Monday, October 4, 2010

Testing complete

Spa McPhee
For those of you who haven't known us very long, this is Addison's second heart surgery at Boston Children's Hospital. One "good" thing about doing the same thing a second time, is knowing somewhat what to expect. Thus, the robe. This day of testing last time, I had dressed her in a cute, very high maintenance outfit that I had to dress and undress her somewhere between 15-20 during the testing. This time, I knew I needed something easy to get off and on. Thankfully, I was able to find this super cute robe to fill the need. Addison seemed to approve. She was rockin' the robe.

It really looked like she was going on a spa date. One doctor asked if her hair appointment was next. We said that her mani/pedi was next and then the hair. (-: I think spa or hospital, it's all in the attitude...and a really great robe. Addison had both of those things today.
So, about the testing....this wonderful day started out with Addison for the first time in her life pretty much refusing to sleep all night.

Aaron and I put on our pretend awake faces and walked her to the hospital in the rain (don't worry, it wasn't far at all and we had her well covered in her stroller)

We then proceeded to have the many tests done (the robe purchase definitely paid off) and met with doctors and nurses etc.

We are all set to have the catheterization tomorrow. Our call time is 9am. The good news is that they are going to try very hard to close the hole during the cath procedure to eliminate the need for the surgery completely. That would be so wonderful, but they just don't know what they are going to find when they get in there. The bad news is that a cath is apparently higher risk that I had originally thought. It's rough when the doctor tells you that there is risk of death with a "test" that your child is having. Also, she has to go under because of her small size, so she will be intubated etc.

The pulmonary hypertension team told us that they are going to check if the oxygen is actually doing anything to help the hypertension. That made me happy. They were very clear that closing this hole may not help the hypertension at all, so there would be no end in sight for Addison being on oxygen. But, if the oxygen isn't helping anyway, we will go to other medications instead.

They will be able to tell us so much more about her level of pulmonary hypertension tomorrow after the cath and what we can do from here to help her. We are praying that they can just close the hole tomorrow and then her little body won't have the undergo the extremely traumatic surgery. Trying to close the hole this way can cause her to need emergency open heart surgery if things don't go well, so also praying that the doctor's have wisdom to decide what would be best for Addison.

Aaron had to leave a few hours ago to go back home to take care of his business, so Chubbs and I are all alone tonight. We're doing all right. Reinforcements arrive tomorrow morning via Aaron's mom and sister. I just hope Addison settles down tonight and goes to sleep early because I could really use some quiet time and some sleep! She literally has been bouncing off the walls today (I say literally because at one point I put her blanket down on the carpet for her to get some wiggles out and she immediately launched herself toward the wall and bounced back) Surely her energy will run out soon????

I hear her blowing raspberries and trying to sneak under the hotel bed, so I had better wrap this up. Please pray for the Cath tomorrow! It's hard to see someone you love so much go through this.....Addison is such an amazing little girl!

Thank you so much for your sweet comments and for praying for us. I could really tell today that a lot of people were praying....

3 comments:

  1. I am praying very hard for you guys. You are such an amazing mom, and God has his perfect plan for you guys. I'm gonna pray that He will give you His hand of comfort and would steady the hands of the surgeons. Cannot imagine what you are going through right now, but just know if I could be there I would be in a heartbeat. Keep having that optimistic spirit! You are amazing.

    (this is your sister)

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  2. I too will be praying for you all. God thinks you are pretty special parents to have entrusted such a special beautiful little girl in your care!!
    Annette PERERA

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  3. My heart's with you. - karen

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