Warning: This is a VERY long post with no pictures.
1. Abby went to ENT on Tuesday for a follow-up now that she has been off of the vent for a month. He put a cap on her trach so that she would be forced to breathe out of her mouth and nose. We're building up tolerance, but she does great with it and doesn't seem to notice any changes at all. Right now, we're following guidelines to cap her 3x a day and increase by 15 minutes each day. By the time we come back from vacation, Abby should be capped pretty much all day!!!
I will call while we're on vacation to schedule a sleep study. If that looks grrrrrreat, our ENT will check her airway under anesthesia one more time, admit her to the PICU, then take the trach out!!! She'll stay inpatient for a few days under observation, but for awesome reasons! If the sleep study doesn't look so wonderful, then we will move forward with the jaw surgery.
The thought that Abby could have her trach out in September is amazing to me. Absolutely amazing. I'm not getting my hopes up at all, because I know how things can change. Just the thought of it is pretty awesome though! She has come such a long way. This time last year, we were doing vent trials!
2. Abby has really turned a corner on the eating. She is now eating 2 ounces of purees pretty consistently 3x a day, with an ounce of Boost (like Pediasure) at each meal. She also eats a snack and a dessert, for a total of 5 meals a day! We're able to get between 9-11 ounces of food in her a day, which is awesome, considering that she was just cleared to do any of this at the end of May! Chewing is going to be hard for Abby. We know that, and our therapist is ready to start addressing that more strategically when we get back from vacation. (Making big food changes when you are out of your routine isn't a good idea!)
It's really important that the food Abby eats be high calorie so that she replaces the tube feed she is missing. That may sound like a great problem to have, but I can't just give her ice cream and cookies all day long. Most fruits and vegetables are very low calorie (which is why Weight Watchers lets you eat them!), which means I have to bulk up whatever Abby eats. I've been experimenting with different types of health food mix-ins to see which ones Abby will tolerate. Texture is still an issue for her, which makes some of the mix-ins a no-no. She really likes this Super Fruit smoothie mix that adds 20 calories with just a teaspoon and is chocked full of antioxidants! Unfortunately, it is $31.99 a Whole Foods for an 8 oz bag! I was so excited when I found it online for just $11.99!!! She will also tolerate Flaxseed, although it is not her favorite. It has lots of Omega 3s, so I really want her to eat it. I pretty much mix it in everything, so she is getting used to it. I've tried Chia seeds as well, but it turns all of the food to a glue-like substance. I can't stand to look at it, and Abby refuses to even consider putting it in her mouth. Thankfully, it is pretty cheap, so I don't mind that it's going to waste. Chia seeds, anyone? In any given ounce of food, it may have heavy whipping cream, butter, Flaxseed, Superfruits, or Chia seeds added to it! I can turn a 15 calorie ounce of banana into 105 calories. Just call me the Paula Deen of feeding therapy. :)
3. Abby is officially in her big girl bed and loving it! She has done great with the transition and I'm even back to hooking up her feeds when I put her to bed. She is really good and absolutely loves her bed! When Matt put it together, she climbed in with a I'm hot stuff! grin. Caleb climbed in and she pushed him out with a fierce, "No! Mine!" Sassy, sassy girl!
4. We are going on vacation--just the four of us!!!--and my blog will be taking a vacation too. Don't expect to see too much for a while, but I promise that there will be loads of pictures of cute kids when we get back!
5. With the prospect of decannulation comes a new and wonderful problem...childcare for Abby! I don't want to actively search too hard when we aren't sure that we will need it this fall, but I also don't want to be caught off guard with no one to take her. We're hoping to move all of her gtube feeds to nighttime so that the gtube will just be there. The provider will have to learn how to put it back in, in case of emergency, but that's about it. The biggest issue would just be following the feeding protocol.
The other side of this is that it would be a part-time, flex schedule week-to-week. My work schedule is constantly changing because of meetings at work and Abby's appointments, so I can't say that I always work these days and hours. Plus, Matt is off on Mondays and Abby will be in a preschool program on Fridays. It's really Tuesday, Wednesday, and Thursday where we would be in need, but not even every week. I'm pretty sure finding someone who would be that flexible will be impossible. If you know of anyone, please let us know!! :) Like I said, this is a really good problem to have. We just need to start planning for it now!
7. We have only suctioned Abby ONCE in the last month. This is HUGE. Some kids get suctioned 20+ times a day. Talk about a big step toward getting the trach out!!!!
I might be able to get one more post in before we head out for our vacation....we'll see what tomorrow brings and how long it takes me to put together the organizational unit for Caleb's closet! Tonight's attempt consisted of me taking the pieces out of the box and a piece of wood dropping on my ankle/foot. I now have a huge bruise. Not a great start, but tomorrow is a new day.