Sunday, August 31, 2014

inpatient...


It's 5:15 a.m. and sleep eludes me. Miss Courtney was admitted to Georgetown at 3:30 this a.m. and after running a full course of her IV anti seizure meds, she is still having breakthrough seizures. 

The Docs ain't happy and neither is this Mama. They have not found the right drug combo yet to get them to stop. I am not all that sure they will to be honest. So here I am, next to her bed, no sleep on it's way. 

The plan? I have no idea. Truly. They want to do another EEG study and they will probably change her med protocols, that is after they actually stop the seizures. If they can. Not really seeing a lot of hope for that. 

Pray we do what's best for our girl, no matter the outcome. I just don't want her to suffer. I will do my best to update this space as I can.  

Thanks for holding us in prayer. 

Saturday, August 30, 2014

we need you NOW...

OK my friends...we are out of options...we are taking Miss Courtney into Georgetown ER. She has been cluster seizing since 11:39 a.m. and no amount of medication has been able to stop it. So now we get out the big guns and if be God's will, we will be back home soon. I really need your prayer support. I am at the end of my comfort zone here. 

Thank you 

i will never, ever, ever, ever be ready to let her go...

...but I will when God decides it's time and not one second before. Until then there are songs to sing and snuggles to give.

Go NAVY!! Bring on football season!!

We are four days post surgery and unfortunately Courtney's seizures have returned. She is doing very well otherwise. She is eating well and sleeping well. As I was holding her last night, she went through three grand-mal seizures in a row. It was tough for this Mama to look down at her girl suffering through these nasty seizures and try and keep it together. This morning we have had two grand-mals and many, many of her smaller seizures. 

Jerry and I made some tough choices this week. We decided since we have signed a DNI/DNR for our daughter we will not be running to the ER anymore for seizures. Not unless she is in an intractable seizure that we cannot stop at home. Then we will prayerful consider it. 

Jerry pointed out to me last night as we were discussing what to do, that we needed to make a decision about what we wanted Courtney's final moments to look like. Do we want to be in a hospital surrounded by strangers or here at home surrounded by love at all times? 

We chose love. Always love. 

This doesn't mean that Miss Courtney is going anywhere anytime soon. This just means that as her condition worsens and the seizures come more often, we will be dealing with them here at home as best we can. Now if she shows signs of illness other than neurological, of course we will get her whatever care is necessary to help her. It's just the seizures we are talking about. 

Everyday with our daughter is a gift. We have done what we can do medically to help her. The rest is in God's hands. This does not get any easier to type but I will keep doing it because I believe it. 

Courtney belongs to God. We just get to borrow her for a little while. 

Friday, August 29, 2014

it's all kelly's fault...

So a few weeks ago, Kelly @ This Ain't Lyceum challenged the world to a lip synching contest. Well not the world per say, but Mama's who stay home and care for their littles. In my case, my sweet Courtney. You know we all need to just break out and dance from time to time. Or so I am told. 

Hot off my mega awesome performance at Perry and Melissa's wedding last weekend, I decided that the time was now. For those of you who have witnessed my karaoke prowess, I know that this will not shock you. 

I took her up on the challenge. I did. Not only that, I am in my PJ's. Heaven help those who witness this fierce rendition of "It's All About the Bass". 

**warning** this may cause blindness or frighten kitten or small puppies. There ate two bad words. One is bi*@#$ and the other is sh@*. You may not even notice them for the awesomeness of the dancing will take your breath away or make you want to vomit. Either way...you have been warned. **warning**

Kelly I blame you entirely if the men with the white coats show up at my door. Actually, that sounds nice. I could use the rest. 

Ladies and gentleman...I give you a white girl dancing...who ain't no size two...





trim.9E557184-241D-413F-B466-E2E913C23A6C from Mary Lenaburg on Vimeo.

Thursday, August 28, 2014

coffee for your heart #23 - just do your best with what you've been given...

It has been a month since my last video. So sorry to drop the ball like that. As you know things have been a bit dicey around here with Miss Courtney. She was sleeping this morning so I thought I would take the opportunity to just give a little update and hopefully some encouragement as well. 

Blessings and grace to each and every one of you who stop in and say hello. Know that you are prayed for every day. 

