Update on the scope (actually called a Bronchoscopy and Laryngoscopy!): It went really well. Except for the fact that we had to be there at 7 am, haha! We had to leave our house at 4 am. Poor Tom (he drove)! Anyway, we got there at about 6:40 and were taken right back to the recovery room since she is on a ventilator, so we didn't have to wait in the waiting room. They came to get her at about 8 and Tom and I went to the waiting room. About 15 mintues later the Dr. came to talk to us and she was done already! We had to wait about another 10 minutes for her to wake up and then we went back to get her. They actually ended up not even putting her to sleep. They just gave her some pain medicine to make her a little sleepy. Dr. Mehta (her ENT) said that everything looks good. There were a couple of things that he explained to us. He saw a very small piece of her left lung was collapsed, and her airway braches of into her lungs at a spot that it is not supposed to, but that neither thing was anything to worry about. He also had to remove a small amount of granulation tissue which is a very common thing. Overall it went really well and we got some crazy looking pictures of her airway and voice box and vocal chords, haha!
Since then we have been having lots of trouble with throwing up. We also have been having to suction her more. We have no explanation for either thing and are just trying to figure out what's going on. We thought maybe it had to do with the scope, but the Dr. said it shouldn't. We think the throwing up is partly because she is getting more air (because we are making her bottles so thick with cereal for the extra calories we can't use the insert that prevents her from getting so much air). She probably has to burp, but it is so hard to burp her. Most of the time she doesn't burp for a couple hours after she eats and then sometimes still throws up, so who knows. It also may have something to do with her O being wrapped with the ace bandage. I'm sure if my stomach was being squeezed I would throw up too!
It is so neat to see her growing developmentally! She loves when people clap for her and when you make her clap, but she can't quite do it herself yet. She started bouncing up and down while she is sitting and it looks like she is dancing. We have started using signs when we talk to her. Mostly mommy and daddy and bottle. I can't wait until she can start doing them! She loves to grab her feet and legs and has started putting her feet in her mouth! We are still really working on putting weight on her legs and working towards getting her to sit up on her own. We have been trying to get her to eat solids, but she doesn't like them! She does ok with tiny little tastes, but won't actually take a whole bite.
Her O is FINALLY ALL SKIN!! YAY!!
Our next appointment is next Tuesday (August 3) with Surgery, Pulmonology, and ENT. Her surgeon will decide if she is ready for surgery yet. And hopefully Pulmonology will turn down a setting on her ventilator!
One of our attempts at cereal! More on her face than in her belly haha!
First day at home that we had her belly wrapped with the ace bandages!
Well we had a LONG day in Pittsburgh on Tuesday. First we saw Urology - for her kidney reflux (VUR). Even though we had to wait 1 1/2 hrs for a 10 min appointment (UGH!) it was a good appointment. They did an ultrasound of her kidneys. She still has the reflux - grade 3 (out of 5) in both kidneys. But they say that it still has a really good chance of fixing itself which is awesome! Even if it doesn't ever fix itself they don't usually so surgery unless it causes reoccurring kidney infections and Fiona has never had one of those *knock on wood*.
Next we saw Pulmonology and ENT (they do a joint "Airway Clinic"). They did a scope down her trach and said everything looks really good. They are always amazed at how good she is doing! They turned her rate down again from 22 to 20. We got rid of one of her medicines! Yay for no more Sodium Chloride! And she is getting her Albuterol (one of her breathing treatments) every 8 hours now instead of every 6. The Pulmonary Dieticians are the ones who decide how much she needs to eat based on how many calories she needs for her weight. Apparently they didn't think she was getting enough calories so now we have to bump up how much we are feeding her. She is supposed to be taking 95 mL at every feeding - which is a little over 3 ounces. Yeah, try telling her that. Sometimes she will take more than that, but sometimes less, so we are just doing what we can.
After that we saw her Surgeon. We love him by the way! And I think he loves her, haha! He always tells us like 5 times how great she looks! Well he poked around at her O like he usually does and then decided that he wanted us to start wrapping it with an ace bandage. We knew that was coming eventually, but didn't realize it would be then! So he went and got some and wrapped it. I guess the purpose of doing this is not really to push anything back in, he will be doing that when he does her surgeries to remove skin. The purpose of us wrapping it is to create pressure in her abdominal cavity so that it starts to expand and make some room in there for when she does have surgery. And speaking of surgery he thinks that he might want to do the first one at the end of August! I am both excited and terrified. I am excited that this whole process of making her better will be starting. But terrified because my baby is going to be getting surgery, and lots of them.
New things in our everyday life: Fiona started sucking her thumb and even though I probably shouldn't be letting her, it is SO cute! We have been trying to get her to eat cereal from a spoon, with not much luck. She started "running" like crazy! You should see those little legs go! And she also started whipping things back and forth, like her rings and teddy bear and it can get kind of wicked! Oh and I just quit my job tonight so that I can be a full time stay at home mom!
If I don't update before Friday (the 9th) please remember to say a little prayer for her. She will be getting a scope of her trach done in the OR and will be getting put out for it. It is nothing major, just a check, but still potentially dangerous. Thanks :)