Tuesday, August 31, 2010

She's back!

Josie is the ultimate comeback kid!  She continues to impress us with her daily progress...
...although we're getting a little irritated with the disgruntled attitude.
Apparently she didn't get the memo about how the PICU isn't the most fun and enjoyable place on earth.  What can I say?  The kid blooms where she's planted.  And the charming demeanor and excessive smiling doesn't exactly leave her starved for attention.  We're pretty sure her stay in the PICU has been extended due to the simple fact that the PICU staff doesn't really want to part with her. 

While no one can provide a definitive answer as to what caused her "lung disease" nor why it suddenly cleared up, the bottom line is that she's doing remarkably better. Testing is still underway to try and validate the aspiration/reflux theory.  Yesterday she had a swallow study which did not provide conclusive evidence of aspiration. 
Tomorrow she will have another bronchoscopy and an upper GI study.  Regardless, she will be the proud owner of a shiny new G tube on Friday.  Not only will a feeding tube reduce the risk of aspiration, it will also provide supplementary feedings containing much needed calories to maximize Josie's growth and development.  Josie is 5 months old and barely over 10 pounds and that is not adequate growth, according to the physicians.

In other exciting news, Mama Hop and Aunt Leanne rolled into town to ensure Josie was receiving adequate spoiling during her hospital stay. 
Last week she got a hearty helping of love and attention from Travis' side of the family (including an extra special and much appreciated surprise visit from Uncle Bruce and Aunt Cathy) and this week she gets to enjoy the unceasingly entertaining company of Mama Hop and Aunt Leanne.
 
When Leanne wasn't too busy hitting on, Nick, the Respiratory Therapist ("you're cute!"...  "you're my favorite!"..."Do you want to sing to the baby with me?"), she was showering 'Catfish with Ketchup' with affection.  Did I mention that Leanne also bestowed a food nickname on Nick?  Yes, he now also goes by "Black Olives" in some chromosomally enhanced circles.

Perhaps the best part of our day was receiving the results of Josie's echocardiogram.
Her pulmonary hypertension has once again, disappeared.  With that, Nurse Juliana removed Josie's cannula and we watched as she breathed easily without the supplementary oxygen.
One less thing in her nose!

That's not a half bad oxygen saturation for a kid who couldn't breathe without the aid of a ventilator just over a week ago.  Way to go, Josie!  You are an inspiration!

Friday, August 27, 2010

Extubated

Well, what can I say?  That about sums it up! 

Thursday, August 26, 2010

Flying high

We had another uplifting day today.  Josie was as happy as can be!  She smiled at everyone who crossed her path.  They weaned her ventilator but decided not to extubate today.  If all goes well tonight, they will extubate tomorrow.  Woo Hoo!!!! 

Wonderful Nurse Katie, from the pediatric floor, stopped by the PICU to spend some time with Josie.  We love Nurse Katie!  She radiates kindness and compassion.  Visits from Katie are always appreciated because she has a really comforting vibe which helps keep Josie's neurotic mama nice and calm! 

And just when we thought this day couldn't get any better, Josie received a thrilling surprise from blogosphere celebrities, Pudge and Zippy - a spectacular balloon bouquet!  Something tells me that sprightly duo knows a thing or two about how make a baby forget she's in the PICU.  Josie was captivated by those shiny and colorful floating treasures! 
This is even better than the ceiling fan!

Josie's infatuation was so steadfast that she made those doctors and nurses work around those balloons to check her vitals.  It's actually quite humorous to see a resident get tangled in a cluster of mylar balloons while tryng to assess her patient.  Talk about the cherry on top of one terrific day!  What a heartwarming gesture infused with love and encouragement.

Stay tuned for tomorrow's live report!  Papa, YaYa, Travis and I are all eagerly awaiting the opportunity to hold our sweet baby Josie once again. We could just burst!   


Wednesday, August 25, 2010

The power of prayer

Doesn't she just look like she wants to break free from her baby straight jacket and hit the road?!  Miss Josie has made such remarkable progress over the last few days.  It's a truly astounding testimony to tenacity, perseverance, and the power of prayer. 
I am pleased to report that today Josie ditched her catheter AND the line in her groin (I forget the technical name) and she is weaning off her nitric oxide.  Oh and did I mention that her oxygen saturations have been in the mid to high 90's?! 

While no one will commit to a definitive diagnosis nor a long-term prognosis, the current theory is that Josie has been aspirating when she eats and is ending up with formula in her lungs.  We will not know more until she is extubated and can complete a swallow study. 

