Getting Closer

Yesterday Finley was sprung from the PICU! She now has a room with a "view" on the 7th floor. While figuratively we moved further from the door, technically, this move is a very good thing and boy ph boy is it nice to be out of the PICU! It had gotten VERY busy/crazy down there in the last couple of days.

Finley has been doing great - its just that she has needed a little boost of oxygen while she sleeps. I had actually planned to spend the night at the hospital on Thursday but it had seemed there was a good chance she might come home yesterday so I came home with the plan that'd I'd bring her pump and everything up to the hospital on Friday since all of that stuff was at home. Then, when I called the hospital Friday morning, I found out she'd needed a little oxygen overnight as she slept (this happens because as we sleep, we breathe slower and more shallow). That said, coming home was off the table for Friday but we are still hopeful it could be this weekend yet. I am anxious to see how she did the balance of the night-when I called at 2:30am she was still off so our fingers are crossed tightly. It sure is hard to remain patient - we all miss her so much we just really want to get her home so badly but obviously not until she is ready.

Nate starts ice skating lessons today-should be interesting! I really hope it doesn't wind up like his swimming lessons did where he never even got in the pool!

I think I shall wrap this up as typing this on the iPad is proving to be a bit of a challenge (I keep hitting the m and n keys instead of the spacebar!). I promise thee will be some pictures to come this weekend- our computer is finally fixed- we just need to find time to pick it up! Have a great weekend!

P.S. My spell check seems to have disappeared so read at your own risk!

Saturday, February 26, 2011 | | 2 Comments  

I Stand Corrected

So just a quick note as I have to log off and head home.  Clearly Finley wanted to prove me wrong on my last post.  When I got to the hospital today I found out that they had taken her off the bipap to see how she'd do without it.  No more trials - full blown off the mask and on to high-flow oxygen.  How'd she do you ask?  AWESOME!  She has done a phenomenal job maintaining her saturations and her carbon dioxide levels have been at their lowest since she got here.  They even lowered the pressure on the high flow from 6 liters to 4 and she has done awesome.  She has been 100% Finley like today - or as the nurse told me when I came in, "She's been wild".  I love it.  She is clearly feeling better and appears to be on the way to turning the corner on this.  The only bad thing?  Lots and lots of mucous!!! Bleh.

Wednesday, February 23, 2011 | | 5 Comments  

One Step Forward, Two Steps Back

Okay so maybe that is a slight exaggeration but that is sure what it feels like.  Finley has been back in the hospital for six days already.  SIX DAYS!!!  Admittedly, I didn't know what to expect when she got admitted, but I certainly didn't expect it to be this long but alas, the "end" isn't even in sight.

On Saturday, they began trying to wean Finley off of the bipap - but after three hours off, her carbon dioxide level sky rocketed and she went back on.  They tried another trial that evening and all her sats/stats went a little haywire so they put her back on the bipap exclusively.  This was after she had what I would consider to be a good day on Friday.  Her fever also returned on Saturday - go figure. 

Sunday she had no fever but when they attempted to give her a trial off of the bipap, her carbon dioxide level shot up to 67 in 15 mins time (they want her to be 35-45).  Back on she went.

Monday, she had a great day.  Or so I thought.  And hour off the bipap in the morning and she rocked it.  She really began showing signs of herself on Monday, was very happy and playful when the mask was off her face.  Lovin' life.  She had another 30 minute trial off the mask in the evening - both times, she held her carbon dioxide levels at around 43 - GREAT.  Then, overnight, she got really junky.  Her oxygen saturations were low, her heart rate was high and she was coughing a ton.  But it was a very productive cough - which is good.  The problem is - even after a marathon suctioning session from about 4 am - 5 am, she STILL sounded junky and her oxygen saturation was still so low - but she needed a break from the suctioning because her heart rate was really high and her carbon dioxide level had gone u p significantly - so the only option was to turn her oxygen levels up to 50% (she had been at 30%).  Of course this felt like a step back.

