Thursday, November 29, 2007

Surgery Consult

Today we saw the Pediatric Surgeon at Women's and Children's hospital. We explained Abby's seizure situation and her extensive medical history. He was a very nice man and agreed she needs the VNS implant soon. He shared some of his experiences and told us he implants about 1 child a month! This was more than I had expected.

Abby's placement surgery is scheduled for December 10th, nice and early at 7am. As much as I want to stop these nasty seizures, I never enjoy the process of surgery. This will tip Abby's surgery number to 13. Every time I'm told to fill out those forms at the dr.s' offices I have to rehash all the difficult experiences she has endured. The surgery, the vent time, the infections, blood transfusions, brain injury and diagnosis'. Then I watch as they point out all the scars, trying to make sense of it all. Never something I enjoy doing.

But, as it is, we are ready for this to happen. Now that our girl is even more drugged after adding a third med this week, we look forward to yanking her off of them as quickly as Dr. M will allow. Looking into her little eyes I can see a haze clouding over her sweet, hiding personality. I'm ready to see my girl clearly again and move forward with the normal things of life.

Will life ever settle down to normalcy? I don't think I will wait any longer for that to happen, but will stumble ahead while I beg the Lord for His mercy and grace. He promises that He will equip us with every gift we need for this life... I just need to dig deeper and proclaim that His promises are always true.

Josiah worked so hard the other day helping mommy rake leaves outside, he forgot to finish his lunch!! It was so cute I thought my heart would burst!

Thursday, November 22, 2007

EEG Results

We heard from the neurologist about Abby's 24 hour EEG results. It sort of caught us off guard a bit. During the time Abby wore the electrodes she never had a seizure (that we saw). We were expecting to have to repeat the test in order to catch one of her many (usually frequent) seizures.

The nurse said Abby’s results were "abnormal," which isn't different from her previous tests. She told me it recorded "frequent spikes in her brain waves, indicating seizure activity." When I mentioned that we never actually saw any seizures during the test she told me that Abby is having seizure activity even if we don't see them.

So basically Abby is having between 5-30 seizures every day, in addition to those we can't see. We never imagined this could get so out of control. It's very difficult seeing her seize and then get so upset, knowing she must be scared and confused.

We go to see the surgeon next Thursday to discus the VNS implant.

We spent last weekend in Knoxville with our families. My Aunt Jodie took some precious pics of Josiah outside in the leaves. Too cute!

Friday, November 16, 2007

Fall colors

Another cold day in November. My favorite time of year. I love the colors on the trees and the cold wind.

The kids are getting over some sort of stomach bug. Abby went back to school today. I've been communicating with Mrs. V (Abby's teacher) about her seizure activity and subsequent lethargy and long naps she's been taking. Today they counted the startle episodes (myoclonic startles) that Abby had while at school... 24! No wonder the kid is knocked out and irritable.

She had 7 grand mal seizures Thursday. After she started having stomach symptoms and fever it explained the sudden increase. She actually had 3 of these during the night, which worried us. I kept a very close watch on her fever this time and treated it quickly.

We have an appointment with Dr. G (a general pediatric surgeon) about the Vagus Nerve Stimulation implant on November 29th. This will give us a chance to find out more about the procedure and to ask more questions.

It's getting to the point where we feel forced to do Something!

Josiah is getting so big. He grows more every day, and adds words to his vocabulary. He loves Abby and that is what we need to see these days.

Friday, November 9, 2007

The 24 hour EEG

Abby endured another test this week. The difference between this test and all the others is, we had to take this one home!

Numerous electrodes were attached to Abby's head, measuring and recording brain waves for over 24 hours. We were hoping it would "catch" all the seizure activity she has been having, both the grand mal and the newer, startle seizures. Although the previous week Abby had over 15 seizures, she did not have any while she wore the electrodes, except for a possible startle episode.

Now we wait for the neurologist to review the information.

A story in pictures...

Friday, November 2, 2007

Love - Hate Relationship

Abby has a long standing relationship with tubes of all kinds. Endotracheal tubes, IV tubes, oral gastric and nasal gastric tubes. They have given breath to her lungs, medicine to her blood and food to her stomach. Once Abby's reflux battle kicked in full gear we turned to a gastrostomy to feed her.

Yesterday we were introduced to yet another tube... the Gastrojejunal tube. As much as we've been dragging our feet on this one, Abby has been suffering through every feeding. We have exhausted every medication and several, special formulas. We even tried an extra special diet of blenderized whole foods. Nothing brought the relief she needed.

Now we have a pump, feeding bags and IV pole following Abby every where. Soon I'm sure it will become second nature to pick up the pump and tubes along with our girl. In the mean time, we are trying really hard not to trip over or step on her tubes!

It's new for Abby too. It has made her tummy very upset. Something new; more changes. We only wish we knew what she was feeling so we could better anticipate her needs. She acts hungry, but we can't feed her the way we are used to.

Lord, please help Abby get used to this new tube more quickly than we do, so that her body can heal.