Look How Far She's Come...

Look How Far She's Come...
11.20.09 3 lbs. 3 oz. 16 in.

Monday, May 30, 2011

It's Always Something...

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 :)

Friday, May 13, 2011

New O Pictures

These were taken the night before her 3rd surgery (in the hotel room!) with the dressing on.

This was a few hours after surgery.

This was 3 days post surgery (the incision was still nicely closed up).

These wer taken last night (1 month post surgery). The incision has opened at the very top and 2 places towards the bottom. The greenish part is the Gortex patch. The left part (well her right side) is very dry and flaky and we're not really sure why. We're hoping it's not a big blister because that would really suck!

Picture time!

And the story continues....

So remember how I said that after this past surgery we would not have to do belly dressings anymore? Yeah, so much for that. The Monday after her surgery at about 3 am she woke up crying so I went to give her a bottle and saw that she was SOAKED. I thought she had peed out of her diaper, but then realized it was coming from her belly. I got her out of her crib and layed her on my bed and there was GOOP everywhere. Her incision was draining. So I called the surgeon on call at CHP and we ended up taking her to our local ER at 4 am. They did a wound culture and he said everything looked ok. There were no signs or symptoms of an infection so to just keep in covered and call her surgeon in the morning. Just our luck, her surgeon has been on vacation this week. By Tuesday evening the incision had started to pull apart and we could see Gortex underneath (same as last time, except this time it wasn't SUPPOSED to happen). By Thursday morning a spot had opened up where there was no Gortex underneath and it was just her tissue popping through (BTW, by this point I had called Children's 3 different times). So I called again and that Friday we made a semi-emergency trip to Pittsburgh. The surgeon that we saw said it looks OK and we just have to be very careful that it doesn't get infected. We have to watch the bottom part that is just her tissue to make sure no intestines are coming through. REALLY?! THAT IS JUST GREAT.

So then we saw her surgeon the next Thursday and he said everything was fine. He said it obviously wasn't the most ideal situation because we didn't want it to come back open, but that it was ok. We just have to dress it again. We are putting wound gel on it (the same stuff we used at the very beginning) and the open spots are starting to grow some new skin! YAY!

2 weeks ago we had to do a stool sample because we thought she had some blood in there. We never heard back from them so apparently it wasn't blood. We are guessing that it was her antibiotic that was making it a funny color.

This past Tuesday we had to take her to get another trach culture. She had been coughing alot. And with coughing always comes more puking. I didn't get the results (I forgot to call today!) but they put her back on the Ciprodex drops in her trach and Omnicef (antibiotic).

Our next appointments aren't until June. We have NO appointments in May!!! We see her surgeon and Cardiology on June 2nd and then we will be staying over because she has a bronchoscopy which is done in the OR on June 3rd. At her last appointment with her surgeon he brought up the idea of giving her a g-tube. Definitely not what we wanted to hear. He said if she could have gotten one before, that he would have been pushing for it a long time ago. I agree that an 18 month old should not weigh 14 lbs. 14.5 oz (which is what she weighed yesterday YAY!). But all of her therapists agree that her weight and eating (or lack of) is not affecting her development. She is starting to walk!!!! She took 35 steps the other day and it starting to let go of things to walk to me. She is also signing like crazy. She has about 15 signs. She started saying please and thank you, mommy, daddy, Fiona, Zeus, swing, sleep, and lots more! She saw herself in the mirror the other day and signed Fiona! She loves being outside and tells me when she wants to swing. And last night she told me that she wanted to go to sleep.

Hopefully I can update more than I have been lately :)