Hugs, 



Coffee for Your Heart #23 - Do Your Best! from Mary Lenaburg on Vimeo.

Wednesday, August 27, 2014

post surgery...day one...

She was smiling but she wouldn't open her eyes...argh!

Well here we are post surgery day one. So far so very good. Miss Courtney has been the model patient. Truly. She hasn't gone after her surgical site which is on the top left side of her chest. She has left it alone, no tugging or hitting it. Miraculous if you ask me. 

She is taking all her meds like a champ. She is on a new antibiotic for the next seven days as a precaution. She has only had one small seizure today which is again, flippin miraculous. 

She is still sleeping most of the day. We hope to be able to back off her seizure meds a little at a time later this week. We had increased them to cover her seizure threshold while we were waiting for the VNS to be replaced. Now that it's been done we can back off them a little. Hopefully the seizures will stay at bay. 

What happens now? Well we see the Doc on Tuesday to make sure she is healing well and to check her surgical site. Then we see the Neurosurgeon in a month, to check the VNS and make sure all is well. 

Other than that, the Doc asked that we stay home for the next four weeks to give Miss Courtney the best chance of healing and to give her weakened immune system a chance to strengthen. Also we need her to gain some more weight. We can't start PT again until October to allow her surgery site to completely heal. 

So we will take one day at a time, the same as we always have. We trust in God's plan for our girl. Now that we have done everything that can possibly be done to help her fight her seizures, the rest is up to God.

I have been enjoying extra snuggle time and lots of bedside singing in the last 36 hours. I would not have it any other way. 

I ask for your prayers not only for Courtney and her healing from this surgery, for her strength to fight the seizures, but for me and her Mama and chief caregiver. As a Type A personality being home for so long is a serious challenge for this people person but I know it needs to happen so Courtney has the very best chance we can give her. 

Thanks to all that have so very kindly donated through PayPal and through the mail. We have set these funds aside to be used to pay Courtney's medical bills which are now rolling in daily from her last two ER admissions. In a few weeks the co-pays from her surgery start arriving. YAY! 

Jerry is working his network like a champ to try and find a new job in the next few weeks. This two week lay-off extension is a Godsend, truly. We are entrusting this job search to St. Joseph. 

Blessings to one and all, 

Tuesday, August 26, 2014

#awe



Surgery day began very, very early this morning. Like pre-dawn early. There was a bath to give with special soap. Finding the softest pj's with a button front for afterward. Making sure the hair was braided so it stayed out of her face. Had fresh formula made for the post-surgery tube feedings. The hospital bags to pack for both Miss Courtney and myself. Then the 90 minute drive to the hospital. Registration. A stop at the hospital chapel. Daddy prayed over her. Then off to the surgery center. More paper work. Needles, blood draws, IV's. More Doctor's than you could shake a stick at. Scrubs for Mama. Hospital gown for Courtney. Then the dreaded hand off. God's grace was overwhelming in that moment. Not a tear was shed. I kissed her told her I loved her and that she was a fighter. Then I let her go. A total of 90 minutes from start to finish in the operating room. SHE WAS A CHAMP!! Miss Courtney's blood pressure stayed steady, the implant went in beautifully, no seizure breakthroughs which is just amazing and a first for her. She woke up beautifully in recovery and again her blood pressure was steady. She did so well, so much better than the last two surgeries that after a little pow-wow with the team they decided she could come home tonight. THANK YOU JESUS!! So home we are. Home. Fed. Held. Snuggled. Sung to. Loved On. Back Asleep.

In other news, Jerry has been extended for two weeks at work. Which means his lay-off date is pushed back from Sept. 1 to Sept. 15. This gives him a little more time to find a new position. He is working his tail off to find a new job. Please continue to cover him in prayer. The PayPal is set up to accept donations to cover Courtney's hospital bills and expenses as Jerry faces unemployment. Today's co-pays alone will be at least one full paycheck. So grateful that we get another two weeks of insurance coverage.



Thank you feels trite but that's all my very exhausted brain can up with right now. Thank you for your prayers. For your words of encouragement. For your practical gifts. My heart is overflowing with gratitude and awe at the Lord's provision for this day. He is good ALL the time. He truly is.

Related Posts with Thumbnails