Yosemite Sam and the Pulse Ox

It's 3 a.m. and Macayla is hooked up to the pulse oximeter. It's supposed to alarm if her heart rate or oxygen levels get outside set limits. In her case, seizures make her stop breathing and her oxygen saturation can drop as low as 40%. We set the monitor to alarm as soon as it reaches 80%. This lets us know a seizure is occurring. The alarm is four rapid beeps, which repeat every ten or fifteen seconds. Of course, there is the problem of false alarms.

I purposefully waited until after midnight to hook her up since that seems to be the time she has had her last two seizures, if that is what they were. I set the machine up. It was running fine. I got back in bed. Two minutes later the machine alarms, but only two of the four beeps. That is half of the normal alarm. This means false alarm. Silence for a few minutes. The alarm again. Again it is partial. So I go to check the machine and see if Macayla has moved her hand and knocked the probe out of alignment. She has not moved. The machine is reading perfectly. I stand there and stand there. Nothing. No alarms.

This is typical. When we are in the room, no false alarms. As soon as you step out of the room, random alarms. The readings are perfect when you come and check and there is no "recent data" button to see what happened. But turn your back and the pulse ox goes crazy. I think it waits for you to get into another part of the house and then it calls you back! It forces you to sit next to it in the pre-dawn hours. As long as you are watching it, it is silent. As soon as you turn your back, BEEP! BEEP! BEEP! BEEP! The alarm sounds and I go into a Yosemite Sam tirade of expletives, "Frickin', stinkin', frackin', flippin', blippin'..." This machine is notorious for doing this! It has not alarmed once while I sat here, 20 inches away, and typed. But just wait. As soon as I try and go back to bed, BEEP! BEEP! BEEP! BEEP! If I were Yosemite Sam, I'd use my six-shooters!

That's New

Macayla had a great Monday and seemed to be over her seizure(s) from Sunday morning. We put her on the pulse oximeter Sunday night but since she seemed back to herself on Monday, we did not put her on it Monday night. That was a mistake as it seems she had another big seizure in the night during her sleep. It had to have been between 11:30 p.m. and 5 a.m. She was post-ictal this morning as she would not wake up and she would not wet her diaper. She was sleeping on her side and obviously had something in her mouth. When I suctioned her, I pulled out formula which means she refluxed or vomited. She had to be cathed later in the morning and was lethargic the rest of the day. She is smiling now, but still tired. To our knowledge, these have been the first big seizures she has had in her sleep. It is also unusual to skip a day between big seizures. It will be a long night as we will put the pulse ox on her again. Unfortunately, it gives a lot of false alarms, but we need to know if she is really having these seizures or not.

Busy Sunday

Macayla has been acting very "seizure-ish" all week as we call it. She has little precursors that tend to pop up before big seizures come. But she made it all week without any. As far as we know, she has never had any grand mals during the night when she is sleeping. But this morning changed that. She would not wake up this morning before church. She also had not wet her diaper (another symptom during seizures). Jennifer had to use a catheter and when she rolled her over, Macayla started vomiting.

Apparently, she had a seizure in her sleep, and had vomited some. Amazingly, it was still in her mouth and she was still able to breathe. When Jennifer rolled her on to her back, she choked and had to be suctioned. Jennifer had to deal with all of this on her own as I was already at church preparing for a sermon.

Macayla has not had any seizures since. Fortunately, we have a pulse oximeter that can alert us if there are any more. She was able to attend Jacob's baptism today as well. Jacob did great and it was very meaningful for me to participate in his baptism. There will be more about it on Jacob's page soon.

I Don't Think I Can Do This!

Jacob will be baptized this Sunday. He and I talked about it and I told him what to expect and he was very interested in how he will go under the water. So, we have spoken about it several times over the past couple of weeks. I will also be preaching this weekend and I have been preparing my sermon. Jacob walked into the den today where I was pacing and reading my sermon.

Jacob asked what I was doing and I explained that I was preaching this Sunday. He asked, "You mean this Sunday? When I get baptized?" I told him yes. He asked, "Are you going to talk about baptism?" I told him yes, that in fact I was. Because of what he and I had talked about before he asked, "So, while we are standing in the water you will say all of this stuff?"

I responded, "Yes. I will dip you into the water and while you are under I'll preach my sermon. It should only be about 30 minutes."

Jacob pondered that for about a second, then his eyes grew wide, "While I'm under the water?! I don't think I can do this!"

I reassured him I'll do all my yapping before we get into the water.

Big Brother

Last night, I was cutting Jacob's fingernails. Unfortunately, I cut one in a bit too far and it did not feel good. No blood, just uncomfortable. Later, he and I got in the bed with Macayla and we all watched a movie together. Macayla was having trouble falling asleep. Afterward, Jacob stayed in the bed with Macayla while I got her meds together. I noticed she needed her fingernails cut so I told Jacob I would go get the clippers. I left the room, but from down the hall I could hear Jacob talking to Macayla. He said, "Dad is going to cut your fingernails. He cut mine and one of them he cut too far. It hurt a little bit. But don't worry, Macayla, I don't think he will do that to your fingers."

