Tuesday, December 21, 2010


Last Wednesday Hannah had surgery on her arm.  What a time we had.  Things didn't go completely like we had planned (but then again... when does it ever???)
We arrived at the hospital, same day surgery, at 11 am.  Of course, she was fasting, and not happy at all.  I will NEVER, NEVER, EVER again be "add on" status.  ever.....  It was one of the longest day of our lives.  The surgeon was done with his afternoon surgery at 4 pm.  Still waited... and waited... and waited some more....
At 6:30, Same Day Surgery was closing.  We had to go somewhere.  Dr. Ortho wanted us to stay in a "holding" area, so we were as close to the OR as we could be.  As we learned, the surgeon was ready, the OR was ready, but there was no staff...  How can they have THIRTY-TWO OR rooms and not enough staff??????  SOOOO frustrating.  About 6 pm I requested them to give her fluids in her IV that she had placed in her arm, ALL DAY... Hannah was dehydrated.  Her poor little eyes were sunken in.

FINALLY at 8:40 PM, they came in to take her to the OR.  unbelievable.... truly.

Her surgery itself, went great.  It took about two hours.  He placed a pin (rod) in only one bone (the other one had soft bone and had actually started healing.  (We had decided to put a long arm cast on her after surgery so she would have more protection).  He felt the cast would be enough to help the smaller bone heal.  I was very much surprised to see the rod goes from her pinky finger to her elbow.  I had no idea it was going to be that long.  So she will wear the cast for 6 weeks.  Then she will wear a removable cast for 5 more months.  In June or July, Dr Ortho will go back in to remove the pin... Then she will have physical therapy for 3 or so months.  The way I figure, that will take us right back up to Thanksgiving!!!!  Who knew this would be a year long process????

Post op was crazy...  Hannah normally handles anesthesia well, as long as they don't use gas (which they didn't).  She woke up too soon after surgery and was really having a rough time.  She wasn't able to keep her O2 saturations up.  They started her on her BI PAP and added in oxygen. 

We finally got up to her room at 1:30 am.  We were on a trach floor so the respiratory therapists(RT) were right there... We had a WONDERFUL RT!!!!  Tera was sooo good to Hannah.  There wasn't anything she wouldn't do for our girl!!!  Thanks Tera, we appreciate you more than you will ever know!!  Tera continued to wean her oxygen down through the night.

By 8 am the next morning, Hannah started swelling and turned very flushed in her face.  Then she started itching.  They called in the dr.  He felt like she was having an allergic reaaction to something they gave her during surgery.  We will never know what that was....  Then about 1 pm, she started to have "wet lungs" and wheezing.  ugh  Hannah is not a wheezer....  We started breathing treatments.  We think she may have aspirated during surgery. 

Late Thursday afternoon, Hannah seemed to turn the corner and started feeling better.  We spent another night just to be sure her O2 sats were staying up.  They did.  98% all night!  So, we were able to go home late Friday morning.  yay!!!  It was quite the surgical experience....  She usually never has these issues with anesthesia.  I think maybe she was in deeper sedation and the longer surgery caused some of the oxygen issues.  still not sure.  It was really scary though. (what scared me the most when Hannah woke up in recovery, the very first thing she said to me was... "MOM, I CAN'T SEE... I CAN'T SEE!!!!"  WWWHHHAAAATTTT???????  Then she said, "MOM, I HAVE DOUBLE EYES, I HAVE DOUBLE EYES!!!!".  Then I knew she was having double vision.  whew.  That'll scare the poop outta anyone!!!

She rested all weekend and is doing so well.  It's weird to think that with that big ol rod in her arm she is virtually pain free!  (she hurt so much the first 3 weeks...)  It's finally stable.  Her bones aren't moving all around anymore.  Healing has begun!!!!

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Beautiful Hannah...

How this journey started....

Hannah was born prematurely at 34 weeks gestation. She was a relatively healthy preemie; initially having difficulty maintaining body temperature and needing to grow. She weighed 4 pounds 9 ounces at birth. When she was four months old she began to drool, non stop. We were told the first year she was "teething." At 18 months old, we really started searching for reasons of why her shirt was always soaking wet. We saw various specialists who always sent us to another specialist, saying "everything looks okay." She spent years in oral motor/feeding therapy to help her not to drool. It wasn't until she was four years old and in preschool that we started to get some answers. Her preschool teacher commented one day that she wasn't reponding when her name was called. I took this information to her pediatrician who then orderd an EEG, "just to rule it out." Much to our shock and amazement, the results showed, she was having seizures. That is the day our journey REALLY began. Once she began taking seizure medication the drooling almost stopped completely. (She will still drool to this day when she is having seizure activity). Since then, it has been a roller coaster; countless medications and medication changes. She has never really reponded well to any medication.

About two years after she was diagnosed with epilepsy, the doctors noticed that her blood pressure was running high. After many tests, she was diagnosed with hypertension. We still are not sure why, but her cardiologist feels her blood vessels are thicker than normal.

About this same time, we also began looking into why Hannah was such a horrible sleeper. She would thrash, talk, move every which way, during her sleep. The sleep studies revealed that she has alveolar hypoventilation sydrome, which means she has too much carbon dioxide in her system when she sleeps. To help this, she wears a BI-PAP at night. This has been monumental in giving her more effective and quality of sleep.

Every day is a challenge for Hannah and our family as a whole. Blitzen has been an absolutely wonderful addition. She calms herself sometimes just by petting and loving on him. He has been trained in behavior disruptions and will sometimes be able to stop a meltdown from getting out of control.
It has been extra hard on the whole family since daddy is deployed to Iraq. He has been gone since January 09 and will gone until Jan 2010. We get to talk with him by phone and on the web cam; which is nice, but not the same!! Blitzen has helped to make his absence go just a little smoother....