I knew when I started this little blogging challenge there would be ups and downs but holy moley...so soon?
Oh...I forgot. I am Jonathan and Courtney's Mama and Jerry's wife. Life here at Chez Lenaburg is never boring. I dream of boring. Boring sounds like absolute bliss.
Tuesday night all was well. Miss Courtney and I had just finished watching the Gibster on NCIS and she had taken over the couch while I got her bed ready for night night time. She was laughing and having a grand old time hanging out among the pillows.
We read bedtimes stories and put her to bed, said our prayers, gave kisses and hugs, turned on her monitor and turned out the lights. She was smiling when she went to sleep.
Four hours later we were in the van transporting her to Georgetown University Hospital's ER after she had three cluster seizures within thirty-two minutes. The first lasting between 6-7 minutes and causing her lips to turn blue. After coming out of that one she didn't respond to either Jerry or myself. She went through two more each lasting 3-4 minutes and she was having trouble breathing. We knew then we would have to go.
We called the Neuro after hours service and the Doc on call agreed with us and actually told us to call the ambulance. She was not actively in a seizure at that point and we knew that the EMT's would take her to the closest hospital, where there is no pediatric neurologist on call. This would force us to have her privately transported later.
SO we decided to skip that step, and we took her into GUH ourselves. She seized once more while in transport but she handled that one without turning blue. We arrived in 35 minutes and our first little miracle occured. There was NO ONE in the ER waiting room. NO ONE!! That is something that I have never once witnessed. A clear ER waiting room. SO they took her right back and the fun really began.
The ER team spoke with her neuro Doc and it was decided around 3 a.m. that they would admit her since they wanted to do further testing. She was still having some petit mal seizures and they were hesitant to give her Adivan since it lowers her blood pressure so dramatically. So, I sent Papa home to sleep and Miss Courtney and I headed up to the Pediatric Ward for another 12 hours of fun.
There were blood tests and the requisite two hour EEG. There were conferences with the Peds Team and the Neuro Team. Neither was happy to discover her seven pound weight loss. We are still waiting for some results from the Gastro consult while we were there. In the mean time we need to bulk our girl up big time.
As far as the EEG results go...those weren't spectacular either. Apparently my sweet daughter is having many more seizures than we are catching. There were lots of spikes and petit mals on the EEG and I will admit that was very disappointing for this Mama to hear. Courtney has been so very happy and doing incredible things these past seven months since coming off the Depakote. I had hoped for better results.
After all the test results were in, the team thought it best to let us go home. There was nothing more they could do for her. We discussed increasing her seizure meds to try and cover these new spikes but our neurologist is out of town until Sunday, we opted to wait and see him on Monday to get his opinion before making a decision.
Home we came, stopping for a latte and a cupcake for Mom on the way. Today the name of the game was sleeping for both of us. Trying to sleep while in the hospital is a fighting battle. I am always so very happy to see my own shower and bath after one of these stays, even as short as this one was.
So what to do now? Miss Courtney needs to gain some serious weight and on Monday we will speak with her Neuro Team and make a decision about increasing her seizure meds. With that there may be some changes in store for my girl. None of which I am happy about. With any increase of meds come risks and challenges to the other organs and all of that has to be considered and weighed carefully.
My Courtney has the inner strength of a lion, but in actuality is quite fragile physically. Her immune system is stronger these days but still severely compromised. We have to be ever vigilant and consistent with her diet and vitamin supplements to help keep her well. Obviously something isn't working since she has lost so much weight. So it's back to the drawing board once again.
Like I said, boring is not how we do things here. Little did I know that this little blogging project would become such an important part of my coping over the last 48 hours. So, what could I possibly be grateful for in the middle of this insanity?
Oh so many things my friends...so many blessings...
#1472 - #1491
** the efficiency of the ER room staff
** the smiling faces and gentle care given to me and my daughter by Lindsey, Kaite and Trisha...the very best nurses one could ask for
** Doctors willing to come in on their day off to check on one of their patients
** late night texts from friends who gave up sleep to pray for my girl
** facebook messages and emails filled with such love and encouragement
** all those who sacrificed on our behalf offering their small sufferings up for us
** my mother, who dropped everything to check in on her eldest granddaughter
** my husband who did not give one "Stalin" look to any of the floor staff. He even smiled a time or two (miracles people...miracles)
** finding out that your husband, who is a furloughed contractor with the government shutdown, will be allowed to use his vacation time so we get paid.
** being able to pay bills on time
** hot coffee and a snickers bar at 3 a.m.
** a new season of television shoes waiting on the DVR for those late nights I know are coming
** making cookies to send with friends who are visiting their son at college
** writing letters and sending encouragement through the mail
** reading stories to my beautiful daughter on my OWN sofa
** shopping for a two year olds birthday gifts
** getting new books in the mail to review
** knitting a Christmas gift
** listening to my daughter humming while going to sleep in her OWN bed
** knowing that whatever happens, YOU will be there to pray and lift us up
Labels: #1000 Gifts, 31 Days of Gratitude, caregivers, catholic family life, Courtney's World, special need parenting, special needs children