These years were probably more of a rollercoaster ride than any other of the years before. That might be because the events that had happened will stick in my mind for a VERY long time.
Right before Kiera was to turn 20, she went through a period of basically being seizure free, it was a total of 9 months. Kiera did not have one seizure, at least not any that were visible to the eye. We thought, WOW, we finally have figured out her diet to a "T" and it's doing what it's suppose to be doing, controlling Kiera's seizures!
We were starting to see more personality and she seemed to be very happy, even her health through theses nine months was great!
In August of 2007, the honeymoon was over. Kiera's seizures were increasing again. We started to use resucue medications on a daily bases and we were using them more than one time per day.
After talking with her Epileptologist we came up with a plan to attempt to slow the seizure activity. We were going to titrate up on Ativan then slowly titrate back down. This didn't help, it actually had the opposite affect, Kiera started to have what we call, re-bound seizures. So we tried another medication called Tranxene in the same way as the Ativan. This too did not help, we then started to see that Kiera's heart rate was increasing greatly, ranging from 120- 160. Kiera's normal range is between 80-100.
Then we added another seizure medication called Felbamate.
Felbamate is a seizure medication that was pulled from the market awhile back because of the high risk of Aplastic anemia and kidney failure. The FDA has placed a 'black box warning' on this drug
It was brought back on the market as a last resort drug. It does work for some people and it might be the only drug that works for some. This was our second time on Felbamate, the first time it did nothing for Kiera's seizures, but now that she is older her Epileptologist wanted to try it again. We believe this medication played a big part in Kiera's declining health.
Kiera got very sick, she was having issues with very low blood pressure readings, tachycardia, her O2 was also dropping and with each day she was becoming less and less responsive. All of theses things were going on along with a huge increase of seizure activity.
Kiera's lungs begain to sound crackly, and she started to have many bouts of emisis (vomiting) We put a call into her regular Doctor and he said to call 911.
When we got to the hospital, Kiera had 2 more seizures that required more rescue medication. After about 1 hour she had another emisis and then started to crash. Her oxygen would not go above 77% even while on 10 liters of O2 and her blood pressure was around 60/40.
The hospital had called in their crash team and took Kiera to the ICU.
While in the ICU, she had another seizure. The ER Doctors just could not get her O2 to come up so they had to intabate.
I was there without my husband, it happened to be a day where he had to be at work because they were short staffed.
This was the worst day of my life, I was alone and I thought that I was about to loose my girl.
I do have to say that the staff from the home where Kiera lives were there, but when you are in a situation such as this, you need your family around you.
Kiera had a series of x-rays and many blood tests ran. The x-ray showed some pneumonia, the Doctors were thinking that this was the cause of what was going on. But the next day, they took another x-ray and ruled out pneumonia. It probably looked like Pneumonia because she did aspirate a few times the day before while seizureing. Now we had no answers as to what was happening to Kiera.
Since she was so unresponsive and not moving, the Epileptologist wanted to do a VEEG, this is a EEG with video, he thought that maybe she was in status (continuous seizure activity) and wanted to rule that out. The VEEG ran for 1 day, and did not show that she was in status.
The next day they checked to see if she possibly had a stroke, that too came back fine. There was one Doctor that kept saying to us that 'sometimes you just have to let go, you have to think about 'are we doing this for Kiera or you, the parents?' I was upset about the comments, but I also know that the Doctors see so much and they don't want to have anyone suffer, but this is my daughter, she is a fighter, always has been and I could not see this ending any other way but good, she will get through this.
While in the ICU, they placed a pic line in Kiera's arm, This could be used to give meds and to draw blood, this was a godsend, the last thing she needed was to poked everytime they needed a blood test to be ran. Kiera is a very hard poke, her vains have been so much through her life so this was a wonderfull thing.
Kiera remained on the ventilator for 13 days, she was still so unresponsive to her environment, she didn't even respond to my voice or touch. She was not fighting the vent either, which the Doctors were suprised and discouraged about. She was so sick that she did not have one seizure during this time.
