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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

Wednesday-O.R. Day

Well-today was quite the day. To begin with we didn't know what was going to be the outcome and we were more nervous than anything. We had to check Tacori in at 10am into same day surgery for an O.R. time at 12pm. Adam and I were able to walk her down to the induction room until they administered the anesthia to put her under. I cried yesterday when they did this for her CT and I "thought" I would be stronger if Adam walked and held her till she knocked out-but-I was wrong. I was taking pics while we were just walking towards her room and started crying-agghh. It took about a minute of them administering gas before she went out but we couldn't tell because her eyes stayed wide open-weird.
After about an hour, the airodigestive team came out to meet with us in a "Quiet Room." They ganged up on T first and then us. We met with everyone that was in the O.R. (maybe 10 different staff members from pulmonology, ENT and Gastrointestinal)Dr. Wood said -so far- he is okay with the development of her lungs and didn't see anything that really stuck out. He believes most of her illnesses are related to Lauryn being in preschool. Dr. Wood also sprayed sterile sea salt on her lungs so they could wash away any abnormal bacteria that may be growing so he stated he will reserve his final judgement until next week when the final culture results of these washings come in. The lungs need to be strong enough before the reconstruction can be done because there is a chance she will need to be on a breathing machine for awhile and we need to make sure her lungs will be able to tolerate it for infection processes and also the breathing machine tends to cause a little damage to the lung tissue.
Dr. Putnam (stomach doc) was there to see if there was any obvious stomach issues going on and then to insert a impedence probe that is inserted in her nose on down to her stomach and is hooked up to a machine that measures the acid in every little hiccup, cough or sneeze while she if fed over the next 24hrs. This will (God willing)stay in overnight and the final results will also come back next week. She is already on prevacid and if the acid comes back too high he will adjust the dosage. The acid plays a big role when it comes time to reconstruct because the acid could come up during a burp, etc. and that will destroy the rib graft they will be placing in her airway to widen it. We want to move forward in confidence so we will never have to look back.
Dr. Cotton (the MAN)came in last and said eventually she will need to have the rib graft placed anteriorly right underneath her vocal cords in two different surgical stages. We will know a timeline come next wednesday or thursday once all results are final and they come together as one to decide which path we are to take next. Dr. Cotton came in with confidence and basically reassured us we are in pediatric airway heaven and this is something he sees on a regular basis. AND THE BEST PART THAT MADE THIS WHOLE TRIP WORTH IT IS HE MENTIONED THAT SHE WILL BE ABLE TO TALK. For those of you that know T's history-we were told that there is a good chance that she will never be able to talk. Dr. Cotton said she would probably be hoarse but she will be able to communicate!! And like I told him I don't care if she says "MA" and it means "MILK"-I will take it. So we are here in the hospital camping out with T. SO this last pic I posted is T after OR in our room and still smiling. She's our champ! Tomorrow they will remove the impedence probe, she has some more scoping and speech appts and then we are hopefully outta here.

GOAT CHEEEEZE!

It was time for Dinner so we decided to head up to a the restaraunt here in the hotel. Its called RiverView 360. It revolves around similar to the one on top of the Stratosphere in Vegas. You can see a good part of Kentucky, Cincinnati, and Indiana. Great food too! We decided to go all out since tomorrow and Thursday will consist of cafeteria de la hospital. T did sooooo well and was such a happy girl to be out of those hospital rooms. She found a new love for GOAT CHEEZE! She loves it so much she couldn't get enough of it. After dinner, we were fat, happy and ready for bed. Tomorrow is our big surgery day! We are almost have ways done and closer to being home. We are all missing our Lauryn like crazy but we know she is having a good ol' time back home with her grammy, auntie, and cousins.