Tube free - the way to be

Sorry faithful blog readers (all 5 of you LOL!) I know this post is late - I know at least one of you was worried (sorry Jen-haha) but mommy was beyond beat last night and feel asleep not once, but twice on the couch last night and thus had an early bedtime. I guess sleeping on those fold-out chairs at the hospital a couple of times this week will do that to a girl!  Anyway, on to the good stuff!

Finley had a great night overnight Thursday in to Friday and the plan was to take her to the OR to be extubated around 12:55 pm.  So I waited for the docs to make their rounds Friday morning and as soon as they came by I stepped out to go pump.  When I got back (it was about 9:30 am), there were several doctors clothed in surgical gear in Finley's room and so I actually stopped in the hall, checked the room number (thinking I had come to the wrong room - nope - 206 - that's us) and as it turned out they had an opening in the OR so they came to take her WAY early!!  WHOO HOO - I was lucky I didn't miss her and SO happy they took her early.

The process didn't last long and they called from the OR to request a CPAP before she came back.  That is a mask that goes over the nose and mouth and provides a more forceful flow of oxygen than a regular nasal cannula would.  They requested this because of Finley's airway challenges and they thought she would need a little something extra to sustain her. When Dr. Hollinger came to talk to me after the extubation about the bronchoscopy - he said he airway was still inflamed and while it was bigger than normal from having the tube down it - the concern was that it would swell causing the need to be re-intubated and so he said very frankly that yesterday would be "touch and go" as far as needing to have the breathing tube put back in.

So, they brought Finley back from the OR, got her set up on the CPAP mask and I had an opportunity to see her beautiful little face before they got her all hooked back up and she looked really, really good.  At that point I warned the nurse practitioner that she wasn't going to take kindly to having that contraption strapped to her face and I gently suggested that they might want to consider keeping her on the sedation meds (having gone through this once before I KNEW she would try to take the mask off as soon as she had a little fight back in her) but they decided to keep her off them. No more than 30 mins later when the anesthesia from the OR wore off - guess who wanted that mask off?  Needless to say, they came back in to resume the sedation meds (and I sat there thinking - told you so!).  Needless to say, I was actually expecting Finley to come back from the OR, working really hard to breathe - pulling in at her sides and just over all having a hard time - similar to what we saw 10 days ago when she had the infected airway and when we first found out about her subglottic stenosis.  And to be honest - I am pretty sure all of the docs expected that too.  But she was calm, not working hard at all and really doing a fabulous job!  And her first blood gas - which is more or less a gauge of how effectively she is breathing - came back excellent and all of the doctors were so impressed!

And so it actually ended up being a pretty big day for our girlfriend - when she came back from the OR they also pulled one of her three chest tubes out and were only really leaving the other two because Dr. Backer had concern that the bronchoscopy could cause a pneumothorax - hopefully those will be removed today.  She also got her Foley catheter out - I have never been so excited at the thought of changing a diaper in my life!

Finley continued to do well all day, her 4 pm blood gas was again excellent but when I called overnight (three times - LOL) the nurse said that Finley had woken up a couple of times, sad and frustrated with the mask and they had to give her a little more sedation to get her to calm down.  This of course makes mommy sad to know that Finley has that stupid mask making her uncomfortable after all that she has been through.  But when I spoke to the nurse this morning, she said that Finley got a bath overnight and when she took the CPAP mask off her for a bit for the bath - she was instantaneously soothed by being able to put her fingers in her mouth (this is bringing tears to my eyes as I type because I know how much she loves those fingers and her paci) and so the nurse called in the respiratory therapist to see how good Finley was doing off the CPAP and so she said during rounds this morning she is going to recommend that they try Finley on the regular nasal cannula for oxygen.  KEEP YOUR FINGERS CROSSED. Of course if this happens, daddy will again be the one who benefits (he got to be there last time she came off the mask and got to hold her first) because he is planning on spending the day at the hospital today and giving mommy some time with her little man!  And now that I think of it my mom and sister will benefit too because they are going up for a visit today!  Seems my timing is a little off, eh?

As promised though - here is my cute a button princess with her piggies in on Thursday.  Note the yellow-ish colored stuffed animal in the foreground - that is a Pluto stuffed animal that Nate picked out for her the other day when Nate had his special day with grammy.  He is so thoughtful like that.  And ask it turned out, Pluto ended up being a nice prop for her breathing tube!  Now that its out - he's back to serving his original purpose - cuddling!


You know, one of her surgeons said something yesterday during rounds that really perked my ears up - we love our doctors so much and coming from one of them it really did mean a lot for me to hear it.  He said "I think Finley has turned the corner" - and you know - we really feel hopeful that he is right!

And so yesterday was a good day overall.  After Finley had been resting comfortably for a while, I headed home in an effort to beat rush hour traffic AND the American Idol pandemonium in downtown Mt. Prospect which happens to be on my way home.  Unfortunately I encountered both and it took me about an hour and a half to get home but I had a nice afternoon home with Mike and Nate. I chased Nate around in the backyard in nothing but his Buzz Lightyear underwear and his yellow crocs (yes - you read that correctly) and we just spent the afternoon chillin'.  And as I mentioned before, I was simply beat so it ended up being an early night.

And here you have Nate introducing Rosey to "her new friend" the dog (that is a solar light for my patio).  When I came home yesterday, the light was in the living room, surrounded by Nate's toys because he'd been playing with it!  Then he proceeded to pick it up by the tail (the only way he carries it) and to chase Rosey around some more trying to make the introduction.  Bless Rosey because she is SO good about all of this!

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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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