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

Happy March everybody...February landed Taylor at Duke Medical Hospital for a week in order to try and figure out what to do about her seizures. The neurologist ended up taking Taylor off two seizure medications (sabril and topomax). They are trying her on a new seizure medication called zonegran. Since her stay at the hospital, Taylor's seizures have decreased slightly. She still has between 6 to 8 per day, but that's an improvement! Taylor has also been much more alert and verbal over the last month. I really feel taking her off the sabril medication has made a huge difference in her physical appearance!

Friday(March 3rd) we travel to Greenville to see a Pulmonologist. Taylor struggles so much with off and on wheezing and upper airway congestion. One minute she sounds terrible and the next she sounds great. She still receives oxygen throughout the night and as needed when napping.

On March 17th, we will travel back to Duke for a Neuro check. They would like to start Taylor on a new kenogentic diet. It was not available when we were there in February. They said it would become available at Duke within the next 6-10 weeks. This is what the Epilepsy foundation website says about the diet...

The ketogenic diet, which is very high in fats and low in carbohydrates, was first developed almost 80 years ago. It makes the body burn fat for energy instead of glucose. When carefully monitored by a medical team familiar with its use, the diet helps two out of three children who are tried on it and may prevent seizures completely in one out of three. It is a strict diet, and takes a strong commitment from the whole family. The ketogenic diet is not a do-it-yourself diet. It is a serious form of treatment that, like other therapies for epilepsy, has some side effects that have to be watched for. More research is being done to learn about the underlying reasons for the diet's positive effect. http://www.epilepsyfoundation.org/answerplace/Medical/treatment/diet/

Sorry, I haven't done a better job updating Taylor's blog.....I feel so overwhelmed at times. I feel like I could climb in a cave and sleep for days! Life is just really busy with 3 kids begging for attention as soon as Jeff and I get home from work. I will try and do better.....

(Donna B. Thank you for keeping up with our daughter's progress. You and your family were so kind to us when we met you in Durham. We will never forget you!)

Every night we say this prayer for our little Taylor. Tanner and Tate know it by heart and pray it with us...

Heavenly Father, through your son Jesus Christ, All things are Possible. In the name of Jesus, Heal her Heart, Mend her Mind, and Restore Her Body. In Jesus' Name...Amen.

Love,
Tammy

God Bless
~

January 29, 2010

Good evening everybody,

A lot has happened with Taylor over the last couple of weeks. We'll start with the good news....

Actually, it is great news! Taylor had an echo last Friday (the 22nd) and Dr. Hannon said her heart has made significant improvement over the past year. Her left ventricle looked smaller in size and her two leaky valves were almost non-detectable! Her injection fracture also improved from 44% to 60%. He said there was a chance that Taylor's heart could some day heal on it's own. This was fabulous news and Jeff and I were over joyed!!! She will follow up with another echo in July.....

Now for the bad news....

Taylor has continued to have many seizures a day, however over the past month they have increased in duration. Before she might have a seizure anywhere from 5 seconds to 1 minute. Now, some are lasting close to 3 minutes. On Wednesday, Dr. Winchester (her neurologist) ordered an EEG to be performed at Duke University Medical Center. Upon reviewing the study, they saw that indeed Taylor was having longer seizures, as well as abnormal brain wave spikes. This means Taylor's brain is being irritated. Dr. Winchester thinks it is possibly due to the new seizure medication (Sabril) that she started on in late December. The doctor admitted Taylor to the hospital for further observation.

So, the plan is to slowly wean her off the Sabril by tomorrow(Saturday). They have also increased two medications she is already on~(Phenobarbital and Vitamin B-6). Meanwhile, they are also weaning her off another seizure medication (topomax) and starting her on another medication (zonergram). Currently we are waiting on a cardio consult because they also want to start her on a steroid called ACTH for infantile spasms (seizures). The problem with ACTH is it high risk for infections. Before they start the ACTH, they want to start the medication IVIG in order to boost her immune system. The IVIG would need to be given over a 5 day period.

Hopefully, we will see a change in Taylor's seizures and she will be able to go home by Wednesday (February 3rd). Thanks for all the prayers and concern!

~ Tammy

~God Bless

Tuesday, January 4

First of all, we hope everyone had a very Merry Christmas and a Happy New Year. We had a very excited Christmas as we watched our two boys tear through their Christmas presents in a record 1 minute and 22 seconds! Then, for the rest of the day they played their little hearts out! Taylor was also as cute as a bug throwing us a smile here and there. All in all, it was a great day for the family.

In November, Taylor went back for a 4 day stay at Pitt Memorial Hospital. She was diagnosed with mild case of pneumonia. Thankfully we had her home by Thanksgiving! Unfortunately, she has continued to have upper respiratory congestion.

In early December, we took Taylor back to Greenville to see a Pulmonologist. He recommended that she take a Prevacaid for reflux. Although, Taylor had a Nissan when she had GTube surgery he still felt she might be having some acid reflux. We will follow up with them in February.

Taylor also visited her neurologist at Duke University Medical Center. They decided to put her on a new seizure medication called Sabril. This medication is relatively new in the United States, as it has only been approved for about a year. However, it has been approved in Europe and Canada for the past 20 years. The main side effect is loss of peripheral vision. She was required to see an Opthamologist to have a vision exam before starting Sabril She will take this medication for 3 months and then require another vision exam.

