Monday, August 23, 2010

Heart Surgery, Leukemia- Stroke

Our day started at 8:30 am at the hospital for an appointment with Addison's cardiologist, Dr. Yeager. I knew that he wasn't going to let Addison off of oxygen. I just knew even before he told me. Even though her oxygen saturation numbers are great without the oxygen, her heart/lung pressures are still extremely high, even after her heart surgery and six months of almost 24 hours a day of oxygen and sildenifil every 8 hours. Sigh.
He went as far to say that her second hole (which they hoped would close up on its own) hasn't closed at all and we should talk about closing it surgically. He said that that perhaps still wouldn't solve the problem, but was our best bet at this point. He said that we should schedule the surgery before she hits the 9-12 month range since it is just unsafe for her to continue with these high pressures. He said there is a slight chance that it could be closed via catheterization, but that that was ill advised for a baby Addison's age. Hopefully that isn't entirely out of the picture. Sigh. It looks like we still probably be heading back to Boston for another heart surgery within the next few months. They will decide and call us back in a few weeks.

Addison watching Baby Mozart during her Echo....I think she actually enjoyed it...as long as I kept her hands away from the technician (the nurse got her hand too close to Addison's mouth, and Addison latched on and started eating her hand...)
After that appointment (hours later) was finally over, we trooped downstairs to the lab to get Addison's blood drawn to do all of her six month tests- including re-checking to make sure her transient leukemia hasn't developed into real leukemia. That always stresses me out. We had to sit and wait forever, too. Of course Addison fell asleep while we were waiting...


Being woken up by a needle pricking your foot is never a good thing, but Addison surprised me. She was such a trooper. She didn't even cry. She made a couple of faces, but just snuggled down into my arms and gripped my finger. What a big girl!

From there, we rushed home and got home just in time to take a quick bath (the echo gels are so messy, I wait until afterward to bathe her and she was stinkier than I had anticipated so we just couldn't put that off any longer). As soon as bath time was over, Addison's OT arrived for her appointment. It was a really great appointment....except for the fact that she (Tracy, the OT) said that she was moving out of state this weekend and this was her very last appointment with us!
So Sad! Tracy played a big part in helping us get rid of the Mic-Key button so fast, and I really liked her! )-:

From there, I tried to take a nap, but found that I was too stressed out to relax, so I cut out coupons while Addison napped and we hit the grocery store and saved $125.79 (spending less, our goal each time), which was a wonderful feeling, but so much work! Addison, once again, was an angel. As soon as we hit the first aisle and I pulled out my coupons, she took one look and fell fast asleep and didn't wake up until we got home. She is such a good shopper (knock on wood). It is such a wonderful feeling leaving the grocery store with a car full of stuff, knowing that the grocery store paid you to take most of it away. But again- exhausting. We ran home and I taught a clarinet lesson and then here we are- trying to unwind. Sigh. What a day.

Now we just wait to hear back from the leukemia test and when Addison's next heart surgery will be. I think I should have taken that nap....at points today I felt as though a stroke wasn't too far off. Some days are just harder than others.

5 comments:

  1. I wanted to thank you for your comment on our blog. We'll be saying prayers for your beautiful Addison as well! Really this sounds like an exhausting day.

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  2. :) we love addison and we know she will do just great with her next surgery! every appointment is getting you a little closer to life without oxygen cords and cardiologist appointments :). we will be thinking of you guys! and saying prayers for you! good luck!

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  3. She just looks so cute sleeping in her car seat! That must have been a looong day! Thats a lot to take in all at once. I hope Addisons tests come back good, sorry to hear she will need another surgery...thinking of you!

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  4. I am praying for Addison, Deanna! She looks like she did wonderfully during her appointment-very cooperative! I know that this must be very difficult for you and Aaron to have to see your little Chubbs face another surgery along with the other concerns. I will keep you in prayer!

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  5. Wow, you all had such a busy day. Sorry no luck with getting the O2 off. Trusting the blood work will come back good. Hate that another heart surgery seems to be coming too. I know the Lord will go with you all and get you through. You are such a trooper too along with Addison. So enjoy hearing about your days the good and maybe the not quite as good ones too. Blessings to you. Your family is precious and inspiring. Your Addison is adorable.

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