Saturday, October 31, 2009

Halloween Night

I couldn't get a really cute picture of Ethan looking at the camera. He always new when to look away right before the picture snapped.

Gavin and Ethan both LOVED wearing their costumes. They all had some glowing swords to take with them as well.

This picture of Emily makes me laugh out loud every time I see it. I tried to get the red eye out of it but to no avail. She looks like a drunken pirate. Oh my.

Spencer had a hard time coming up with a costume this year but finally settled on this ensemble. Again, oh my.

So as you can see, this year we were a Gang of Pirates and a Disco Man for Halloween. We didn't go to any indoor or organized gatherings in an attempt to keep away from germs. We did however, go around our neighborhood. Spencer and Emily went out on their own and I took Ethan and Gavin down and back on our street.
This was Ethan's first year "Trick or Treating" and I have to say that he was just so cute. At each house he would say "Tick o Teat!" and "Happy Halloweeeeeeeen!". Gavin also mentioned that this was the "Best trick or treating, EVER!"
It was nice to get out and to have a fun filled weekend before the stress of next week comes. Now the fun begins with picking through all of the "loot" for the good stuff when the kids go to bed. So much for my diet. Oh well.

Tuesday, October 27, 2009

One Week

One week from today, the wait will be over.

One week from today, I will be tired from a restless night's sleep.

One week from today, I will put my "happy face" on so Ethan won't be scared.

One week from today, my eyes will be puffy and red.

One week from today, I will be full of confusing emotions. Love. Fear. Sadness. Guilt. Anticipation. Hope.

One week from today, I will hand my "baby" over to a stranger.

One week from today, regardless of any outcome, I will thank the surgeon for his knowledge and for the opportunities that he has given us.

One week from today, my children will be in school wondering if their brother is OK.

One week from today, I will be waiting with a knot in my stomach for any word on Ethan's condition.

One week from today, I will remember "the good times".

One week from today, my heart will ache in spite of it all.

One week from today, I will try to appear strong, but I will weep uncontrollably when I am alone.

One week from today, I will be on my knees begging the Lord for His mercy.

One week from today, I will be so proud of Ethan.

One week from today, he will be pink.

One week from today, I will shed countless tears.

One week from today, I will feel of your love and support.

One week from today, the pain will be too great, and I will feel alone.

One week from today, I will wish things were different.

One week from today, I will regret feeling this way knowing that it can always be worse (and has been for many families).

One week from today, I will watch my son struggle.

One week from today, I will see him confused and in pain.

One week from today, I will want to comfort him, and not know how.

One week from today, our hopes for the future will be bright.

One week from today, Ethan's heart will be as good as it ever will be.

One week from today, I will ask for your prayers, even if I don't know you.

One week from today, our lives will be touched by the kindness of family, friends, and strangers.

One week from today, I will cry because of it.

One week from today, my heart will be break, even though it's Ethan's heart which is truly broken.

One week from today, I will be comforted by my Heavenly Father.

One week from today, I will grieve for all of the mother's who have lost their "babies" too soon, and feel guilty because I still have mine.

One week from today, I will count my blessings and realize how much we are truly loved.

Please keep our family in your prayers this next week. We are anxious and hopeful that things will turn out well.

The countdown is on.


Monday, October 26, 2009

Hence, His Nickname, "Blue"

This is why Ethan's 3rd surgery is needed. I've had a hard time capturing his true color but got lucky with this shot (although this picture still doesn't do his "blueness" justice). His index finger is the worst, but even his overall color compared to my hand shows that he truly does need the Fontan. Last night, we checked his O2 levels and he was about 77-78%. Fontan, here we come.


Thursday, October 22, 2009

Hanging In There

I wish I could report good news, but it turns out that our sweet Emily now has the "piggy flu". We sent her to go stay with my parents yesterday. I think that she got it from Spencer (since I was told that H1N1 has about a 5 day incubation period) and she started with some mild symptoms (just a mild sore throat and a very infrequent cough) on Tuesday. We kept her out of school that day even though she didn't have a fever "just in case". I started wondering if I was taking her symptoms "too serious" and started 2ND guessing myself keeping her out of school. Well, she ended up getting the fever early Wednesday morning which is when we finally took her in and started her on Tamiflu.

Since the rest of us are still feeling good, I am really hoping that we now have it contained. We quarantined Emily for the day prior to her having a fever "just in case" she got a temp.

I also talked to one of the Nurse Practitioners from surgery and she said that as long as Ethan himself wasn't showing symptoms, to plan on going ahead with his surgery. I guess only time will tell. Until then, we will continue living in our Lysol aerosol cloud.


Sunday, October 18, 2009

I'll Tell You What's Next!

