Wednesday, March 24, 2010

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.

Tuesday, March 23, 2010

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.

Tuesday Afternoon


This afternoon consisted of another consult with our docs who will be gangin up on Tacori in the O.R. tomorrow. Dr. Woods(pulmonologist), Dr.Cotton(ENT), Dr. Putnam(Gastroenterologist)Tacori started out very calm. We met the docs except for Dr. Cotton along with their nurse practioners. Our appt start at 1p and was over till close to 6p. They were great. Answered all of our questions and then some, explained the procedures in the O.R. for tomorrow and made us feel good about coming all the way out here for second opinions. Dr. Wood did show us the results of the CT scan and their is some scar tissue, some abnormalities of her lungs but said he will take a closer look at all of the areas via a scope tomorrow to give us more detail. But overall they are pleased with her development and said for being a 22-23 week micropreemie her lungs look okay. After all consults were done you could tell T was ready to clothesline the next person who walked through the door she was over it and told her Daddy in this pic he was to take her to a real nice dinner.

Tuesday Morning

?
We had to be at Radiology first thing-check in by 9am. Our poor bumpkin has been on pedialyte since about 4am. She won't be able to eat anything till after her CT scan of her lungs/chest which could be late this afternoon once the anesthesia wears off. A CT is basically a high resolution picture that can be cut like slices of bread for our pulmonologist Dr. Wood to evaluate every lil' crevice of her lungs and be able to determine just how good/bad they really are. We do know that being on the breathing tube birth til 4mo of age could've did some major damage along with her being a micropreemie too. Dr. Wood is text book material and is the top dog of the nation so we are sure to get some answers.
Once we were taken back we had an awesome nurse that Tacori just adored. She explained the whole procedure and how they were going to give Tacori a breathable gas through her trach and she would fall asleep for the procedure. We proceeded to take T to the Scan room, sat her down and immediately the anesthesiologist administered the gas and once her binky dropped we knew she was out-and then we cried, kissed her and had to leave the room. Who knows how we are going to handle surgery day????
We were called back about 30minutes later and Tacori had pulled some heart strings as she always does, was surrounded by nurses playing with her and she was just eatin it up. We love our girls!!!

Monday

I can't believe I missed a day of blogging already. Guess we'll blame it on this time difference (3hours ahead of good ol' California)

Let me revisit Monday for you. Monday-other than jetlag was an easy one for the most part. We only had to show up at Children's Hospital for an anesthesia consult. Dr. Mohammud was very, very nice. Actually everyone was.
Here is our Tacori-still sleepy but ready to meet her anethesiologist.

The rest of the day consisted of eating, sleeping and snacking. I know, I know-not good. Chili (beans) are very popular out here but they don't compare to my mom's or my auntie Birds. Here in Kentucky (which is where the Radisson is located)they have 2 fast food chains Gold Star CHili and Skyline Chili both are local fav's. Every menu we see has chili. Chili spaghetti, chili nachos, pictures of chili dogs,etc. White Castles are also another local fav-they have Burger Kings but one resident said BK is a no-no when you have White Castle round the corner. Adam is ready for some WC sliders. Maybe Thursday after our discharge from the hospital. Their lingo is also quite different. We have to listen in closely because they talk real fast and then have to double think everything. For example, they say cycle but it sounds like sickle and it means motorcycle. We are adjusting. It's sort of neat.

Sunday, March 21, 2010

Hello Cincinnati


We made it and we are exhausted! Tacori is having a bit of culture shock being away from home and we are trying to get her adjusted but it is not so easy. She wants her big girl crib not this mini one here at the Radisson. She only wants to play in it-not sleep. But she is loving the big fluffy pillows on our bed. I want to post these pics of our new home for a week...So until tomorrow

And...We're OFF!

