Tuesday, June 29, 2010

Back to the O.R.

Sorry. i thought this posted but instead i saved it as a draft...

Well, today was another step towards eventual decannualation!! I even got a picture of Miss T and the M-A-N Dr. Robin Cotton before the surgery! I felt honored to have him cuddle our T as she was screaming for a quick pic. It was like he was a celebrity holding our baby girl. He even sat down and told me a story of a picture and letter he recently rec'd of a boy he didn't recognize until he read the letter> it was of a boy who was graduating college 22yrs after he had his trachea reconstructed.

So,Back to the O.R. we went for the stent removal on Tues.They also told me it would be a couple of hours but it took about 45 minutes. Dr. Cotton's fellow (rt hand man)came into to the quiet room to discuss what took place. They did make an incision through the neck, released the sutures to the stent and out of the mouth it came. Pictures were next. Whenever pictures are involved I just shake my head and listen to words because airway pics are soooo confusing.

All in all, he said itlooked as it should at this point. They will know and do more next week during her next scope. Her trachea is accepting the rib graft and is starting to fuse together. Also the rib is in the beginning stages of growing cilia (which are the tiny hairs in a normal nose and throat that act as a filter). She is now on what they call QUAD therapy. 1st therapy is Decadron a steroid to help to strengthen her lungs and the new airway. 2nd therapy is Ciprodex which are drops they place in her trach, then cover the trach so she coughs and gags which allows those drops to swish up and down her airway and they are supposed to suppress or burn some of the granulation tissue before it gets too bad. 3rd therapy is Bactrim which is an antibiotic that she has and will be on for a total of 21 days to prevent infection. 4th therapy is a higher dose of Prevacid to help minimize the acidity in her tummy in case she vomits. Without the prevacid, the acid in her tummy would eat away at the rib graft if she were to vomit. so until next wk...

Sunday, June 27, 2010

Countdown...

For the most part, T's feeling back to herself. She has learned how to swallow and take small bites of food even with the stent in place. But, we have started the countdown for the next surgery which is Tuesday the 29th.

After the last surgery, we have to deal with major drool, increased secretions, and major gagging and vomiting episodes. I believe that is what we are to expect this time as well. Once again, she will have another gnarly incision on her neck to add to the two new ones as of the 14th. They will have to make an incision once again to release the sutures attached to the stent. Once released they will remove the stent through her mouth and do some dilation and web removal(scar removal) depending on what they see. It should take about 2-3 hrs and then on to recovery we go. She will be admitted to the hospital for a few days to (again) have to learn how to swallow again and eat all over. This cycle will continue for the long haul.

Speaking of the long haul and after much deliberation, Adam and Lauryn decided to be the ones to head back home. As a Mother, it is so hard to have to pick and choose where and when I will spending my time and with who. But, I couldn't imagine not being here for the next two surgeries and recoverieswith T. It is not easy to be away from my Lauryn and Daddy, but this is what was going to work best. we have decided that Adam will be the one to bring her back for the next couple of surgeries so I can concentrate on getting into the groove at work.

Tuesday, June 22, 2010

Newport Aquarium and a movie day

We had a great day here in Cincinnati. Got a late start but all in all it was definitely fun filled. We had some cabin fever due to the bad weather yesterday so we had to make up for it today. We headed out to a place called Newport on the Levee and there is soooo much to do there. We started out with a late lunch at a place called Brothers. Here is T, almost back to normal with all her smiles. And look she was tearing up a breadstick dipped in potato soup.



Then we walked down to the Newport Aquarium. Big thanks to the Ronald McDonald House who called in tickets for the family. It was awesome. The absolute best aquarium I have ever been to. You could even pet sharks!! So cool.

I love you Mr. Sea Turtle! You are the first thing I met that has eyes as big as me!


SHARKS! SHARKS! AND MORE SHARKS!!! (this one is for you JenJen)(she hates sharks)






Uh oh?? Which end of this turtle is up or down? (actually the tail is up and we are looking at his belly up)
Lauryn and Daddy feeding nectar to the birds in the Rain Forest



A whole house filled with Frogs and a jungle gym to boot! Fun!







This Sea Turtle looks like a Dinosaur and moves like one too! They loved eachother and he followed her wherever she went!

Then we topped it off with the Toy Story 3 movie. I can't tell you the last time Adam, myself and Lauryn went to the movies.this time it was even more special...T's very 1st movie and our very 1st movie as a family. Can you believe it?? What a milestone!! T was perfect! She watched about 20minutes, then took a snooze and woke up as it was finishing.