Speaking of extubated, I just checked in with the incredibly talented Nurse Andrea (by the power vested in me, I hereby give her an MD because as far as I'm concerned, she deserves it) and it sounds like if all goes accordingly, they are going to try and wean the ventilator!!  While I don't want to get my hopes up, I am SO proud of the progress our little fighter has made. 
Brilliant Nurse Andrea
(she allows me to sleep well knowing that Josie is in her care and that is priceless)

We are still in the Pediatric Intensive Care Unit, and Josie is still a long way from getting to return home, we are so encouraged and grateful for the improvements she is experiencing. 

I will keep you posted!

Another encouraging email from Aunt Leanne

World's Best Aunt


catfish with ketchup,

get well soon,

i am pray,.

see next week

we have burger

s for chesese

mushrooms

for dinnner

i love you josie



Keep praying, Aunt Leanne.  God is listening!  We love you! 

Tuesday, August 24, 2010

One spirited baby

Josie is sedated so she sleeps most of the day but yesterday she had a decent period of wakefulness where she took advantage of the opportunity to work on her boxing skills.  Take that Dr. Doom and Gloom! 
video


This video was taken a couple of weeks ago.  It's what we're working towards!
video
Josie is quite the talker!  I'm sure she'll have lots of good stories to share about the trippy dreams she's been having while on all of these medications in the PICU! 

Monday, August 23, 2010

Our prayers are being answered!

During rounds this morning, the nurse pulled up Josie's x-ray and stunned all of the doctors, fellows, and residents.  You don't even have to be a medical professional to interpret these results:

There is a significant decrease in the haziness in her right lung.  That "gunk" in her lungs appears to be disappearing!  Dr. Doom & Gloom even said "When she gets off the ventilator..."  Ha!  Shame on him for giving up on her and for breaking our hearts.  She is a strong little girl who will persevere! 

I must reiterate our sincere appreciation to everyone for your love, support, and prayers for this little baby of ours.  Please keep it up - it's working! 

Sunday, August 22, 2010

A step in the right direction

I find myself reluctant to blog when I do not have good news to report, so I apologize for leaving you in the dark. Then I remind myself that this blog was intended to be an honest portrayal of the blessings and challenges of the chromosomally enhanced life and this situation is the challenge of all challenges.
 
On Friday afternoon, Doctor Perspicacity quickly became Dr. Doom and Gloom as he accosted Travis and I with a very bleak prognosis and told us to prepare ourselves for the worst.  Our hearts instantly shattered.  Saturday morning, Travis' parents arrived and Travis' brother rushed to the airport so he could be here to meet Josie.  It was an agonizing, tear-filled day. 

We did, however, encounter a couple of new doctors who demonstrated that they were nowhere near ready to give up on our sweet Josie.  We were also blessed with Nurse Krista, who embodies optimism and truly believes in Josie's ability to pull through. 
Thank God for Nurse Krista!

I woke up this morning with a good feeling about this day.  We arrived at the hospital to find that Josie's saturations were slightly higher on slightly less oxygen.  That was a step in the right direction; a much needed sign that we are turning a corner! 

This afternoon, Josie briefly woke up and was content.  Her saturations remained high and she smiled at us.  My father-in-law captured this picture with his cell phone:

The doctors still have not discovered the source of the problem.  Josie does have pulmonary hypertension.  Her CAT Scan showed "gunk" in her right lung.  We cannot identify the "gunk" without doing a dangerous biopsy and even that may not tell us anything.  She is currently on antibiotics, pain medications, sedatives, Nitric Oxide, Oxygen, and Lasix to try to drain some of the fluid that has accumulated around her lungs. 

We remain hopeful as we wait.  We pray that each day we are greeted with the subtle improvement Josie demonstrated today.  I anxiously await the day I can blog to tell you that she is off the ventilator...and that she's out of the PICU...and that she gets to go home...and comes back to punch Dr. Doom & Gloom in the face (Travis' idea, not mine).  With all the love, support, and prayers that surround our sweet baby, we know she will recover.  We've got BIG plans for this kiddo! 

On a lighter note, I'd like to congratulate Leanne for winning a silver medal in her Special Olympics Bowling tournament this weekend.  She bowled an impressive 101! 
You go girl!

Friday, August 20, 2010

Josie Update

On Tuesday, Josie was moved up to the Pediatric Intensive Care Unit (PICU) in anticipation of her cardiac cath on Wednesday.  One astute nurse had the idea to turn her on her belly to see if it would increase her oxygen saturation.  Sure enough, it worked!  By relieving the pressure on her pulmonary arteries, she was able to breathe better. 
Josie has not been on her stomach for the last six weeks while she recovered from her open heart surgery so she was fascinated by the new vantage point;  albeit, a little too interested in her CPAP tubes...
I wonder what happens if I karate chop this right here...