Today was the morning of our big trip to Cincinnati for our second opinion on the decannulation of Tacori's trach. The local docs want to remove it when she is 3-4 years of age and hopefully since the Children's Hospital in Cincinnati will have different plans. Guess we'll see come Thursday. We have our whole week full of doctor appts with different specialists and I will keep you in the loop as the week unfolds. We were pretty nervous about flying 6hrs on 2different flights with Tacori, her trach and tons of equipment/supplies but as you can tell here...didn't bother her a bit on the first flight.


She did so well on our first flight by snoozing the whole way but things got a bit tricky come the second flight because she was in some desperated need of entertainment. We brought books, snacks, water, toys and lots of energy but what did she fall in love with????
yep! A cup.

So cool!

This was sooo cool.

We had sooo much to still do two nights before we were about to fly our to Cincinnati that we opted for a quick dinner and ordered in Chinese food. After dinner Adam got Tacori ready for bed and I got Lauryn ready for bed (some nights she can't sleep without rubbing my ear while dozing off). After all was said and done Lauryn ended up putting me to sleep and my poor hubby had dessert (fortune cookies) all by his lonesome. Needless to say, the next morning I had to work so while waiting for an inservice to begin I decided to go through my purse and to my surprise there was something too cool that I found...

Yep. It was one of the two fortunes he had opened for us that evening and decided to surprise me by placing it in my purse rather than waking me. We both have been a bit nervous about this trip but this was neat. What are the odds?

Friday, March 19, 2010

Tacori's Birthday

After being discharged from Clovis Community Hospital, the next day consisted of bedrest. Per nursing instructions, if you don't have MORE than 4 contractions per hour-don't worry about it. Apparently, the antibiotics can cause "false" contractions. Well, I had consistent contractions 3-4 per hour and...tried not to worry. Come 24hours later I went to the restroom and *bam* there went my mucous plug and I was hemorraging everywhere and was in full blown labor. I was a mess and immediately we were off to the hospital. I was full of emotions and my husband became my strength-even though I know he was just as confused and scared as I was, he remained calm, cool and concerned. I arrived .to the hospital within 15minutes of losing the mucous plug and they got me into a room, checked my cervix and I had already dilated to a 6. The doctor told me little to nothing of what to expect. The only thing she mentioned was my waterbag was still intact, her heart is still beating and if you could get through the weekend-that would be ideal-if we could get your bleeding under control. I was immediately placed on magnesium (which was one of my roughest ventures in my life). It basically takes away all your strength so your body isn't strong enough to give good contractions that labor needs to advance. But it comes with horrid side effects that I could never wish on anyone. They gave me trobuteline to also help stop the contractions and a steroid to help speed up the development of the baby's lungs (in case she were to survive the birthing process) Within a day, I couldn't see, nor feed myself, nor move myself and was only allowed a very small amount of fluid to help prevent pnuemonia. When I say small- I mean it. Maybe 15cc/3-4hrs. Therefore I became dehydrated and needless to say I became a pin cushion-they had to closely monitor my levels since I was the patient and the baby-well, wasn't even a factor at this point. My veins had little to no fluid and they were unsuccessfully attempting to draw blood every 2-3hrs-I had no choice but to recieve a PICC line. I held in there for as long as i could which turned out to be only 3 days-:( We received overwhelming support through visits, prayers and caring thoughts from family and friends. But the best support we endured was hearing the monitoring of her heartbeat. It was strong, really strong since the day of admit. Nevertheless, she decided to come crashing into this world December 30th, 2008 weighing it at a whopping 20oz (580gms or 580paperclips) (1lb 4oz). Immediately she was wisked away to Children's Hospital Central California. She was a fighter from the getgo and the next 5months were some of the hardest days to swallow. Everyday she made it was a blessing. We ended up with normal preemie stuff such as desatting, a heart surgery PDA closure, ventilation, Bronchopulmonary dysplasia (BPD), chronic lung disease, infections after infections, self extubations and then the need for a tracheostomy and later a gtube for feedings due to feeding issues. There were many more but even though the odds were against us--a year later we feel like somehow someway we continue to fight them off as a strong and loving family.