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Pneumonia and a Virus

Our Poor lil T is sick again and back in the hospital. She was sick a couple of weeks ago, placed on Bactrim for 14 days and seemed to be turning around until last Saturday when she spiked a horrific fever that was almost too tough to break. We took her back to Pulmonology for a f/u and they choose to admit her. She has been there since Tuesday and now requiring oxygen:( They did an xray and said once again she has a pnuemonia (unknown of whether it is viral or bacterial) so they decided to place her on 2 antibiotics and see what that will do. They think she needs an increase in her diruetic to help release some of the fluid on her lungs. On top of everything else, she tested positive for a influenza virus. With this illness and O2 requirement, Cincinnati is unsure if the want to pursue the decannulation this July since her lungs took quite the toll this time around. So--we'll see....

Kids say and do the CUTEST things

Too cute! Lets start with Lauryn... She loves playing with T, no matter how baby-ish it may be. She is all game when it comes to Tacori. As you may know, with a trach we are unable to hear sound out of Tacori. That does not matter to Lauryn. She holds full blown conversations with T and T can definitely get her point across too.

So-the other day Lauryn and Tacori were "talking", Lauryn turned to us and said "Wow-when Tacori and I were "talking"- I saw inside Tacori's mouth and I told her that she has 2 teefers on da bottom and whole lots of toofers up top!"
Toofers and teefers never sounded soooo cute.

As for the beast, Tacori...Well, she will only pay you mind when she wants too. She was ignoring us one evening paying only attention to toys, so I decided to take advantage of her sassiness and read a book with Lauryn instead. Lauryn was in her PJ's winding down before bedtime, so we cuddled up on the couch. While reading, Lauryn let out a "AAAGGGGHHH, WAAAAAAAAHH!" I looked down and there was the beast with all of Lauryn's toes in her mouth-LOCKED JAW!!
Lauryn took it like a CHAMP! She screamed and cried but didn't move for the toofers and teefers sake.

Do you know either of these two little ladies? Well, once you can figure out who they are-they want to wish you a very HOPPY EASTER!!!

Back to the Bloggin Board

I have not been very good over the past week about blogging and I am sorry. I know an amazing mom/blogger named Rebecca who warned me blogging would consume my life and that is definitely coming true. Even though I may have not been blogging for the past week-I must admit I do feel guilty because I am constantly thinking about it. I also feel like I am "cheating" in a way for not blogging and not staying true to my site. Since we have been home it has been fun being a family again. T cried and cried when she first saw Lauryn. We think this is how she is telling us or that person that she missed them-tremendously. Then once T saw her Nurse Irene- she cried even harder. Probably telling Irene that she truly missed her and all about the rough week she had. I must say, they have quite the bond.
Anyhow- let me catch up by wrapping up last weeks visit at Cincinnatti Childrens.

After OR, we stayed in the PICU room overnight because as you may recall T had an impedence probe placed through her nose into her stomach and that was hooked up to a box and we had to insert data about T through the night. This was to be studied and the results would eventually tell us how strong the acid levels were in her tummy and if her reflux is under control or not. It is now Friday and the doctor who reads this particular study is conveniently on vacation so we still have no results.

After discharge the next morning we headed straight for the Speech Dept. Here Adam sat on a chair with T and gave her a great big bear hug while a doctor inserted another scope through her nose to watch her vocal cord movement via the camera. While this scope was inserted our goal was to get Tacori to swallow food/formula with green food coloring to see if she was aspirating. As you could imagine-she hated it.
After studying the data and pics taken, they did like her coordination of vocal cords and her swallowing functions. They didnt see any aspirating which is good news since that too could be harmful before and after reconstruction. So then we were off to the airport and homebound we headed. Now we sit patiently and wait for the docs to review everything and then wait for our plan. Since we've been home, we have had lots of cuddle time and things are back to norm