Then today, she had an almost 2 hour trial off of the bipap and did AWESOME.  Even better than before - she was 100% Finley.  Cracking the nurses up with her intense love and interest in her comb.  Yes folks, her comb.  I am not sure why but she adores this comb.  Every time I comb her hair, she gets a comb and I get a comb - otherwise she is constantly craning her neck around as I comb her hair - in and effort to get at the one I am using.  But I digress.  Even after she went back on her mask, she remained in a good mood - and that doesn't usually happen.  This afternoon she was flipping on to her tummy - in spite of the IV in her hand and the mask on her face and was trying to get herself on all fours.  It was hilarious.  I had to leave at 4 pm so I could pick up my little man (he missed me last night) and she was napping when I left.  Oh yeah, the fever also returned this afternoon.  Though she was showing no signs of it (elevated heart rate, etc.).

So back to the one step forward, two steps back thing.  See what I mean.  Its like we have to take the good with the bad - and I am not diggin' that right now. Not when we are enduring this completely unexpected and seemingly prolonged stay in the PICU. I want to bring my princess home!!!  I am trying to dig deep for patience here - so far I am coming up empty handed!  UGH.

Which brings me to the last thing.  God the PICU holds so many bad memories.  Yesterday I saw the surgical team bringing a baby up from heart surgery.  A young baby, with the whole team in tow, getting the child situated in their room, with the rack full of all of the medicine pumps nearby.  That bed - the one with the heater overhead.  God that took me back to August 21, 2009 - the day of Finley's first open heart surgery.  I immediately texted my friend Mary - her family and ours went through many of the same things surgery wise around the same time.  Her memories are as fresh as mine.  God I still remember that Friday afternoon they took Finley in to surgery.  1 pm.  Nate's 3rd birthday.  I remember the waiting, and then getting in to see her around 9 pm.  I remember Hector - our amazing nurse. He was so meticulous, setting everything up so it was "just so".  God I am happy we had Hector that night.  I knew Finley would be in good hands.  Ah the memories.  And while I am on the topic - a very HAPPY ONE YEAR ANNIVERSARY for Finley's girlfriend Leah from the NICU.  One year ago today Leah had her heart repair surgery.  GO LEAH GO!

I promise to post some pics once our home computer is back from the "shop" being repaired.

Tuesday, February 22, 2011 | | 2 Comments  

Something is missing

God I hate not having Finley in the house.  On numerous occasions in the last two days I have found myself listening for the sounds she makes.  I will hear something and it will give me pause - you know how when you child is in the crib and you are listening to the monitor and you hear something so you go check on them?  Its sort of like that feeling x10.  Finley loves to play in her crib when she wakes up (whether that be in the middle of the night or first thing in the morning - its ALWAYS a party in there!).  One of my most favorite things to do is listen to her playing and babbling over the monitor first thing in the morning while I am downstairs mixing her formula for the day.  Of course, I've also become keenly tuned in to listen for any sounds - coughing, crying etc. so pretty much anytime I am upstairs, I am listening.  Anyway, there have been several times the lat two days where I think I hear these little sounds that Finley makes and then I realize I am just crazy because Finley isn't here.  Hopefully, that will change sooner rather than later though!


When I called the hospital overnight, the nurse said that Finley had slept well and that they'd been able to begin weaning her off the bipap - she is down from 50% oxygen to 30% now - which is awesome.  She still sounds really wheezy though so she's still getting Albuterol treatments every 2 hours.  The nurse also gave her a bath and she said that Finley giggled through the WHOLE thing.  Which is a good indicator that she is indeed feeling better as we haven't seen a smile in the last two days (although it is pretty hard to see smiles when she has a giant mask strapped to her face!).  Needless to say, hearing that melted my heart - Finley LOVES baths - I can just hear her raspy little giggle in my head now.  As of yesterday, they were planning to restart her feeds today so we are just hoping she tolerates them well.

I hope everyone has a great weekend - we will keep you posted about Finley!

Saturday, February 19, 2011 | | 3 Comments  

Roller Coaster



Finley watching Nate's "DDD" with him (and holding hands!) - so sweet!