Monday, June 21, 2010

Stinky girl!

Stinky stinky girl finally gets a real bath-well, sort of. Due to the trach, we have never been able to pour a huge glass of water over her head, but we are hoping it is in her near future. Here are some pics of T getting bathed since surgery. I think she is confused that Irene (T's nurse) is not around. This is one of their all time favorite things to do together. Irene gives T a bath and T gives Irene a bath!!



Get me outta here!! I want to play!!!

Irene, where are you???

AWWW! Thanks Mom! I feel like a new woman

ALAS, meemees time:)



Oh-that is another thing we will touch on tomorrow. Adam is a foreigner! They are stunned to see a hispanic in town. He takes Lauryn to the playground and *POOF* everyone runs for cover! Haha! It's funny.

Lazy Day

Today was a lazy day for the Sotelo Family. We woke up around 10:30am and just hung out at the Ronald McDonald House due to the horrible thunderstorms and lighting. We even went outside to enjoy the lightshow around noon but it was about 90 degrees outside and humid-so we didn't stay outside for long. The weather around here is mind boggling.

The Doug Family came in this evening and cooked dinner for all 78 guests who are staying here in the house. It was yummy!! Adam and I talked about doing the same one day for the residents at our local Ronald McDonald House.

We met some amazing patients and wonderful families today. I met the sister of a bone marrow recipient. His name is Josh and he is 19 years old from Georgia. He received his transplant about 1 yr ago and has been admitted to Childrens hospital ever since. She and her sister are on vacation and came to stay with her mom who hasn't been home since Josh rec'd his transplant.

I met a girl who is 13 yrs old and I am not sure why she here but she did tell me she lives here permanently and has for the past 3 yrs. Apparently, there are round the clock nurses here to stay and care for her but no family. We were going to talk more at dinner but we missed paths.

Adam met a 5 yr old who rec'd a heart transplant and is doing well.

We also met a mom and her 8month old who were just moving in today. The baby girl is awaiting a liver transplant.

And guess what?? We even met an amazing family here from Bakersfield!!!! California! That's right, the west coast is ruling the Ronald McDonald House. Amy (mom) said her son Jacob, 9, was born with multiple internal midline issues in addition to a trach and gtube. He was being followed by Childrens in Madera, CA for multiple surgeries. He has alot of scar tissue causing him great abdominal pain from all of the surgical revisions that now the local docs (In madera) said they don't know what else they can do for him. So they decided to come here and get a 2nd opinion since she heard there were some of the best specialty surgeons here in Cincinnati.

Please continue to send healing thoughts and prayers. All will be greatly appreciated by the many families in great need.

Sunday, June 20, 2010

Happy Fathers Day!!

Happy Fathers Day!!! Two years in a row, both my husband and my dad have been "jipped" of a Fathers Day. We were hospitalized last year and this year we were also limited. So after calling my dad and making sure he got his care package from Cincinnati, we decided to get out of the "house" for a little while. The Cincinnati Zoo is literally within walking distance. Two blocks to be exact so we were off!
Since it was Daddy's day, I didn't think it would be as busy as some of our other options but turns out I was WRONG! Not only was it almost 100 degrees and humid, it was packed.

Mr. Turtle was on his own adventure. This zoo volunteers' job is to follow him around all day and make sure he doesn't get ran over by kids or strollers.

Manatee bubble... But...no manatees to be found.


These guys were up to NOOOO good, they were doing a mating call to the females acrosse the way. I didn't know monkeys could even make that much noise!!

T and L sooo confused by the monkeys mating call.

OOPS!


OOOPS! I forgot to update you on T's status. Well, as of Saturday, she would have been 5 days out from surgery and doing well. Trying to eat, learning to swallow again and also the docs did her first trach change on her new site. We are applying the antibiotic Bactroban on the areas where her drains we and continuing anbx for the next 12 days. Occasionally she will cough and gag due to the stent being in her trachea and this still seems to be very sore for her. But other than her uncomfortable coughs, battle wounds where the drains were and her covered incision site above her new trach--you wouldn't even have known she had surgery. Thank you for all the healing thoughts and prayers being sent this way!!!

Jet Lag

Well, we, the Sotelos are together again and loving it. Friday thru Saturday morning are a blur for me. I started out Friday at 0500 on a plane headed out to pick up our Lauryn in Fresno at 4pm then we jumped back on the next plane out towards Cincy. After 2 red eye flights, We arrived Saturday morning at 0930 in Kentucky, drove in to straight to Childrens hospital to pick up Miss T and Adam. The docs decided it would be okay for T to have a "local discharge" for a week before the next surgery for stent removal.

