Today was a very busy day. We started with multiple blood draws to take new ammonia level as well as liver enzymes, valproic acid levels, white cell counts, etc...etc..etc..
The big test the Docs wanted done was a spinal tap. They tried last night and because of the anatomy of Courtney's spine, they could not get any fluid. So we had to wait to do it down in Radiology under florescence.
We spent the day waiting and praying and waiting and praying while 500,000 other people right outside my window marched for life. I marched back and forth in our hospital room while my sweet girl slept on and off and prayed for the safety of all those who spoke up today for the unborn and the elderly that have no voice. I prayed for Courtney and the miracle of her life. I prayed for answers to what was happening and why.
Jerry finally arrived after work and he joined in on the marching.
I had no idea that the most difficult part of my journey was about to happen or that the answer we had been searching for would be found in this last effort.
We made it down to Radiology leaving Daddy in the room due to his aversion to needles. Then the real challenge began. Courtney had to be placed in position without general anesthesia due to the Docs concern about her already taxed system. The used a local anesthetic at the insertion sight and the party began.
Courtney hates being on her tummy. She is even more unhappy when someone has to hold her down so she doesn't move. You combine the two with a needle and an X-ray machine and you have Courtney's personal third ring of hell.
As for me, there is nothing more horrifying than to listen to my daughter cry and scream out in pain and discomfort, tears and all. The only time Courtney cries is when she is in pain or scared. I tried singing, I tried praying the "Hail Mary", both of which usually calm her down.
Not this time. It took four attendants and two physicians to do the procedure. She fought the positioning and even caught one of the attendants with her foot.
It was hell...pure hell.
After the procedure, I held her and rocked her and after a bit I finally got her calm. We got back up to her room and began to wait once more.
We put her back in the hospital bed and Jerry took one look at my face and asked what happened.
I lost it.
We had been through nothing but crisis after crisis in 48 hours.
I wept for my daughter and her pain. I wept from physical and mental and emotional exhaustion. I wept because there were still no answers and I had never seen my daughter in that kind of pain before.
I was done.
I wanted to wrap my girl up and take her home.
Home where there are no needles and no reason to cry.
Home where I can sleep in my own bed without hearing the distressed cries of babies who are in pain and other Mama's soft tears in the hallway when they are given bad news.
Home where there are no IV's or hourly blood pressure checks or alarms going off or cots made in the 1940's.
Home...I wanted to go home...
Jerry held me and just let me cry. The nurses gave us privacy. I am grateful for that.
It's funny, I write these words and I feel like such a sissy. I didn't have the spinal tap or seizures, Courtney did.
After I got myself under control and blew my nose about 1,000 times, I just sat with my daughter and thanked god it was over.
Jerry and I talked and decided that whatever came next we would need to think long and hard to consider if we wanted to put her through it. She had been through so much. I was not prepared to put her through any more.
The Attending came in about 90 minutes later and said she had news. She sat and talked with us about Courtney's medical future.
She went through a list -
*Her immune system is pretty much non-existent, so we would need to be careful about exposing her to the general public.
*The dietician made a new recipe for her G-tube formula to help support her liver function.
*There is now a plan to ween her off the Depakote, again focusing on the liver function. If she didn't tolerate it well, then we would stop. Her body can do what it can do.
*Her care has become "crisis management" care. Meaning as things happen the Docs would treat them as an individual crisis, realizing that once one thing goes wonky in Court then, everything else is fair game.
*The results of the spinal tap showed that Courtney has a mild case of Viral Encephalitis, basically a viral infection of the brain. It's pretty rare, but then so is Courtney. She had probably been suffering from this for about a week or so, hence her lethargy and growing liver toxicity. She felt Court was through the most severe stage and she felt confident we were capable to continuing treatment at home.
Wait, wait, wait...we can go home???
She assured me that Courtney was doing very well and slowly coming back to herself. This was a very good sign. At this point, with her compromised system, she was better off continuing her recovery at home.
Home...we were going home...
Just when I broke and had nothing left, God swoops in and rescues me.
Because YOU my sweet readers were there for me when I had nothing left. Your prayers, your encouragement, your simple kindnesses toward me and my family, all of it. You were part of God's SEAL Team. You prayed, you sacrificed, you didn't give up. When my stores were empty, you filled them up.
God answered the deepest desire of my heart. He let me bring my daughter home one more time.
I type this sitting on my own couch in my own HOUSE. Courtney is sleeping in her own bed tonight.
As for tomorrow, everything has changed in 48 hours. Everything will be different and new. It will be challenging but them it always has been.
As for Miss Courtney...she is worth every sacrifice or difficulty.
I know one thing for sure though...you will be there...God will be there...and even when I loose it and give into fear and doubt...it will be OK.
God's got this. He has shouted that loud and clear...through EACH one of YOU.
May His name be praised and glorified now and forever.
We have received many emails and phone calls asking how you can help our sweet girl. With this new round of hospitalizations and major changes in medications, there will be many medical bills to pay. After much prayer and on the advice of dear friends we have decided to place this Paypal button on the blog for now to allow those that feel called to assist our Courtney in this manner.
KNOW THAT YOUR PRAYERS ARE ENOUGH...MORE THAN ENOUGH!!
All of her other needs are being met. Through these donations we hope not have to take on further medical debt. We humbly thank you for your kindness.
Know that we appreciate all your prayers and practical help. We could not make this journey without so many walking with us in love.
Labels: Courtney's World, My Crazy Life