Goodbye Monday. You will not be missed.

As though Monday's weren't bad enough, I have sort of been dreading today an extra special lot.  Mike is out of town through Wednesday and in addition to Finley's two doctor's appointments this week (today and Wednesday) I also have/had two client meetings this week (today and Wednesday).  Not to mention my own physical on Thursday (which I am dreading but that is a whole other story entirely).  My day went a little something like this:

Wake up at 4:30 am.  Pump.  Mix milk.  Shower. Start the sprinklers (our second try at growing grass this summer).  Get Finley up, changed, hearing aids in, etc.  Get Nate up and situated.  Get dressed.  Get Finley's stuff packed up and leave at 7:15 am for Finley's 8:30 am appointment with the Immunologist at the Children's clinic in Lincoln Park.  Leave the clinic at 10:15 am, get home by 11 am.  Change clothes, make lunch (that I can eat in the car) and turn around and drive BACK out to the city for a 1 pm client meeting.  Leave the office at 3:30 pm and sit in the afternoon rush hour to get home.

Bad planning you ask?  Perhaps.  But when Mike's trip got scheduled it was already too late to reschedule these appointments.  The Immunologist wouldn't have been able to see Finley until September and it couldn't wait that long and who knows how long it would take to reschedule the urology appointment considering that got scheduled in May and our July 21st appointment was his first opening!!!  My day on Wednesday will look similar except the client meeting is in Lincolnshire in the morning and the doctor is in the afternoon.  Anyway....

Today's appointment with the Immunologist was a follow up to the blood work Finley had done in April when she was hospitalized unexpectedly for an infection in her airway.  It was at that time that we learned about her sub-glottic stenosis and the fact that her airway was 75% closed off.  (We later learned that was NOT a result of the infection - the infection was just a bonus!)  At the time of her infection, the lab initially said her culture came back positive for Staph and Strep.  This raised significant concern because of Finley's previous surgical wound infection in her chest after her first open heart surgery.  So the doctor ordered this blood work up with the thought that perhaps Finley has an immune issue (which sometimes occurs with CHARGE).  After the bloodwork was done, we ended up getting a call from the lab saying - oops - the culture was positive for Strep only - not Staph (which was actually the biggie).  And so we went on our merry way with some amoxicillin (once the infection was under control and Finley could breathe on her own again).  At that time, her blood work came back - it showed she had a suppressed lymphocyte count - which wasn't completely atypical since she was fighting an infection.  At that time, the immunologist wanted us to follow up a couple months after her surgery (to ensure the blood she received during surgery wouldn't impact the results) but before her first birthday because they advised us not to allow her to have any live vaccines until this blood work was complete.  The doctor was very pleased with Finley's overall exam today, he had trouble listening for her heart murmur because she had a lot to say to him during the exam and she was chit chatting so loudly - he couldn't hear!  She was an absolute trooper in the lab and actually had to be stuck twice because the first vein gave out when they were drawing the blood.  She wasn't happy (and neither was mommy) but she bounced back right away as soon as they were done.  So what now?  Unfortunately - these are the worst kind of tests - the ones you have to wait two weeks for results on.  And so we should hear something in a couple of weeks.  What does it mean if an issue is identified? Well, since the results of her first test didn't show anything aside from a reduced lymphocyte count, aside from not getting live vaccinations and irradiated blood (if she were to need a transfusion), there really isn't anything they would do.  They might decide a course of prophylactic antibiotics is necessary but she's already on the for her kidney reflux and so we have that base covered.  More to come on that.


In spite of the heat and humidity this weekend, it really was gorgeous outside (bright sun, blue sky, etc.) and so Nate did what every kid wants to do on a hot day - he ran through the sprinkler...



And so did his new toys...


Finley joined us in her pack-n-play on the front porch



And I took her hearing aids out, disconnected her from her feeding pump, and brought her in the sprinkler too.  I am not sure she was too keen on it though - I think the cold water was a shock to her little body and she quivered each time the water hit her.

Rewind to Friday and Arrrrrr!  Pirate Finley had an excellent therapy session and was patched the whole hour.

Finley working with her light box.




And she got her little toesies painted...


So, let us all be thankful that Monday is gone again and we don't have to see him for another week!

An extra special thanks to Grammy for coming over today at 7 am and for helping out all day.  I couldn't not have made today work out without you!!!  THANK YOU SO MUCH!

Monday, July 19, 2010 | |

 

4 comments:

Anonymous said...

Yes - Monday's like that can't be over fast enough! Glad you had fun on the weekend! Finley looks SO good!

July 20, 2010 at 11:32 AM  
Annie Cue said...

Hey Tracy! Just wanted to add to your count...I read it every week when I'm at work! Shh..don't tell my bosses, but it's the only free moment I can get to read it thoroughly(which I like to do) with out two kids yelling at me when I'm at home :-) Hope the blood results come through the way you want them. See you soon!

July 20, 2010 at 3:19 PM  
Lynne said...

Tracy-you are an amazing super mom!!! I am glad Monday is over for you! I love the pictures of Finley and Nate.

July 20, 2010 at 6:27 PM  
Sylvia said...

Wow - what a day you had on Monday. I agree with Lynne - you truly are an amazing person! You always seem to be cool, calm and collected. What an inspiration you are.

July 21, 2010 at 8:43 AM  

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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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