Viruses, parties and work...oh my!

I've been neglecting this blog of late for a few very good reasons.  I was well intentioned to update over the weekend and nearly the entire Roth household fell ill...with the exception of Mike of course who never seems to get sick.  Which, as some would say is a good thing because the complaining associated with him being sick (his not mine) would be enough to drive me to the edge.

Nate woke up overnight Thursday in to  Friday vomiting, seemed better on Friday and then woke up with the same Saturday morning.  I started to get sick Saturday night and ended up spending the better part of the evening - from about 8:30 pm until about 2 am in the bathroom vomiting.  I would get a 5 minute break or so to lie on the bathroom floor and then it would start all over again.  I am serious.  I NEVER left the bathroom.  I was trying to gauge time by what I could hear was on TV.  I contemplated whether or not I should go to the hospital.  It was brutal.  By far the sickest I can ever recall being.  And then by the time I finally did go to sleep and woke up in the morning, my wonderful husband who had taken all of the overnight feeds told me that Finley had thrown up a couple times overnight.  When that continued in the morning, I switched her feeds to an apple juice/pedialyte mixture and she stayed on that until Monday morning.  And did great.  Needless to say, we've all been on the mend.

And then unfortunately all of that ick in the house means nothing got done on the weekend in preparation for Nate's birthday party this weekend.  That means lots of furious running around in the evenings this week after work trying to get that done.  But, it will get done!  And today starts the first day of Nate's three day birthday bonanza - treats at school with his class, tomorrow is our traditional lunch at The Choo Choo restaurant in Des Plaines (Finley will make her inaugural visit!) and Saturday is his party!  Two other very happy birthday's go out to my dear friend Gina (8/17) and my momma (8/18) - HAPPY BIRTHDAY LADIES!

Finley and her dolly - she LOVES to chew on dolly's hair!
Our big news of the week is that Finley went to the endocrinologist on Tuesday and we are making more progress on that front!  Our big girl is weighing in at a whopping 22 lbs and 9 ozs these days and is at the 75th percentile for weight!!  WHOO HOO!  We've also been able to cut the polycose in her milk down even further - we started at 3 tsps per 90 ml, then went to 1.5 tsp per 105 ml and now we are at 1 tsp per 105 ml.  She has been stable on that for the last two days with blood sugars being GREAT and so now we are even going to go to every EIGHT hour blood sugar testing!!  This is a huge accomplishment from where we started - every three hours!  We hope to further wean the polycose within the next couple of weeks and the endocrinologist has big hopes that in the next 6 weeks or so that maybe we can start doing some bolus (large amounts less frequently) feeds and get Finley off of the 24 hour continuous feed!  She is cleared to eat really anything (puree consistency or very easy to mash) food wise and is doing great on that front as well.  Today we are going to start replacing one of her feeds with one of just apple juice, so we can get her really hungry and hopefully begin to feed her an entire meal of baby food a day!


The other big news - Nate finally got a haircut!  After more than 8 weeks since his last one (since he had a melt down the day he and Mike were supposed to go) he made a trip to the barber.  And my little man came home with his first buzz-ish cut.  It is MUCH shorter than normal - and at first I was sure if I liked it, but after a couple of hours I decided I not only liked it - I LOVED it!  And as a bonus, Nate moved while Joe was cutting it and so he has a very 80's line shaved in one side of his hide!  C-L-A-S-S-Y!

Finley playing peek-a-boo!  She LOVES covering her face with stuff like this!





Today me and my traveling money jar are hitting the office in hopes to fill-er-up even more.  We've been a little slow on collecting change and there isn't much time left so I am hoping that my visit in the office today will yield much generosity!

Hope you have a great day!

Nate LOVES to lay in the crib/pack-n-play, etc. with Finley.  This is them outside!

Thursday, August 19, 2010 | |

 

2 comments:

mary nunez said...

SO HAPPY FINLEY IS DOING SO GOOD!! and Nate looks great with that haircut I love it! I'm sorry you guys were sick though but thank god you feel better stomach bugs are horrible.hugs

August 19, 2010 at 1:28 PM  
Unknown said...

Glad you are all feeling better! GREAT news about the polycose weaning and food eating!! I do like Nates haircut too :)

August 19, 2010 at 6:40 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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