As I walked back into the room, Macayla was smiling as Jacob was laying next to her and holding her hand. She liked hearing him and feeling him near her. He talked to her and joked with her but after a while he grew still and quiet and so did she.

Camp New Hope 2009

We just got home from Camp New Hope in North Carolina. This is the camp started by two brothers for children with life-threatening illnesses and their families. Randy, the camp director, makes sure the families are fed and cared for and she keeps the place in great shape, which is no small task. The camp sits on 160 acres along the New River in West Jefferson, NC. It is beautiful!

Randy's grandson was there and he and Jacob played nonstop the entire time. They turned the volleyball court into a huge sandbox. They fished with me and swung on the rope swing. They tried to earn sugar cookie dough by catching fish or skipping rocks the most times. Jacob is worn out from all of the fun. We discovered some cows on the adjacent property and Jacob removed his shirt and pretended to be a bullfighter. Ole!

Macayla did well overall. She looked like she was going to have some bad seizures on Sunday, but the Versed seems to have nipped it in the bud. She loved being on the Bobcat mini-truck. Its diesel engine, vibrations and the bumps of the trails made her smile. When we took her up the mountain or for a ride at all, it put her to sleep.

Oh, and while everyone back home had sweltering temperatures, we had a nice breeze in the low eighties as a high. It was actually cool in the mornings. Macayla's nurse came along and that helped to free us up for Jacob or to just take a nap. Plus, he was really good about getting her out under the shade trees. He brought along some sawdust and mixed coins in with it so Jacob could search for the money. Jacob got into that! We put Macayla in the river and she liked the sound but it was too cold for her. She preferred sunbathing on the shore with mom. We all ate too much and relaxed a lot. It's one of those places you don't want to leave once you get there.

Camp New Hope has been hit with the economic recession as well. The brothers who started it have worked hard to keep it going in spite of the financial struggles. They could use our help. The camp is a charity and all donations are tax deductible. They have a volunteer staff right now that keeps up the mowing and maintenance which is amazing considering the acres upon acres that have to be mowed each week. Some local churches and individuals have helped raise some money and have donated items the camp needs. But more help is needed.

Refresh Your Browsers! Again

Due to a few technical "opportunities", our website has been redesigned a bit by Jennifer's aunt who we fondly know in cyberspace as the webmaster. She has done such a great job at keeping it up. So, refresh your browser to replace the old look in your computer's memory. Some of the pages are still coming on board, but it is almost complete. Jacob has a new entry from May and look for a June entry soon. Jacob has been busy!

Thanks to Jennifer's aunt, Debbie, for all of her hard work. Thanks to all of you who read, pray, and minister to us. Thanks to Christ for all He is and does.

Home Security by Jacob

Yesterday afternoon, the kids and I were about to load up and run an errand. The garage door was up as that is the way we go out with Macayla. My neighbor from across the street ran up to the front door and told me to call the police. He said a woman just stole my weedeater and a can of gas from my open garage. He said she came to his house first and asked for gas. He told her to go to the gas station less than a half of a mile away. She then drove into our driveway. My neighbor said he watched her walk to her truck with the weedeater and gas can and drive out. He tried to cut her off at the street and she floored it and almost hit him! He was shaking when he came to my door because he was so mad! It was certainly a drug addict in need of a quick fix. She did this at 5:20 in the afternoon when most people are coming home and that would not be the smartest time to plan a theft from a garage. It is sad people get this way.

We called the sheriff's office and reported the situation. I was concerned Jacob would be scared that a stranger came and stole from us. But when he found out it was a woman, he said, "Girls don't like gross stuff, so if she comes back I'll just take off my clothes and show her my hinny! She will think that is gross and run away!"

Are They Gone?

Macayla ended up having six grand mals between noon Wednesday and Thursday evening. She was passed out most of the time between them. She woke up around 11 p.m. last night and has been awake since. She is happy and reactive. It appears she has come out of it. The only residual effects we see is that she has random twitching in her face and some rigidity in her arms characteristic of seizure activity. We have never seen the face twitching before. 

Overall, she is happy and I'm surprised she is still awake. She has tolerated some much needed food and water.

They're Back

Tuesday evening, I was talking with Macayla's pediatrician and told her that Macayla had not had a grand mal for a long time. She had some little seizures and some days that looked like she could have some big ones, but we were beginning to wonder if her brain was capable or connected enough to have a big seizure anymore. The next day, Macayla put all questions to rest. She had a grand mal while we were eating lunch, twenty minutes before we arrived at her neurologist's office for a check-up. It has been ten weeks since her last one and of course she had it when the neurologist could not observe it. She had another when she got home from the doctor's office. These were more like what we saw last year when she would stop breathing and throw up at the end. I'm sure the other patrons in the Haywood Mall food court were a bit freaked to see that unfold. 

She has had two more today and it may not be finished yet. At least with the last one she did not throw up anymore, especially considering she was in her freshly laundered wheelchair and she had just been bathed. 

We have a respiratory therapist coming today to exchange out our faulty pulse oximeter and teach us a bit on suctioning. Suctioning Macayla has become more challenging lately. All of this is exhausting for her and I wish I could just make it all better. But we have to roll with it and maybe the seizures are back now that it is summer. She had her first grand mal seizures almost one year ago.