Problem solved by a few strategically placed, brightly colored plastic rings. 
 (Thanks Deb!)
Knowing that we would no longer be able to hold her once she was intubated for her cardiac cath, we took advantage of the opportunity while we could.
Josie and her mama

Josie with Mama Hop & Aunt Leanne

Unfortunately the cardiac catheterization did not provide the answers we were seeking.  Josie had a CAT Scan this morning and we are hoping that will give us some helpful information as to what is causing her pulmonary hypertension.  She remains intubated in anticipation of further testing.  She is also heavily sedated. 

Today marks a week that she has been hospitalized.  We sit here and wait, praying that someone discovers something that identifies the source of the problem. 
While I have certainly had my emotional moments, I derive hope from many sources including 1. In the middle of an emotional meltdown last night, one doctor told me last night that he believes she will recover 2. We have a new PICU doctor today who seems particularly perspicacious and confident 3. Aunt Leanne prays for Josie every day 4. Many people, all over the country (even wonderful people we don't even know from the blogosphere) faithfully pray for Josie and this means so much to us. 

Thank you!

Thursday, August 19, 2010

Hospital update written by Aunt Leanne

have baby catfish with ketchup
favoite baby i love you
payer for you
every nght
in now came to visit
kiss
hospispiato
get better
soon go home
love  leanne chesesbuger
head

Sunday, August 15, 2010

Friday the 13th

Friday the 13th lived up to its doom and gloom reputation at our house.  Josie experienced a scary breathing episode that landed her in the ER.  She was later admitted and evaluated by a cardiologist (and about 85 residents).  We settled in to our old stomping ground and reacquainted ourselves with the pediatric nursing staff who cared for Josie post open heart surgery.
Saturday we were told that Josie's breathing problems are the result of her pulmonary hypertension - high blood pressure in the arteries of the lungs.  Post surgery, her pulmonary hypertension appeared to be resolved but it has slowly reappeared.  The next step is to find the cause of the problem so treatment can be administered. 
An echo cardiogram was performed today and we were told that Josie will undergo another cardiac catheterization procedure later this week which will supply many more answers. 
The poor kiddo has gone from 1/8 L of oxygen to 1/2 L to 1 L and now she has a feeding tube and a CPAP.  Now tell me, would you be looking like this if you were in the same scenario?
In the ER


Oxygen, IV, and a feeding tube


Restrained with a CPAP, feeding tube, and IV

I'd be lying if I said she hasn't had her attitude moments (she yanked her feeding tube right out this afternoon), but all things considered, she's a model patient and we are so proud of her! 

We'd like to thank everyone for including Josie in your thoughts and prayers.  Your support means so much to our family.  We'll do our best to keep you posted! 

Thursday, August 12, 2010

The O2 Blues


Well, it's been a rough couple of days around here.  Josie had her one month post-op check-up with the cardiologist yesterday.  It turns out her pulmonary hypertension is back with a vengence. 
At this point, it is being attributed to an airway obstruction (not heart problems, thank heavens) so she has an appointment to see an ENT doctor in a few days to talk about tonsils, adnoids and other fun things like that.  In the meantime, she's sporting her oxygen cannula around the clock again.  Poor thing!  While the cannula is not exactly at the height of fall fashion trends, Josie hasn't let it stop her from enjoying her daily activities like...
Leg Lifts (this kid has abs of steel)

Enthusiastically cheering for the ceiling fan

And just sittin' around being cute!
(Don't worry Ya Ya - I fixed her ear so it won't stay that way) 

We have the utmost confidence that we will find a simple resolution to her breathing problems and that Josie will work really hard to eat well and gain weight so she can achieve her developmental milestones and continue to thrive.  

Besides, what's there to worry about when Aunt Leanne prays for her every day?  She's got some extra pull with the Big Guy Upstairs - this much I know!   