So, on December 21st, we made our way back to Duke to see an Ophthalmologist. The doctor performed her exam and kind of gave us some bad news. She felt that Taylor was completely blind. Even when she shined the brightest of all lights into Taylor’s eyes, she did not have a response. She told us what we had already heard concerning damage to the occipital lobes. She also said that if we were able to get a grasp on Taylor’s seizures that could help improve her chances to possibly see again. We are still hopeful that another part of Taylor’s brain will compensate for the damage to her occipital lobes.

Just recently, on New Years Day, Taylor started having some abnormal seizures. Her heart rate went up and she spiked a low grade fever. We took her to Pitt Memorial Hospital and they admitted her over night for observation. She didn’t have any more abnormal seizures while we were there, so they discharged the next day. This afternoon, the doctor from PCMH called and said Taylor has a Urinary Track Infection. The bacteria Ecoli grew on her urine culture, resulting in a UTI. She called in a prescription and she will start that tomorrow.

Exactly one year ago today, Taylor struggled to make it through the night. She held on with every ounce of her and showed tremendous strength. It is because of her will to live and God’s Grace that she has come so far. Today was a hard day, thinking back to what our family has endured over this past year. I still don’t know how we did it… However, there’s a verse in the Bible that comes to my mind, “I can do all things through Christ who strengthens me.” Philippians 4:13. I have said this verse in my head many times…

God Bless ~ Tammy

Thursday, Nov 12

Here's a little update for the blog to let everyone know how Taylor's doing.....

Tuesday, Taylor woke up with a temp of 102.4 and she sounded terrible. I took her to her pediatrician and they sent her to Onslow Memorial Hospital to get blood and urine cultures, as well as, chest x-rays and an RSV test. Everything came back normal and the doctor felt like Taylor had a viral infection. At first he said he thought Taylor had the flu, but when we checked out the nurse said she had Bronchiolitis. So, I'm really not 100% sure what she has. They gave her a shot of rocephin to kill any bacteria infection that she might have. The last two nights Taylor has slept great (with the help of a little oxygen). It is obvious that Taylor has A LOT of congestion that requires breathing treatments to break up the gunk and needs closer monitoring. Hopefully, in a few days she will look and sound a TON better.

I am also very happy to report that Taylor has been doing a fabulous job finding her voice. She's yelling, crying, and cooing at us. It is beautiful music to our ears!!! She is also SMILING without being prompted by a seizure. Before she would only smile after a seizure. She is also turning her head towards the right and making more eye contact. Yesterday, I came in the room and said, "Hey Taylor" and she turned towards me and smiled such a big girl smile. I know in my heart, she heard, saw, and understood that was mommy talking to her.....

We are so thankful for our small blessings! ~

Tammy

God Bless

~

Thursday, October 29

Hello all! I would think by now, life would be easier and slow down a little bit. However, with 3 children under 4 years old I think that might be impossible!!! :-) Little Miss Taylor is growing more and more everyday! Her hair is so beautiful and getting so long. Pretty soon her hair will be long enough to put a pony tail in it!

She continues to have PT and OT weekly and has her good days and bad days. On a good note Taylor is getting much more comfortable tolerating tummy time and vocalizing when she is hungry, wants to be held, or is in any type of pain. Before the only time she would cry out was when she was in pain. When we prop her up on a boppy, she turns her head from side to side looking around the room. Most of the time, Taylor keeps her head locked towards the left, so we really try and get her to turns towards her right.

On a more frustrating note, Taylor continues to have many seizures a day despite the increase in her medication. I have been in contact with her neurologist at Duke and they want to continue with the path she is on now and see what happens. She goes back to Duke on November 25th and hopefully we can get some more answers. We also finally got the results from Taylor's swallow study from July 23rd. It was a bit complicating, as it said Taylor had no swallow reflex. It also said she was at an extremely high risk of aspirating. That really puts us in a uncomfortable situation because as much as we want her to slowly eat by mouth, all it takes is for her to aspirate on her food one time and she could catch phenomena. Her heart might not be able to take that type of stress. Our OT said she would continue to work with oral motor, but would not work with the feeding side of things until she has a swallow reflux.

Meanwhile, we haven't had Speech Therapy in about 6 weeks because our therapist moved and we haven't been able to find anyone else. I am in the process now of trying to find a speech therapist that deals with pediatric swallowing and will feel comfortable working with Taylor and her heart condition. As a mother, I want Taylor to one day eat by mouth again, but I don't want to rush it and put her in further danger. Please pray, that the Lord will guide me to do the right thing and that HIS will, will be done.

Another, concern is the tightness in Taylor's upper body. For so long, Taylor would hardly bend her arms and would sometimes turn them outwards. She has quit doing that, but now keeps them bent and drawn in. It is very hard to straighten her arms unless she is sleeping and she completely relaxed. Jeff and I, along with her nurses stretch her arms really well when she is napping. Every now and then, Taylor raises her hand and our nurses think she has a question. We tell her, "YES, Taylor....you can have anything you want!"

The Cap-C program are currently reviewing Taylor's medical documentation to see if she still requires a Nurses care. They have extended her nursing care until November 16th in order to make a decision. Our Case Worker said she has not found a company that would allow their CNA's to take care of Taylor in her condition. So, if they say Taylor does not rate a nurse, they will have to, by law, provide a company for her. I'm hoping that with her documentation we will not need to put up another fight.

That's about it for now. I hope everyone is having a great October and Flu-Free!!!

Love ya'll!

Tammy

God Bless
~