You know on my last post titled "What's Next"? Well I have an answer for you. Drum roll please.......................SWINE FLU!!! That's right. My sweet, sweet Spencer is now a confirmed statistic in this year's flu scare.

He started feeling a little yucky Thursday night, but nothing distinct. He was feeling tired and said that he was coughing in first period earlier that day, but not since. He felt well enough to go to football practice and everything earlier that evening, so I told him to wake me up in the morning if he still wasn't feeling well and that we would keep him home from school . He never said anything more about it and went to school on Friday. However, once coming home from school he said he was tired all day at school and was now starting to get a headache. We'd taken his temperature several times since his first complaint on Thursday, and just like the other times, he had no fever. So, I told him to go and lay down and rest if he was feeling tired. Well, a couple of hours later he came into my room and said that he thought he was feeling warm. We took his temperature and this time it was 102.6.

By this time, Tim was on his way home from work and so he took Spencer to the InstaCare for a diagnosis. They did a full workup on him and felt that he had H1N1 since everything else came back negative and he was showing the "classic" symptoms. They started him on Tamiflu, and he's been staying at my parents house ever since.

He doesn't seem to have a terrible case of it. He's mainly tired and has been having headaches along with the fevers. I was really hoping that it would be something else since he hasn't been too sick. But no such luck. We got the phone call today that said he is indeed positive for the swine flu. Yeah! (you know I'm being sarcastic, right?)

So, I've sanitized our house and so far (knock on wood) none of the rest of us are showing symptoms. I REALLY hope we nipped it in the bud since we can't afford Ethan getting sick right before his surgery (especially with H1N1!).

I tell you, this H1N1 thing scares me.


Friday, October 16, 2009

What's next?

So they say that it comes in 3's. For us this last week this meant, our SUV broke down and was in the shop for 1 1/2 weeks, Tim's cell phone died after getting wet, and our Internet went out for over a week. Needless to say, I've felt lost without my normal transportation, a way to talk to Tim when he is not in his office, or a way to check up on my e-mail, on-line accounts, or my fellow on-line friends. So, in case you thought I was rude (or just keeping to myself like I have a tendency to do sometimes), I was REALLY out of commission this time. I know that it is hard to tell sometimes when I do go for long amounts of time without a post. But this time, it truly wasn't my fault.

You'd think that without all of these things out of commission, that I would have a lot of time on my hands. I assure you that this is far from the truth. In fact, I've had a lot of prior commitments (work, carpools, meetings, trainings, Dr. appointments, preschool, soccer games, football practices) all of which complicated this situation. Luckily, as of the last 2 days, all things are back to normal and my stress level is beginning to return to normal.

That is, until this morning.

Ethan's surgery is in less than 3 weeks now and I've started having the bad dreams that always seem to come when I am stressed. Just the other day, I dreamt that we were handing a teary eyed Ethan over to the anesthesiologist when she informed me that she was just "on-call". I was fear stricken and yet couldn't tell her that she couldn't be in on his surgery. Lame. I know. But really, those type of dreams are very stressful.

Anyway, getting back into real life. Just this morning Ethan and I were playing the "What's this?" game. You know the one where you point to a body part and the child tells you what it is. Well, Ethan and I were play this game and at one point I pointed to his chest and asked, "What's this"? Ethan told me in his cute little voice. "Scar". No bid deal, right? But then, he innocently asks, "all better?". I have to tell you that I didn't know what to say. What am I supposed to say? He's only 2! Who knows how much of this he really understands? And so out of my "Mommy wants to make it all better tendency" I said "Yes. All better".

The only problem is, right after I said that, I felt SO guilty. I know that it's not "all better". It's not ever going to be. But how do I tell him that? Especially when he is going into surgery in just a couple of weeks? I don't think that if his surgery was so close that I would even be struggling with this right now. It's just that I don't want him to feel like we set him up.

I want to talk to him about going to the hospital. Let him know that he will have "owies", but that he will be OK. That we will be there with him, and that he will never be alone. I don't want him to be scared, but I also don't want him to feel like we are tricking him. I don't know where the balance is. I have a hard time being optimistic and also being realistic at the same time. Especially when I don't know how much he understands what is going on.

So anyway, to wrap up a long story. A couple of minutes after my confirmation of "all better", I rescinded my comment. I sit here with a tight throat and tears in my eyes, because I decided to tell him the truth. I told him that the "Dr.'s need to fix your heart again". And do you know what he did? To my surprise, he got MAD. He put his hand to his chest and started yelling "ALL BETTER, ALL BETTER"! And then he ran out of the room. I, however, sat and cried.

Where's the balance between being honest and preparing your child for trials they will face (in an age appropriate manner, of course) vs. hiding the truth from them to keep their innocence (but feeling like you're tricking them along the way)?

Oh, the stress of it all.