Tuesday, August 10, 2010

Hospitality - a gracious email from Aunt Leanne

We received the following email from Aunt Leanne expressing her appreciation for our "hospitality" last weekend.  She is so polite (and obsessed with food).


dear eliabeth travisand


josie catfish ketup

on friday

spend night

thanks good time

i read book

4 to joise

good

spageetti

chese

saturday breakfast was good

sandwich ham egg chese

and juice grape

thank you

hospitalty

love leanne

Sunday, August 8, 2010

Mama Hop & Aunt Leanne visit

Mama Hop & Aunt Leanne came to visit us this weekend.  As always, we had a great time! 
Josie was thrilled to see her Aunt Leanne

Leanne was kind enough to accompany me to my oral surgeon appointment for moral support.  I have postponed having my wisdom teeth removed long enough so I'm conquering my fear with Leanne's help.  Leanne is a huge proponent of oral hygiene.  She brushes her teeth after every meal.  Her motto is: "A clean teef is a happy teef."
Leanne came to visit her "favorite sister" (of course I'm her only sister)

On the way home, Leanne reiterated the list of foods I wouldn't be able to have post-surgery by naming essentially every solid food she could think of (gee thanks, Leanne).  After we got that out of the way, we came home, met up with Travis and headed off to Happy Hour!  That's the beauty of having Mama Hop in town - she is happy to stay with the baby so we could actually go out with our friends for a bit.  Leanne accompanied us, as our friends always love to see her when she's in town. 
Miss Popularity

Travis and Leanne practice counting change while waiting for our friends to arrive

We had a fun time.  When all the friends dispersed, Travis dropped Leanne off at home to help my mom babysit Josie, and he came back and enjoyed a nice dinner with me. 

 The next morning, I woke up to one of the most beautiful sights I'd ever seen:
Mama Hop & Josie cuddle on the sofa while Leanne reads aloud

I don't know if it was the endearing moment, or the fact that I was able to sleep in until 8:30am because Mama Hop got up and fed and entertained Josie, but it was a lovely sight to wake up to either way.  Later that morning, I actually convinced Mama Hop to let me drive her new car! 
The funny thing about this car is that Leanne has finally agreed to sit in the passenger seat.  In the old car, Leanne insisted on sitting in the back seat, having my mom chauffeur her around Driving Miss Daisy-style.  I'm telling you - she lives up to her nickname as the Down's Diva! 

After lunch, Leanne spent some more time loving on her niece before it was time for them to head back home.  Leanne thanked Travis and I profusely for our "hospitality".  I think she just likes saying the word, "hospitality".  Travis and I thanked mom and Leanne for coming and made them promise to come back soon. 

Wednesday, August 4, 2010

Bad Girl - Another email from Aunt Leanne

Leanne imparts her wisdom on the next generation

One of the most beautiful things about my sister is her innocent candor.  Today, she sent another email to Miss Josie (Catfish with ketchup) .  In true Leanne fashion, no smoke was blown, no words were minced, no details were sugarcoated.  I now present a valuable life lesson issued from experience, aunt to niece: For every action, there is a consequence. 

dear catfishwith ketup


cant wailt to see you

friday.

i miiss bowing alley

baad gilrl

mean to grandpa

mean to mom

talk back

got rude

mom

still

love
 
leanne
 
If you get rude and talk back, you will have to miss Special Olympics bowling; but mom will still love you. 

This actually takes me back to my childhood when Leanne would misbehave and get sent to her room.  She would beg me to bring her a piece of paper and a pen so she could draft an apology letter to my mom.  It usually went a little something like this: "Dear Mom.  I sorry you got mad at me.  I forgive you.  Out my room please.  Love, Leanne"  Worked like a charm every time! 
 
Josie - I hope you're paying attention.  That's 33 years of experience talking.  Just wait until it's time for her to give you career advice...That's another post for another day! 

Tuesday, August 3, 2010

Josie with hair

Josie with hair...

She kind of looks like the 5th Beatle

The things we do to entertain ourselves around here...

Monday, August 2, 2010

Josie's on a vacation far away

Well, it wasn't really far away per se, but I was just dying to reference the song that inspired her name (I'm sure it won't be the last time).  Anyhoo, we took Josie on a little weekend trip to her grandparents' house and we had a great time.  They have awesome ceiling fans so Josie was delighted! 

As usual, Lil spent the weekend cowering on the sofa in her typical antisocial attempt to avoid fraternizing with these two intimidating Shih Tzu's...

Pretty scary, aren't they?  Meanwhile Lexie was too busy to worry about Lilly's snub; she was fascinated by Josie.  Josie, however, was fascinated by her hands. 

We enjoyed a nice dinner together and we got a really big kick out of the fact that the hostess brought Josie crayons and a coloring book.  I mean, we think she's a prodigy but come on!  HA!  Needless to say, we photographed our little Picasso with her art supplies.

Overall, it was a great weekend.  Josie got lots of love and attention from her Ya Ya and Pa Pa (and Lexie).
Josie is a lucky girl to have such loving grandparents.  I would like to issue a personal thank you to Pa Pa and Ya Ya for creating this amazing young man with whom I will celebrate 8 years of marriage tomorrow. 

Happy Anniversary Travis!  I love you!