Jan 22, 2009

Livie's little hospital stint

Livie's been having a few problems lately, and Tues night she had a really bad episode that just suddenly came on out of no wehre, she couldn't talk, walk or see...she couldn't even function. It brought back all those memories from when we were at Primary's after her brain surgery...she was just like a little vegetable again.
Then her breathing started getting really labored and I couldn't get her to wake up...

I was definitely freaked out because I don't know what brought this on or how to get Livie 'back.' After Livie has seizures, she has a hard time coming back to and functioning normal, but I was right by her and I never saw her have a seizure. And this was far worse than I'd ever seen it before.

I called Livie's pediatriacian and he said to get to the ER ASAP. So off we went, back to the hospital. Livie was comatose/vegatable like (no mobility, shaking, sweating, can't even form a sentance, let alone a word, eyes can't focus and she keeps going in and out with really labored breathing) We kept trying to wake her up, to no avail. The docs were pretty stumped. The only things they could think of were that maybe she had a bad seizure- not like her usual ones and thats why she was having such a hard time (even though I never saw her have a seizure) or she had a drug overdose (from the dosage being too high on her seizure medication), or she had a stroke (she does have a history of blood clots). I'm definitely freaking out at this point. All we can do is wait...

After 7 hours of that Livie all the sudden opens her eyes, looks over at me, smiles and says "Mommy!"
Just like that and she 'woke up.' I know it was only 7 hours, 7 loooong hours, but I sure missed my Livie Bug!!!!
The thought of her staying like that forever....well, lets not even go there.

I was so happy to finally see recognition and awareness on her face! Such sweet relief!

So Livie ended up spening the night and next day at the hosptial. (I'm thinking she missed the awesome ER and 6th floor nurses there at Portneuf. They really are great nurses and so good to her.) I told her she doesn't need to have any more episodes, we'll just stop in as visitors, not patients, and see them instead! Hopefully she agrees to this! (;

No one can figure out why Livie had this big episode. With all the brain truama she has had, its hard to diagnose what causes what. One concern is her seizure medication. She is on a lot higher dose (of trileptal) and too much can actually cause a seizure and problems similar to this. So if anyone has any advice on seizure meds I would love to hear it.

We are happy to be home. Its taken Livie a little while to bounce back, she is still not 100%, the doctor said it might take a few days, but she's getting there (:

Once again I am reminded at how lucky I am that Livie has come out of all this alright.
And for this sweet, little girl in my life!! (:

Jan 11, 2009


Alyvia has been having some 'episodes' lately where she'll just all the sudden loose her vision. She'll be fine one minute and then the next she can't see anything. At first it just happened once, but then it started happening more and one day it happened 5 or 6 times throughout the day...I was definitely bothered by this and so were the doctors, especially since Livie has been having more seizures lately. The doctor's biggest concern was whether or not the tumor was growing back or if there was scar tissue from where they removed the tumor that was causing these problems. My biggest fear is the tumor coming back. So when Livie started having these problems I was worried sick about it...
We headed down to Primary's and Livie had another MRI. She has to be put out with general anesthesia (GA) for an MRI instead of just regular sedation because for some reason the regular sedation makes her stop breathing...which isn't very fun! ha.

Livie did really well this time with the GA, this was her best time yet, I was so happy things went so well...and then I had to talk to the radiologist about what he saw on the MRI, I was SOOO nervous.........
He said the MRI looked unchanged since her last one and that there was NO sign of a tumor. She does have scar tissue by the cerebellum, but it is minimal. So in a nutshell, Livie passed!! The MRI looked good! PHEW!!!! I am so happy and relieved that there's no tumor!!!!

Since Livie has been loosing her vision, though, we had other appts throughout the day and one of the appts was with an opthamologist. He tested Livies eyes and said they are...... GOOD!! He said they appear healthy and she see's as a normal child should!! Another PHEW!! Especially since Livie did have cortical blindness when we came home from the hospital a year ago. She had her eyes tested then and they did not find any permanent damage (thank goodness!) but they were slow to respond and there was some misfiring caused from all the brain trauma she had...

