Most Recent O pictures!

WARNING: O pictures below! You might not want to look at them if you get queasy easily!


This is Fiona's belly about a month ago (so 2 months post 3rd surgery). The open areas are the Gortex patch underneath. Like I have said, it doesn't cause a problem that it is exposed, we were just really hoping for it to stay closed this time. We (well we meaning me!) are changing the dressing once a day. I put wound get on it a couple times a week. That stuff just makes a mess and gets crusty and sticks to the patch, but I do think it helps skin growth so that's why I am still using it sometimes. I then put a non-adhering dressing on so that the top layer doesn't stick directly to her belly. Then I either put just 4x4 pieces of gauze on top and tape them down or 1 piece of gauze and a piece of Duoderm adhering dressing (this stuff is water proof and is what we put on when she is going swimming, but it also sticks better than the tape so sometimes I use it on other days too). She has had Pseudomonas twice since the last surgery, but it doesn't cause any major problems and easily goes away with the acetic acid treatments. Her belly is now even more open than it is in this picture so I will have to take a new one soon. I just discovered last night that the patch on the one side isn't even connected to anything anymore and that skin has grown underneath it!

Where have we been?!

I can't believe it has been so long since my last post! And I don't have much time because it is almost time for OT, so here is a quick summary!

It has been SO hot here. I don't know what we would do without our airconditioners. Funny story (ok funny now, not at the time)... the other morning I was trying to close the top window (we have really old window and they suck and don't stay up) and the damn air conditioner fell out the window. So we had to go buy a new one, got it put in, it worked for 3 hours and then quit. Stupid Walmart. So we had to buy another one.

Anyway, Fiona is doing pretty good. We can't seem to go more than a couple days without a trach infection, if it even goes away at all. The poor thing has been coughing so much and coughing inevitably leads to throwing up. I am so sick of cleaning up puke 5 or 6 times a day. And it's not just a little mouthful. Usually it is projectile-puke-up-everything-I-just-ate puke.

We are still having lots of eating issues. No one can figure out why she gags like she does. It's so frustrating trying to get her to eat anything.

Developmentally she is doing great though! I'm not sure how she is gaining any weight with as much as she throws up, but she is up to 16.5 lbs now! She is walking all around the house. I still can't just leave her be because she is still a little unsteady. We are working on pulling up onto things and getting up off the floor. Her PT told me that I need to let her play and explore on her own more, but it is hard when you are used to being right there for so long! And she is still very, very clingy. She is up to about 40 signs! And putting 2 together ("open, please" or "daddy, work" or "Zeus, bad" haha). She LOVES to swim! It makes me a bit nervous because we already had one water in the trach incident, but everyone knows to be very careful when she is in the pool.

We are down to only having nursing 2 nights a week so I don't get much sleep, but it's kind of nice not to have people here! She sees ENT on Aug 2nd and we are really really hoping that he says she's ready to decannulate! Keep your fingers crossed! She also sees her surgeon that day and we will probably get a date for her next surgery.

I will try to add some new pictures soon!