Two Weeks Again

Macayla had two seizures last night which puts her exactly two weeks since her last ones. She seems to be on a two week cycle with these. But the good news is that the pulse/oximeter alerted us to them. The first one came while I was in the kitchen and I heard the alarm. She was at 47% oxygen when I got to her. The seizure lasted 1 1/2 minutes to 2 minutes. The second one started, but her oxygen and heart rate were fine. The oximeter did not alarm until about a minute into the seizure when her oxygen levels dropped. We got the seizures under control with diastat and she has slept all night. The good news is that the oximeter did alert us and that gives us peace of mind. It also helped while we suctioned her because we could see her oxygen levels jump as her airway was becoming clear. The two week cycle is what is most puzzling to me. 

The Beach

We were blessed to be able to go to Hilton Head this past week with my family and spend some time playing. We played hard and are worn out from it. Jacob did great playing with his cousins and aunts and uncles. Macayla had fun in the water and sand. We were able to have nursing coverage for three days while we were down there and that really helped make Macayla's stay more comfortable and fun. It made it possible for one of us to stay down on the beach while the other took Macayla back to the house. Jennifer and I got to go on a breakfast date and we also got to spend some time with Jacob and the extended family. That is difficult to do without the extra hands. Macayla got to go for a bike ride on a special needs bike trailer and we had a beach wheelchair for the week (courtesy of Family Connection) to get her out on the beach. The adults made fools of themselves singing karaoke long into the night on the karaoke machine and even Jacob and some of the kids got into it. The older kids liked the karaoke best when mixed with helium from the helium balloons. With nursing there, I was even able to go fishing and caught two baby sharks and a sting ray. Unfortunately, none of us caught anything worth keeping, but it was still fun. Jacob got to go on several bike rides with us and his cousins. It was a great trip and we are so thankful and blessed that we got to go.

EEG

Macayla had a 24-hour EEG this week at the hospital. She had three seizures Sunday, three seizures Monday, and none on Tuesday or Wednesday while she was on the EEG. That's the way it usually works out. But it probably means that she is having "storms" of seizures and not any consistent epileptic activity. I say not consistent, but she has always started her "storms" on Sundays. We have increased her meds again and hope that with the right increases we can keep these to a minimum. But we have to be prepared for the fact that this could just be part of the next phase and that grand mals are part of our lives now.

We got a pulse oximeter to monitor her heart rate and oxygen levels. Hopefully, it will alert us to a seizure if she stops breathing. My understanding from our pediatrician is that when the lips turn blue, the blood oxygen level is in the mid 70% range. We have set the oximeter to alert us if she falls below 85%. We had a apnea monitor, but it did not alarm at all during a seizure because it detects a lack of movement to alarm that breathing has stopped. During a seizure, Macayla moves even if she is not breathing. So, it didn't work. We hope the pulse/ox will work better.

Virtual Toy Drive

Macayla has spent quite a bit of time in the Greenville Children's Hospital over the last couple of years for surgeries and testing. We have met families that spend even more time than we do up there and the Children's Hospital becomes like a second home for many families. The hospital makes a great effort to make the kids' stay as comfortable and fun as possible with activities, games, toys, movies and equipment. But it is not just about entertainment. It provides important pieces of equipment for therapy and special needs as well. Check out the Virtual Toy Drive and see if you feel led to help out. There are almost endless options for the way a person can donate to the cause; either by dollar amount or item type or both. It has been a great benefit to many families to have access to the books, school supplies, movies, games, therapy equipment, and many other items to make the Children's Hospital more hospitable.

Something About Sundays

There is something about Sundays and grand mal seizures. Macayla has gone three weeks since her last seizures (which started on a Sunday afternoon). Two weeks prior to that, Macayla had grand mals on a Sunday afternoon. Yesterday (Sunday afternoon) she had three more grand mals. This was right as I was telling my sister in California that Macayla had gone three weeks without any seizures. The longest one lasted over four minutes. She threw up, but she breathed through them. The interesting part is that her apnea monitor never alarmed. It registered that she had a normal heart and breathing rate. I was hoping the monitor would be a good way to alert us to a seizure. We may need to use a pulse/ox monitor to alarm when her oxygen level drops. She breathed, but the breathing was very shallow and she turned blue/gray during the seizures. Her oxygen level had to be down. We will have an EEG this week, but it is most likely that it will come back clear. Hopefully, we can at least pick up on spikes or something that might give the doctor some sort of hint as to where the seizures may be starting. Maybe then we can adjust to a medicine that can target the seizures a little more. But this may be part of the disease at this point. There may be nothing we can do about it and we may just have to live with the fact that she will have grand mals from time to time regardless of medication.

Kids are Angels for Grandparents

Jennifer and I had the opportunity to take Jacob down to Hilton Head for a couple of days and let Macayla stay with Jennifer's parents. Jennifer's cousin was at the beach for a week and invited us to come down for a few days. However, I was a bit reserved about going, because it was on the two week mark since Macayla's last grand mal seizures. The last bouts she had with seizures were exactly two weeks apart. But we went and Jacob had a blast with his cousins who are similar ages. Meanwhile, Macayla was the perfect little child for her grandparents while we were gone. No vomiting. No seizures. No choking. Just perfect. We are thankful for that, but it wasn't long after we walked in the door from the beach that Macayla choked and had to be suctioned. It seems that kids act out for their parents but never do around grandparents. This is why most grandparents usually think that the parents exaggerate how much the kids act up. It was a relief that Macayla has made it more than two weeks without a seizure. We will be doing a 24-hour EEG soon to see if we can catch any seizure activity. Jacob had a such a good time at the beach and did not want to leave. None of us did. I wouldn't mind being called by God to serve a church on Hilton Head, but I'm not holding my breath.