So I was REALLY happy and thankful this weekend when Livie passed her MRI and her eye tests. What a blessing (:

Because no one knows why Livie is having the episodes she's been having, her neurosurgeon said we'll have to follow up with a neurologist, but he said her brain scan looked good (Yippie!)He can't explain why she looses her vision except that perhaps with all the brain trauma Livie suffered, sometimes her brain still misfires and causes these things to happen. The brain is so complex that who knows?? What I do know is that I'm SO grateful Livie is doing as well as she is and that there is no sign of a tumor. I know the tumor could come back at any time, I hate having that nagging thought in the back of my mind, the what if's. But I guess none of us really know. Life is a precious gift that, sadly, can be taken from anyone at anytime. We have to live each day as it comes and I am definitely very thankful for each day I have with my Livie Bug!! What a wonderful start to 2009, hopefully this is a sign that this year is going to be a good, healthy year for us! (:

**I learn more and more about brain tumors everyday. When we first found out Livie had a tumor in her brain stem I hardly knew anything about brain tumors except that they were bad. I have since learned a lot more about them and thought it might be interesting posting some facts about them...

First, what does the brain stem do??-The brain stem is in charge of all the functions your body needs to stay alive, like breathing air, digesting food, and circulating blood.Part of the brain stem's job is to control your involuntary muscles - the ones that work automatically, without you even thinking about it. There are involuntary muscles in the heart and stomach, and it's the brain stem that tells your heart to pump more blood when you're biking or your stomach to start digesting your lunch. The brain stem also sorts through the millions of messages that the brain and the rest of the body send back and forth.

*Livie's tumor was located in the brain stem underneath the cerebellum, when the neurosurgeon operated on it, he said he had to lift up the cerebellum in order to get to her tumor.

**Brain Tumor Facts
About Brain Tumors

-A brain tumor is a cluster of abnormal cells growing in the brain (in Livie's case, the brain stem) caused by cells reproducing themselves in an uncontrolled manner.

-There are more than 120 different types of brain tumors; some are malignant (cancer), many are benign (non-cancerous).

-Brain tumors are difficult to diagnose; their symptoms often mimic other diseases.

-Brain tumors are the leading cause of solid tumor cancer death in children under the age of 20.

-Standard treatments include surgery, radiation and chemotherapy.

-Because of their location, most brain stem tumors are inoperable. **We are SO lucky that Livie's was able to be operated on.
-Most brain stem tumors are malignant (cancerous)

-The cause of brain tumors is unknown.

-Often, the damage done by brain tumors is due to their size. Because the skull is bone, it cannot expand to make room for even a small mass growing within it. As a result, the tumor presses on and displaces normal brain tissue. This pressure may damage or destroy delicate brain tissue. Many of the symptoms of a brain tumor are caused by this pressure. Sometimes, a tumor may cause blockage of fluid that flows around and through the brain. This blockage can also create increased pressure. **The very first time we saw Livie's neurosurgeon, he said that she had so much pressure from the tumor blocking her spinal fluid that he would have only given her 2 more weeks to live before she would have died from it.

-A benign growth may become malignant (cancerous). In some tumors, a lower-grade tumor may recur as a higher-grade tumor. **Livie's tumor was low grade.

-Tumor grade indicates the degree of malignancy

-Brain stem tumors make up 10-15% of tumors

-Operating on the brain stem is very risky because it controls so many functions

-More knowledge about brain tumors has been gained in the last ten years than in the past hundred years.

Jan 5, 2009

Jingle Bells

We had a good Christmas. Livie was so excited that, even though, we were at Grandma's house Santa still found us!

Christmas Eve par-tay

Livie's first reaction after she came upstairs and found all the presents Santa left. She kept saying, "I just can't believe this!!"

We always get matching pj's from Santa :) And of course, while we stayed at Grandma and Grandpa's house we got to help out with farm chores!!

I'm going to miss the Christmas spirit that December brings...and just maybe I'm also going to miss threatening Livie that she better behave or she'll get a lump of coal from Santa, haha. I know, thats horrible of me, but it totally worked on her!!
It was a lof of fun watching Livie get excited about Christmas, it really was like a first Christmas for her and it turned out to be a great one!!