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:

mary nunez said...

I'm praying for sweet finley! We share many of the same memories and we will have to live with them for the rest of our lives but I hope and believe that those memories made us who we are today and will continue to make us better people:) But I agree they hurt! and bad! People always say our girls wont remember any of this, but we will!Hang in there tracy we love you guys!

February 22, 2011 at 10:49 PM  
Kurby Family said...

So sorry about the two step you are doing lately, not a fun dance! I hope and pray that things get figured out quickly and moreso effectively.

I know what you mean about memories and certain days in the hospital engraved in your head forever. When I first read that Finley was down at Childrens and then in the PICU and which room, I know exactly where that room is and the images of many stays there are something not ever forgotten. There certainly is no place like home, and I hope Finley gets back to her usual self for good and gets back home very soon!

February 23, 2011 at 2:13 PM  

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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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