4/20/2010

This past week has been very difficult. On Wednesday, the 14th Taylor started having an abnormal amount of seizures. Her nurse called to inform me of increased seizure activity about mid morning and advised me to call Duke and consult with her neurologist. Within an hour, her seizures got worse. She was having one right after another. They are called cluster seizures. (Cluster Seizures: Two or more seizures occurring over a brief period of time (minutes to hours) but with the patient regaining consciousness between the seizures.)

I came home from work and had to give Taylor a medication called Diastat. (Diastat works to stop seizure activity by acting on brain cell interactions that inhibit the seizure discharges. Diastat is rapidly absorbed from the lining of the rectum and quickly achieves therapeutic levels in the serum).

Even with the Diastat, Taylor's seizures were still coming so I had to take her to the hospital. The doctors ordered blood test, a chest x-ray, and a urine culture. Everything came back fine, so they were a little perplexed to why Taylor was having increase seizures. They consulted with Duke and they said to increase her Valium and send her home. We were to call Duke in the morning and give them a report of how Taylor's evening and into the morning went.

Just as soon as Taylor woke up, she started having seizures again. Duke said bring her in and they would start her on a IVIG. *She had an IVIG back in February when she was having increased seizures.* When we got to Duke, the nurses had a hard time starting an IV on Taylor. Two nurses from the IV team each tried 4 times each to start an IV, but were unsuccessful. Then, Taylor's neurologist tried to get IV access, but was unable to get it either. They decided to give her break and a few hours later they brought in a nurse from the PICU to give it a try. She got it on the first try, however she had to put it in her neck. It looked very awkward and when Taylor was awake she acted miserable. I think it was a combination of soreness from the 9 new bruises, sticky leads on her chest/belly, and the uncomfortable IV in her neck. Luckily, she was only in the hospital Thursday through Saturday, so the IV didn't have to stay long.

She started the IVIG Friday morning along with a couple new medications. They took her off Valium and put her on Klonopin. They also started a new seizure medication called Keppra and increased her baclofen for muscle tightness. For the first 4 days, Taylor was completely out of it! She finally starting to wake up a little bit on Monday and even a little more today. She's actually smiled a few times today. She's so precious! :-) Hopefully by the end of the week, she will be much more alert.......

Thanks for everyone's concern and extra prayers throughout the week for little Taylor. We love and appreciate you all!

God Bless ~ Tammy

March 12, 2010

Note: Sorry for the delay. Just going through some old emails and realized this update got lost in the shuffle.
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Friday, March 5th Taylor had an appointment in Greenville to see Dr. Strope. He decided to discontinue her Prevacid because we did not feel it was making a difference with Taylor's upper respiratory congestion. He also mentioned that we needed to follow up with Taylor's regular pediatrician concerning getting a x-ray of her spinal cord. He feels that her back might be starting to curve slightly. We see Dr. Gant on the 15th for Taylor's 18 month check up so we will discuss that at her appointment.

After her check up with Dr. Strope, we drove to the Pitt Memorial Rehabilitation Center to visit with some of Taylor's old nurses and therapist. As soon as we walked in the door, a nurse we had never seen before said, "that's Taylor.....I've seen her picture and Casey has talked so much about her." How awesome it was to know that these great people care so much about our daughter. It was very nice visiting with them, as we saw MANY nurses and therapist that made a DIFFERENCE in Taylor's life.

Tanner just started Recreation Soccer this past week. He and his cousin, Jaden are on the same team. DOUBLE TROUBLE! THey had so much fun high fiving each other during practice, they forgot to take part of kicking the ball at times.....It was so much fun to see him practice! His first game is this Sunday and you better believe I'll be recording this memory! ~ Tate is just happy to be playing on the playground while Tanner plays!

God Bless,

Tammy