Illusive Video

Macayla and Jacob did well over the last couple of days as Jennifer and I were away. They stayed with Jennifer's parents while we went to Charleston for a wedding and to celebrate our own 10 year anniversary! Charleston is where we met and that means it is a town rich in mushy, ooey-gooey memories for us. It was a great getaway and we are thrilled that the kids did so well. They always do for grandparents. Of course, Macayla had a grand mal a few hours after we got home, but it was shorter than the others and she kept her oxygen levels up better than usual. I didn't even have time to get my video camera out. 

We want to catch these on video so the neurologist can see it since she will never do one on an EEG or in front of him. Last night, I ran and got the camera and as soon as I walked into the room her seizure was over. So, I put the camera on a tripod in her room and pointed it at her in the bed. I expected that within 45 minutes to 2 hours, she would have another, but no! She went to sleep and didn't wake up until this morning. I think a camera is the best anticonvulsant we could have our hands on right now. She simply does not have seizures in front of a camera!! I plan to keep the camera on her all day today in the ready position. It would be surprising if she did not have another one today since the pattern has been to have multiple seizures over the course of a couple of days. Hopefully, we can catch the seizure on video if she has any.

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. 

Little Stinker!

Sunday evening, Macayla had two more grand mal seizures. That's two weeks to the day since the last ones. One lasted about 30 seconds in the car. The second was an hour and half later and lasted 2 minutes. We gave her diastat and she slept until 3 a.m. She was nauseated and a bit agitated. We gave her medicine to combat the nausea and she slept for a little while longer. Monday morning, just before 9 a.m. she had another grand mal that was over 3 minutes. She got more Diastat. Overall she did much better through these and breathed better through them. Therefore, I did better. But the Diastat took longer to affect her that time and she only slept for two hours. After the seizures on Sunday evening, we noticed that Macayla's heart rate was very irregular. It was so irregular that it was difficult to even count. It stayed irregular through the night and Monday morning. We decided to go in for an EEG at the neurologist's office and while we were there we could walk over to cardiology and do an EKG. This was all scheduled for 3 p.m. Monday. On the way over to Greenville, Macayla became more alert and laughed. When we pulled into the parking lot, I listened to her heart and it was beating completely normal! She was acting completely normal. The EEG and EKG were completely normal! Normally this is a good thing, but in our situation, we actually want her to be abnormal during an EEG and EKG so that we can determine what is going on. The little stinker would not show off for the doctors! It is good that she recovered, don't get me wrong, but we wanted to catch these grand mals on an EEG and we wanted to do the EKG while her heart was acting strange so that we could know what we are dealing with. For now she is very clear and laughing a lot. As a matter of fact, she didn't even sleep last night. She laughed every time we came in to check on her. She had a great old time watching movies all night and laughing at her sleepy parents trying to get her sleepy. Little stinker!!

What Not To Do!

When transferring someone from one bed to another and they have a feeding tube with the extension set still attached, it is always best to ensure that the extension set is not caught on anything. The extension set is the 12 or 24 inch tube that connects to Macayla's button on her feeding tube. It got caught between me and the bed rail as I lowered her in the bed this morning. I had no idea until I heard a strange gurgling pop! I looked down and saw her shirt getting wetter and wetter and then noticed her extension set and Mic-Key feeding tube hanging free from the bed rail. I had accidentally yanked her Mic-Key out of her stomach! The whole point of us going to the Mic-Key was because it has a balloon that can be deflated for removal and this causes less pain and damage than feeding tube systems like Genie and Bard Buttons that have to be yanked out. So, in carelessness, I yanked Macayla's Mic-Key out of her. She handled it much better than I did. I felt so bad that I did it. It was one of those moments of panic where I was holding her whole tube in one hand and trying to plug the hole in her stomach with the other and asking, "What now?!" Once I regained my presence of mind, I called out to Jennifer who saved the day. Good thing I kept it together and didn't loose control of the situation, huh? 

The good thing was that it was time to change out her tube and we had a replacement at home. So we put the new one in and it is cleaner and a better size to fit the thickness of her stoma and abdomen wall. It certainly has not been a dull 48 hours. See the next post.

Camp New Hope

We had a great vacation at Camp New Hope last week. As mentioned in the previous post, Macayla laughed a bunch. Randy Brown is the director of the camp and she goes above and beyond to make sure everyone is comfortable and has what they need. We had planned on taking Jacob's fishing rods one of which is a Spiderman one. Jacob was very excited about it, but Dad forgot to pack it. So Randy ran to Wal-Mart and picked one up for the camp so Jacob could use it while he was there. One of the owners of the camp, Will Adkins, flew in on his helicopter and we got to meet him and one of his associates from the company. They brought a dog named Swiper which Macayla loved along with Randy's dog, Muggsy. The dogs got her laughing more than anything and it was contagious. Macayla's laughter quickly spread to all of the adults. Jacob enjoyed watching the helicopter take off and fly out of the valley. We got it on video so he could show his friends. The camp did some neat things to commemorate our trip. They had some birdhouses donated and they wrote Macayla's name and the date we were there on the bottom. Then we hung the birdhouse on a fence post on the mountain. Randy hopes to get a picture of it with birds in it and send it to us. Another amazing thing they did was they started putting trails in on the mountain and they were in the process of naming the trails like streets. The main trail at the bottom of the mountain was called Macayla Mtn. It was engraved on a wooden street sign and we got to bring the sign home with us. Each week that trail will be named after the child who is there. We met the nice couple who makes and donates the signs to the camp and they were a treat. 

One of the most powerful additions to the camp is the Chapel of Hope. What was a tool shed last year is now a small chapel for families to use. It has pews in it, a stain glass window, a kneeling rail for prayer, and some beautiful portraits in it from Stephen Sawyer. A young man named Joshua is a new addition to the Camp New Hope family and he was the creative hands behind the Chapel of Hope. His carpentry made the wood floors and beautiful wood ceilings possible. It reminded me of the story in the Old Testament where God gifted men like Bezalel and Oholiab to build the Tabernacle for the Israelites. Joshua's gift for carpentry among other skills were a blessing to us. The chapel is truly a sanctuary and I found it to be a great place of quiet and peace, not to mention a great place to work on the upcoming sermon I had. We are so thankful to the Adkins brothers and Randy for making a vision a reality. We are thankful that God brought Joshua into their midst and we are praying that all of the families that come there will experience the peace, joy, faith, hope, comfort, and love we have. It is truly a harbor for stormy lives.