I mentioned in the last post about Fiona having to get another trach culture done. Well it came back positive for Pseudomonas (which is what she had on her belly that one time!), Streptococcus, and yeast. She was already on drops and an antibiotic and those seem to have taken care of the problem. Let's hope she doesn't start a cough again.
We are also having some issues with her belly. I posted the pictures of how the incision was coming open. Well now the other side of her belly is coming open. It started as very dry, flaky skin and we thought for sure it was a blister. Then it started to change colors and looked almost like a bruise. Then one morning it started to ooze and broke open. Not a blister though. It is where the Gortex patch is sewn underneath her skin. So every day that area opens up more and more. Soon I think most of the skin in the middle of her belly will be gone. Ugh. It's nothing horrible. We are just doing what we had been doing before with her dressing and everything. It's just that this time we weren't SUPPOSED to have to do that. And I was so looking forward to that. (I will try to post some pictures later)
On to some good news. Since the weather has been nice here, Fiona and I have been getting out of the house alot! Even if it's just out on the deck, it's so much more that we did last year. It's not even summer and I'm pretty sure that we have been out of the house more in the past 2 weeks than we were all last summer! She LOVES to swing and signs swing all day long (side-tracking, she is getting awesome at signing) and then gets mad at me if we can't go out if it's raining or too cold. I also bought her a water table for out on the deck and she loves playing with that too. We have had some exciting "firsts" in the past couple weeks also. She went to the park for the first time. And today was her first time swimming (we did have one little incident where she got a little water in her trach :/). But overall she is doing great! (She was 18 months on the 20th and is now 15 lbs 8 oz!)
So even when I think that things are bad I have to kick myself for forget for a second how lucky we are. Lucky to have such a beautiful, smart, happy little girl. I have met some amazing people in the past 18 months. They and their kids have taught me (even more that I already knew) not to take ANYTHING for granted. We are lucky that she can walk. Lucky that she can see and hear. That she can breathe on her own and doesn't need oxygen. That she is relatively healthy and home with us and not in the hospital. Even that she can pee and poop on her own! And most of all, we are lucky that she is here with us! So when you think you have it rough, just remember to never take anything for granted, even the small stuff :)
It is so true. you guys have been through a lot and so has Fiona but what a blessing she is. As her great aunt, I sometimes feel sad with everything she has gone through, is going through and will have to go through. Then I realize that she is able to go through that with loving parents and very talented doctors and is being watched over. All anyone has to do is see that beautiful smile, watch her sign and even see her stomp her little foot to see the blessing she is. Lots of love to you.
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