So I guess this is what I get for it taking me three weeks to update this blog.  When I look back at my last post - and how I talked about how good Finley has been doing and now here I sit typing this in room 229 - the PICU at Children's.  Finley started coming down with some cold symptoms on Tuesday night - tons of coughing and Mike and I were up half the night trying to suction her and hold her upright so she could fall asleep.  At that time, I wasn't overly concerned as Finley has fought off two colds this season and got over them quickly - I assumed this would be one of those colds.  Needless to say - it is not.  Wednesday I had to be in the city all day in a client meeting and the took my client out to dinner that evening.  Gigi had texted me a bunch throughout the day and Finley seemed to be holding her own but at the end of the day she sent me a text saying she didn't like the way Finley was breathing - fast and shallow.  When I got home Wednesday evening, she was awake, not coughing much, and while she was working a little harder, it didn't seem to bad - probably because, bless her heart, she was still in a good mood - albeit pretty lethargic.  That quickly went downhill overnight - I tried suctioning her and it wasn't working.  She wasn't coughing much but her breathing had really begun to concern me.  Not only was she breathing very fast and shallow, I could feel her heart racing when I put my hand on her chest.  I sat in her rocking chair, holding her, and was contemplating whether she might need to go to the ER.  This is something I struggle a lot with as the mom of a special needs child - trying not to hit the panic button and trying to get myself to think about her as a normal child.  Maybe I was being paranoid. 


Bundled up to play in the snow after the blizzard.


Yesterday I had to be in the city with my client again and unfortunately - I was leading a strategy session with the client so I couldn't miss it - they traveled in from OH for the meeting.  Mike brought her to the pediatrician in the morning and they promptly sent him to the ER.  This was the first time I've not been able to be there and it sucked.  A lot.  As they began to triage her, they put the pulse ox on to test her blood oxygen level and it was 74 - extremely low.  This is even low by "pre-heart repair" standards.  Needless to say, Mike said at that point the ER doctors swarmed Finley.  They put her on 50% oxygen and immediately admitted her and had been contemplating between the 5th floor where she normally stays or the PICU.  Because of the amount of oxygen she needed to be on - they admitted her to the PICU.  Since then they've changed her from regular oxygen to a bipap which helps to break the oxygen in to smaller particles so it can get through her compromised airway and it also warms the air.  She is also getting Albuterol treatments every 2 hours.  They tried to switch them to every 4 overnight but she couldn't tolerate it and so they have stayed with every 2 hours.  She was running a fever overnight, which is now under control, but she's still having some issues moving enough air into her lungs and so they are watching her closely and will consider intubating her if she doesn't improve.  She seems to have more energy today though than she has in the last couple of days because she's VERY upset about having the bipap mask on her face and immobilizers on both arms so she doesn't pull it off.  My poor baby.

And so it is, this roller coaster we're on.  Hoping to be on the upswing again soon.  Please keep Finley in your thoughts.


Practicing standing in my snazzy shoes.

Trying out her new chair - kindly donated to our vision therapist Marla by another family.

"Hey, this is pretty cool!"

Nate thinks its pretty cool too.


Daddy and his girl.

Friday, February 18, 2011 | | 5 Comments  

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Finley's Medical History

Born on 8/8/2009 - Finley is taken to Children's Memorial Hospital via the transport team 12 hours after she is born.  She is having trouble breathing and is turning blue.  She is immediately admitted to the NICU.

8/9/2009 - Finley is diagnosed with Tetralogy of Fallot, a congenital heart defect and laryngomalacia, a condition that causes her to aspirate whatever she swallows in to her lungs.

8/21/2009 - Finley has open heart surgery to place a Blalock Taussig shunt to help facilitate proper blood flow.  When she is older, she will require a full repair of her heart.

9/10/2009 - Finley is released from the NICU.  Because of her laryngomalacia and reflux, she is fed 100% through a nasal gastric tube.

9/14/2009 - Finley is re-admitted to the hospital for an infection in her surgical wound.  Finley's genetic test comes back - she is diagnosed with CHARGE Syndrome.

9/15/2009 - During a CT scan to assess the infection, the doctors notice something strange on her CT.  It appears Finley has a malrotated bowel and will require surgery.

9/23/2009 - Finley is examined by the opthalmologist and she is found to have colobomas, a condition common with CHARGE Syndrome, in both eyes.  The degree of her visual impairment is unknown.

