a boy and a girl and a cat and 5 fish...8 fish...7 fish

Wednesday, August 31, 2011

Hannah's Big Adventure

So, many people have been curious what happened with Hannah and her exciting three week hospital stay so here is the story in short (by dad):


Hannah has been a really healthy little girl aside from the occasional toddler cold. On Friday August 5th Hannah was in Tulsa, Oklahoma with her brother, mom, and Nonna. They were there visiting her Uncle Hef and Aunt Katie. Friday and Saturday were normal days where the kids were having fun and dealing with both crazy prairie storms and excessive heat. But that wasn't slowing anyone down.

Saturday night Hannah had a hard time sleeping and woke up a lot. By morning she was weak and was having labored asymmetrical breathing. Matthew stayed with Nonna while Bonnie took Hannah to urgent care. By some fluke urgent care wouldn't take Hannah and she was forced to take her to the Children's Hospital at St. Francis. This proved to be a blessing!

Hannah spent the day Saturday being treated for asthma-like symptoms and by evening Daddy was on his way driving the 600 miles to Tulsa. By morning, Hannah was worse and it was discovered that her CO2 levels were climbing dangerously high and her O2 levels were dropping dangerously low "Acute Respiratory Failure". Sunday she was moved to the Pediatric Intensive Care Unit and about 4 hours later she was intubated and put on a ventilator.

Her blood gasses returned to normal with help from the ventilator. Everyone could then take a deep breath and begin to try to figure out what was going on. She was heavily sedated and underwent a battery of tests over the next week or so. They did two spinal taps, two MRI scans, two CT scans, an EMG, an EEG, and they took 50 ml of blood over a period of a week for diagnostic testing. Everything was normal.

She had a nava catheter in her nose that measured her diaphragmatic activity and they started to notice more and more activity. Once they stepped down the sedation they discovered that her breathing was improving. After two weeks her daytime breathing had improved to a promising point, but her breathing would stop when she fell asleep.

After 14 days at St. Francis we were finally able to get insurance to approve a transport and admission to the Vanderbilt Children's Hospital. It took a lot of fighting and some help from some pretty high up friends at Vanderbilt to get her moved. We still have a lot of thank yous to make for that one.

Bonnie and Hannah was flown by Vanderbilt LifeFlight on a King Air 200 fixed wing plane to Nashville on Saturday August 20th. The flight went smoothly and Hannah was in the PICU at Vandy by dinnertime. St. Francis was great to us, but the standards of care and the resources available at Vanderbilt were refreshing.

Once they had her stable and had familiarized themselves with her history, they began working on Hannah with renewed vigor. Dr Mace, our wonderful pediatrician, had been involved from day one by keeping in touch with us and our doctors and getting Hannah's records to anyone that it would make since to show them to. She was now on hand to help the new attending physicians and neurologists to get the full picture of what was going on.

The doctors decided to repeat the MRI scans and EMG tests. News tests were run and scores of doctors visited Hannah. Still no one was any closer to knowing why she went into respiratory failure. Everyone agreed that she seemed to be doing better.

On Tuesday August 23rd they decided to pull her tube out and see how she does. She did great with her breathing, but she didn't really sleep for the next couple of days. The PICU doctors really wanted to see her sleep well before moving her to another floor, but in the end we decided that the PICU unit was the reason she wasn't sleeping. We got her transferred to another floor with her own quiet room on Thursday August 25th and she started sleeping with healthy breathing almost immediately.

By Saturday she was ready to go home. She is doing great and apart for getting the strength back that she lost from being in a bed for three weeks she is getting back to her old self.

The best that they doctors have is that she had some sort of "Post-viral neuropathy" (such as "atypical Guillain-Barre syndrome" that caused "Bilateral phrenic nerve paralysis" through demyelinating that was specific to the diaphragm.
Any questions?

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