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April 14, 2003

“Children are the most wholesome of the human race, for they are the freshest from the hands of God”  C.S. Mott

Meghan had her tracheotomy performed on April 1st.  The doctors anticipated her coming off of the ventilator one or two days after the tracheotomy, but Meghan needed more time...

The doctors tried to wean her from the ventilator on 4/3/03 by putting her on a "trach mask," which gives a steady flow of oxygen, but no pressure support.  In other words, she would have to inhale and exhale on her own.  She did okay for about twenty minutes, but then began "paradoxical breathing."  Basically, she was fighting for every breath again.  They tried this several times in the following days-to no avail.  The doctors thought that because of Meghan's weakened condition coupled with several weeks of breathing difficulties, she would likely needs time to rest.  Thus, they put her full ventilator support for the next several days.  Ellen and I fully agreed.

Five days after her tracheotomy, Meghan began to run a fever.  The doctors thought that she may be getting an infection-possibly the beginning of pneumonia.  They started her on antibiotics and we all prayed a little harder.  Meghan was very upset most of the weekend and cried most of Sunday morning when her fever started.  Then, on Sunday afternoon, she had a  seizure.  Unfortunately, this was nothing like the "seizure like" spells that were really apnea events-this was a classic seizure (body shaking, staring off, non-responsive, etc).  The doctors stopped the seizure within minutes and assured that Meghan was okay, but could not explain why she had it.  Ellen and hit another low on our emotional roller coaster ride.  We thought that seizures were out of the picture, but now they were to enter Meghan's world once again.

They gave Meghan a "loading dose" of Phenobarbital to get her blood level high enough to prohibit future seizures.  The Neurologists ordered an MRI to try to find the reason for the seizure.  They explained that there might be "demyelination of the brain."  The MRI would show if this was occurring.
The neurologists also wanted to do a lumbar puncture (spinal tap) to test for other infections that may cause a seizure.  Ellen and I hit another low wondering when these major set backs would be put behind us...We feel as though we are running the high hurdles up hill with no end in sight. Meghan was extremely cranky on the day of her MRI-she had several blood draws, the lumbar puncture, new IV lines and the MRI done on the same day.   Later that day, the neurologist team came to discuss the results...We were thrilled to hear that there was no irregularities on the MRI!  They compared the MRI from several weeks ago to this MRI and there were no changes.  The spinal tap showed no infection or other irregularities!  They concluded that Meghan likely had the seizure because of the Phenobarbital came out of her system too quickly or because of her fever-or a combination thereof...To avoid the seizures, we will keep her on Phenobarbital for another six months or until she fully recovers from her Guillian Barre'.

Thankfully, the day after the MRI, Meghan's disposition completely changed. I dubbed April 9th as "The Day of 1000 Smiles" because Meghan was beaming all day!  She looked so much better and could not smiling.  She was happy to see everyone that visited...grandma(s), grandpa, Lauren, Shannon, aunts, uncles, nurses, friends...she spread her happiness to everyone!  Ellen and hoped that her radiant attitude would continue through the weekend...

As of today, April 14th, Meghan is on her sixth straight day of happiness!  She has gotten used to the tracheotomy and all that goes with it (several suctionings per day, tracheotomy cleaning, gagging sensations, etc) and is getting used to the tube feedings.  We still have many challenges ahead.  Meghan needs to learn to take a bottle again (she has had tube feedings for the past several weeks).  The speech pathologist will work with her until she gets her suck and swallow skills back.  If that does not come back, she will need a "G" tube-which is a hole in her stomach which allows us to feed her directly through a valve that is surgically implanted in her stomach. 
Another issue is that we will likely need to take her home on a "laptop" ventilator.  This will require us to go through extensive training and Meghan to stay in the hospital for a minimum of 4 weeks to a maximum of 6 months.  After that, home health care by RN's will be required. 

Again, thank you for your continued prayers.  Meghan will get better but she needs the daily prayers.  I will update the site later this week...Until then God bless you all!

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