She gained 20LBS in the 13 days, they said it was because of the fluid intake along with the fact that she was not moving at all. She was so puffy, her fingers, her eye lids her ankels, so so puffy.
She also needed to have shots to prevent blood clots and those went into her stomach.
Her potassium levels were also dropping down to dangerous levels, she then needed to start taking a potassium supplement, Kiera was on so many medications I could not see how anyone could function with so much medication in their system.
The Doctors kept testing her to see if they could pull the vent, but Kiera kept failing the test. Finally on the 13th day, she passed the test. She was showing the right numbers on the vent machine, so they asked me to step out of the room while they pulled it. I did not want to go, but they said that it can be quite traumatic if things don't go well and they might have to intabate again. I stood right outside her door listening to everything that was happening in Kiera's room.
If she did not start to breath on her own, they would have to intabate again and then we were then going to be faced with the decision to place a tracheotomy. We were told that there is a time marker for staying on a ventilator, and that magical number is 14 days, after that there is a higher risk of not being able to come off, and there would be vocal cord dammage among other problems. We love to hear Kiera 'sing' so having a trachea tube placed, she would have lost that ability to vocalize, we were all hoping that she would come off but he days were ticking by.
The Doctors extabated Kiera, she was breathing on her own! She still needed O2 to help her along the way, but Kiera was breathing on her own!
After 2 days of being extabated, Kiera was transported to Step Down, that is a floor for people that were in IUC and are ready to move to another floor but still need closer moitoring that they would not get on a regular floor.
While in Step Down, Kiera still remained very unresponcive. We just could not figure this out. When she would lay on her back her O2 would start to drop. A ENT Doctor came in and did a test to see why this was happening. We were afraid that Kiera did end up with vocal cord damage, and that she was not swollowing correctly.
What the ENT found was that Kiera's muscels in her toungue were very weak from being on the ventilator for so long, so that when she was on her back, her toungue would relax and kind of fall to the back of the throught. This was blocking the air way some, so to bring her O2 down.
After the puffyness of all the fluid intake had disappeared, Kiera had lost alot of mucsle mass, her legs were so thin, she then weighed around 93 LBS. She still continued to have tachycardia, low blood pressure, and vomiting. Now she was having issues with a temperature. We were definitely not in the clear yet.
Because of the constant tachycardia, Kiera had a EKG and ECG done, thankfully that was normal, so then it had to be the medications that she was on.
Everytime we would bring that to the Doctors attention it was dismised, but what they did say is that Tranxene can cause high heart rates, but it is very unlikely that that is Kiera's issue, the possibility of that being the cause was a 1% chance, I thought "Welcome to the 1% kido" by this time we were getting fairly frusterated, there has been no clear answers as to what was causing all of this so how could we avoid this from happening again if we never find out why it hapened in the first place.
The days went on, Kiera was a sleeping beauty all day, and all night. We finally had the tranxene stoped, then had many conversations with her Epileptologist about the Felbamate. At this point Kiera was on 4 seizure medications. I finaly said that Kiera was going to have seizures requardless of how many medications she was on, I don't think that this is a good quality of life for her what so ever, I would rather take a seizure any day than to see her like this. We want her off the Felbamate.
He listened to my concerns and agreed to take her off.
As the days went by in the hospital Kiera slowly started to wake up, she would be awake for a very short amount of time, 10 to 20 minutes, then sleep for hours after.
The strange thing was is that Kiera is a VERY vocal child, but we did not hear a peep out of her for a few months (while we were in the hospital and even for a few months after, while at home.)
To this day we still do not know what caused Kiera to have had such a rough time, we spent a total of 63 days in the hospital and can not even say why. Kiera still has very low blood pressure, but in normal limits, but the high heart rate did resolve itself eventually.
Kiera has since spent two more times in the hospital after this, but for much minor illnesses and for a far less amount of time hospitalized.
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