Lauryn has been hanging out with Grammy JoJo and Papa Danny causing trouble and fishing. She was also hanging out with her Auntie Bird, Cuzin JenJen, Bubba, and Richie. Let's face it...she loves hanging out with family and with all of them keeping little miss busy, she would have been fine for the next couple of weeks but WE missed her and wanted her to come out to Cincinnati for a vacation. When else will we have a week vacation together??

After discharge we headed for the Ronald McDonald house for a nap and ended our night by playing, eating dinner and playing some more. They have amazing play rooms and an outdoor play area. But... Lauryn has found a new love...FIREFLIES!!! They are too cool and give off a cool light show as the sun goes down.


Thursday, June 17, 2010

Cincinnati Childrens Hospital


Good ol' Cincinnati Childrens Hospital. It is about 10 times the size of the Childrens in Madera, CA. These are only 2 of about 10 pics I would have to take for you to see everything.

some pics


They can't take me on a plane if they don't know who I am. Maybe they will think I am a country star! Or...does my binky give me away???


AAAAAAAAAARRRRR!!!!!!Battle wounds!!




Uhhh-Daddy? Is this big white thing going to eat me??

70% better

72hours post and Tacori is about 70% better. We finally were able to get a room at the Ronald McDonald house so Adam and I are now taking shifts until we catch up on our ZZZZ's.
Last night was a toughy... so while Adam was sleeping, T and I were partying all...night...long!
8pm-new IV#1-the old one came out
midnight-new IV #2 since the anbiotic was leaking all over her bed
1230am-new bed change
1am-trach care since she made herself sick after the IV#2 was started
2am-Gtube popped out in its entirety-LOVELY!!! I smelled like sour milk til this AM
3am-Gtube was found leaking all over bedding. Thank you nurse Chelsea!
330am-sponge bath, bed change #2
4am-new nurse came on shift and had to do a whole new assessment-aggghhhh! Tacori traumatizedd thinking it was another new IV since the first thing she did was look at her IV
530am-RT(respiratory therapist) came in to wake Tacori gently and turned on all of the lights and took off bandages for docs to see at 6am
6am-docs came in and removed both drains(neck and ribcage)
630am-SLEEEEEEEEP! YAAAY!
715am-change of shift and new nurse came in to be sooo kind and introduce herself! Soooo sweeeeet!

So since both drains have been removed, Tacori has a little more comfort as she moves around. We are off the morphine and she seems to still be in pain mostly when she coughs but for the most part is cracking a couple of more smiles during the day. We have to work hard to get those smiles but they are so worth it.

The plan thus far is to have a trach change Saturday, back to the OR the 28th or 29th to remove her stent and back a week later to have a bronchoscopy with dilation and granulation removal. I will be flying home to get Lauryn tomorrow in the morning to bring her back for a week. I think Tacori will be pumped to see her and we hope this will help speed up her recovery.

Tuesday, June 15, 2010

36 hours post op

The first 12 hours of recovery were horrid. Initailly the docs were going to paralyze and sedate Tacori so she could heal from the inside out and not disturb the grafts, but now with a new trach, plans changed. They allowed her to wake up and it was sooooo hard to see her face. We felt so helpless. T was a mess, in tons of pain, had braces on both of her little arms to keep them from moving and a drain in her neck and another drain in her rib cage. We had a new trach, therefore, had tons of secretions to suction, not to mention they weren't mucousy, they were all blood. She was gagging and vomitting up the mucous. She has never really had an airway before, Adam and I were able to suction any mucous but now that she does have an airway and a trach, Tacori has to learn how to manage secretions out of both areas. She has been drooling for the most part but when she does try to swallow secretions she seems to be in great pain and gets nauseous. Not even the morphine helps very well.

We are 36 hours out and things are still rough but we are doing much better. All of us. Our tears are still there but we are camping out here in the room with her and she even cracked a smile (when she saw her binky) The next steps will be to remove the drains which may be Thursday and Saturday. Saturday the doctors will also come and do a trach change. And come then-- we will find out more . I will post pics tomorrow. I really didn't have the heart to post or even take any pics thus far. I would have cried tears in the camera and Adam wouldn't have been happy if I ruined the camera he got for me.

As for the big sis Lauryn, we all miss her dearly. That too, has only added to our tears. she is at home with my parents and with the help of the family is being kept busy. One of us may go home and get her so she could be here with us. We did do Skype this evening and once our Tacori saw her big sister Lauryn she started crying uncontrollably until she made herself sick. As for now, its time for some ZZZZZ's which we are in desperate need of.

