

And after they left I was thinking. Would we have talked like that if we had been home? Just spent time hanging out with only the five of us, enjoying each other's company and telling funny stories about the girls? I don't think so. Between laptops, boyfriends, TV, work, and just life in general, we would have done our usual Easter morning but then probably have sort of broken off into different parts of the house until it was time for dinner. 

So you know what? THIS Easter? This HOSPITAL Easter? Crazily enough, it was a happy one. 


  1. I'm so thankful that Tessie is ok and that you all were able to still have a memorable Easter together!

  2. It sounds like you had a terrfic Easter despite your unsettling circumstances. You are all incredible so it is no surprise that you had a happy, love-filled happy Easter. I missed you and Tess at dinner last night. Love you guys.

  3. Finding that silver lining. Isn't that one of the many things we learn having these special kiddos?

    And it sounds like your big girls have learned it, too. These siblings of special needs kids are something else.

    I've said it before and I'll say it again - you, an island, a ferry. You are one brave and courageous woman. I would be a constant nervous wreck.

    Have a great weekend, sweet friend! :)

  4. I AM a constant wreck! haha! The pedi on call actually told me, "You need to move off of that island!" Ya think?! ;)
    I hope you had a nice Easter with your family!