9/30/2009 - Finley has the Ladd's Procedure to correct the malrotation and also has a g-tube placed.  

10/7/2009 - Finley has a sedated ABR to check her hearing.  She has a mild hearing loss in her right ear and a moderate to severe loss in her left.  Her loss can be at least partially corrected with hearing aids.

10/8/2009 - Finley is supposed to be released from the hospital today but she has been having low blood sugars.  The endocrinology is called in to evaluate her.

10/29/2009 - Finley is finally released from the hospital with a unconfirmed diagnosis of hyperinsulinism.  Actual diagnosis requires fasting blood tests - because of her heart condition, it is not safe for her to fast.  She needs to have her blood sugar tested every three hours and we are taught how to administer an emergency glucagon injection in case her blood sugar gets to low.

11/1/2009 - Finley requires emergency injection because she cannot sustain her blood sugar.  She is taken to the local ER and transported via the transport team to Childrens Memorial.

11/10/2009 - Finley is discharged from the hospital on a 24 hour continuous feed.  We add polycose to her milk to help her keep her blood sugar at an acceptable level.

11/22/2009 - Finley is taken to the local emergency room with a bad cold - she is having trouble breathing and her oxygen saturations are low.   She is transported via the transport team up to Children's Memorial.

11/25/2009 - Finley is released from the hospital - just in time for Thanksgiving.

12/8/2009 - Finley is taken to the local emergency room for observation - she has a bad cold.

12/21/2009 - Nate is chasing the dog and the dog runs in to Finley's IV pole, knocks it down and pulls out her g-tube.  She is taken to the ER at Childrens to have it put back in.

2/10/2010 - Finley is admitted through the ER at Childrens - she has a bad cold again.  Oxygen saturations are low and breathing is labored.

2/13/2010 - Finley is released from the hospital.

4/17/2010 - Finley is taken to the ER at Childrens - she has pus draining from her belly button.  They suspect a urachal cyst - they send us home with orders to return on  Tuesday (during our scheduled visit) for an abdominal ultrasound.

4/20/2010 - Finley is admitted to Childrens for an overnight stay.  She will have a swallow study and abdominal ultrasound on Tuesday and a CT and sedated echocardiogram on Wednesday which will require anesthesia.

4/21/2010 - The anesthesiologists have trouble intubating Finley, so they call in her ENT to have a look at her.  He observes that her airway is 75% closed off - partially due to scar tissue from previous intubation and partially due to an infection.  The diagnosis is subglottic stenosis and may require her to have surgery on her airway.  She is immediately admitted to the PICU and put on a 24/7 breathing treatment and antibiotics and steroids to help reduce the inflammation.

4/26/2010 - Finley is well enough to be taken off of all oxygen.  Immunology and Infectious Disease are called in to examine Finley because the culture of her throat are growing staph and strep.  Infectious Disease is trying to figure out what could have caused her infection.  Immunology labs will be drawn to determine if Finley has an immune problem which sometime occurs with children with CHARGE.  This is the second significant infection she has had since she was born.

4/27/2010 - The lab calls to say that they mis-read Finley's airway culture.  It's not growing staph - its only growing strep.

4/28/2010 - Immunology labs are back and don't show anything significant.  Finley's lymphocyte counts are low but that isn't unusual for a child who is fighting an infection.  The doctor wants to re-examine her before her first birthday.  In the meantime she cannot have any live vaccines.

4/29/2010 - Finley is discharged from the hospital.  The ENT will do a bronchoscopy before her heart repair surgery to determine next steps on her airway issue.

5/11/2010 - Finley has open heart surgery to repair her heart.

5/17/2010 - Finley begins to show signs of infection which is later identified as a urinary tract infection.

5/25/2010 - Finley is discharged from the hospital.

5/30/2010 - Finley goes to the ER at Childrens because of fussiness, sweating, heavy breathing.  And echo later identifies that the pressure gradient around Finley's pulmonary valve is an astounding 90%.

6/1/2010 - Finley is admitted to Childrens to try a medication called Propranolol to help ease the pressure in her heart.

6/2/2010 - The Propranolol brings the pressure in Finley's heart down from 90% to 50%.  Finley has a positive test for C. difficile which will require antibiotic treatment.

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