Surgery Outcome

Okay... here we go. Now that we are 36hours post-op I can actually function and write. Had I blogged yesterday, I would have inserted*tear*tear*and more *tears.* It has definitely not been easy, in fact it has been hard, real hard. I sometimes wonder if maybe we should have waited till she was 4. Surgery lasted about 5hours to a tee. They called us to a quiet room so Dr. Cotton and his staff could debrief us of how things actually went. Initially they were going to recover one or two ribs and place them anteriorly/posteriorly in her trachea to widen it. However, the docs realized her original trach/stoma (hole for her trachin her neck) was placed way too high and this area is where they needed to open it up about 2addtl inches to perform this LTP surgery. Therefore, they had to give her a brand new stoma (yep-a whole new hole for a whole new trach)lower down her tracheal. I always said I would do it all over again for Tacori if I had to but really never thought I would. Thats what I get So she has a brand new trach that needs to heal all over again on top of surgery. Once the docs placed the new trach they realized her airway was soooo teeny tiny, they thought it would be better to only place one rib graft anteriorly and posteriorly they ended up doing a cricoid split. This means they cut her vocal cords open to help open some space within her trachea. Which also means her voice (if any) will be more hoarse than we thought. They removed "tons" of old scar tissue per the docs and then placed a stent (looks like a plastic hot dog) in her airway to help hold the rib graft in place during the healing process. all in all it went well. Our original stay was supposed to be 10-14 days but Dr. Cotton wants to change plans and have us here for 3 wks before he even thinks about letting us head back to California. So Allen (my new boss) if you are reading this, I will be calling you tomorrow.

Pre-op

After renting a car at the airport and getting to the Hyatt Hotel in Blue Ash it was 1am. Tacori at this point could only have clear liquids until 330am and we were off to Cincinnati Childrens Hospital at 0530. Needless to say we slept all of 1hour after we gave meds, breathing treatments, and some last minute cuddling. We arrived to Childrens at 0600 for pre-op and she was in for her Double Stage LTP (laryngialtracheoplasty) by 0730.

Flying is for the BIRDS!

I know I am a little behind so let's play "Catch up." (unfortunately no pics til tomorrow)

Let's start with our flight. We left Fresno Air Terminal Sunday afternoon around 1pm to Salt Lake City, Utah and it was perfect until we got ready to land. Tacori was silly as can be playing peek a boo with everyone and was stealing hearts like it was her job! We came in for the landing and puke (strawberries/watermelon) landed everywhere before we did. I was wearing flip flops and was sliding on it all the way to next plane.

Our second flight wasn't as lovely. Tacori kept playing peek a boo but if you have seen the news lately Ohio has nothing but Severe thunderstorms,lightning and flash flood warnings right now. So it was only a matter of when she was going to stop puking since we all had major motion sickness. We got caught up in lightning and it was not cool. Adam and I seriously thought we were going down again and again. we were to land about 1030pm and we should have been seeing darkness out our windows and we could see nothing but flashing white lights with major turbulance to boot. But...we made it!

Friday, June 11, 2010

Back to Cincinnati


Well, the time is almost here!! Due to repeated respiratory issues, we didn't know if we would make it or not... but at this point we are almost there-in Cincinnati -that is. We are scheduled to have the first phase of tracheal reconstruction started at Cincinatti Children's Hospital Monday June 14th, 2010. There is a 3 hour difference in time therefore, Tacori should be headed for the OR at 7:30am "their time" and back here in California it will be 4:30am. Dr. Cotton and staff hopefully will be well rested and ready to start their week out with a BANG (hence the pic). They will be taking one or two rib cartilage grafts from Tacori and placing them anteriorly and possibly posterior in her trachea to make it wider so we will eventually be able to decannulate(remove of trach maybe before Christmas). She is a grade 3 subglottic stenosis-which means her trachea is 75-90% closed and would never be able to breathe on her own if this surgery didn't take place. Don't get me wrong, in some ways I have grown to love her trach.It has allowed her to be held by us, to eat, drink, develop and play. But I am sooooo over it in soooo many more ways. The LTP(laryngealtracheoplasty) surgery should take about 4-6hrs. We have started her on bactrim and bactroban to help keep her MRSA from flaring up since she has always tested positive for this "bug". If not treated before hand it could cause more complications than necessary. So please keep up in your thoughts and prayers over the next two weeks as we will be hanging out in Cincinnati for the duration of Tacori's surgery and recovery.