Astray

I often feel like circling the wagons. There are times when I want to keep Macayla home and not go out with her and notice all the stares. There is a difference between someone noticing Macayla and someone staring at Macayla. The stares I struggle with are the horrified stares as if Macayla is a monster. The intrigued stare as if they are looking at an alien recovered from Area 51. The “I’m going to vomit” stare because there is actual drool coming from Macayla’s mouth. Usually, I hardly notice the stares, but there are times that I just want to keep Macayla at home and away from all that is out there. It’s hard to tell if it is just exhaustion or grief or just a big mix of both. But my wife is such a good balance for my circle-the-wagons mentality. She always reminds me that Macayla has a purpose in life just like the rest of us. She needs to be out there as much as she can, experiencing what she can, and impacting the world whenever and wherever she can. My wife reminds me that those stares are opportunities to start a conversation and let people know that Macayla is a sweet little girl with a purpose. It is an opportunity to share what God is doing in her life.
I have been studying Psalm 23. It is famous for funerals, but that is not its only purpose. It is about life. It starts with, “The LORD is my shepherd; I shall not want. He makes me lie down in green pastures; He leads me beside quiet waters.” This poem starts where life as a Christ-follower starts. It starts by clearly stating who God is which indicates who we are and then it speaks of rest. The Lord is a shepherd. One who guides, protects, provides, and prepares. By sheer logic, if we call him our shepherd, we are calling ourselves sheep. Sheep are the dumbest livestock one can own. They will wonder away from the safety of the flock and expose themselves to predators as well as stray away from the shepherd and all he has to offer. The rest it speaks of is not an afternoon nap, but rest is a metaphor for trusting in who God is and in the purpose he has for our life. This Psalm was written directly out of the experiences of a shepherd and a king named David. His life taught him that people are like sheep; we have all gone astray. We have wondered away from the reality and truth of who God is, who we are, and the purposes for which we exist. Life as a Christ-follower starts and even grows by coming to grips with that reality on a daily basis. I must admit that I often don’t trust, I don’t rest, in the reality of who God is and the purpose he has for Macayla and our family. But the truth is that even when we are in the valley of the shadow of death, that doesn’t change that purpose. If anything, it’s in a dark valley that the light of Christ becomes stark. Macayla has a purpose. It may be to melt the stare of one person’s heart so that they when they look at her they won't see some strange carnival exhibit or refugee from Area 51. They will see Christ and all He made Macayla to be.

No Seizures!

Macayla’s EEG showed no seizures over the 48 hours she was hooked up. This is remarkably different from past EEG’s where we would have 100+ per day. Part of the reason is that so much of the brain has atrophied that there is less brain to cause a seizure. The other part of the equation is that her medications are controlling the generalized seizure activity. The doctor did confirm that she had some focal spikes in the temporal lobes, but overall we are celebrating that Macayla’s day is not broken up with seizures like before. This means that the episodes we have been seeing are either behavioral or pain related. In relation to pain, we will know more when we get the GI problems under control. The MRI has shown some “significant” changes again. This time the doctor said there were some abnormalities in the white matter. We aren’t sure yet what that can mean but we hope to get to view the MRI images sometime this coming week.
Macayla’s feeding is going well and we were able to get 1000 calories in her yesterday for the first time in two weeks. She has had less black or brown blood in her stomach contents over the last couple of days and she has less agitation with feeding. We are not out of the woods yet, but she is definitely on her way. He stomach contents tested positive for blood this past week so we know we have irritation but the new formula and increased protein-pump inhibitor seems to be working.
Unfortunately Macayla has stopped walking with assistance. She normally could bear weight and take steps with full assistance from us, but since we unhooked from the EEG, she stopped bearing weight on her left leg and is really not getting anywhere with it yet. Her PT and OT worked with her on Wednesday, but we did not get any good results yet. We are trying out a stander to see if it is helpful and she seems to like it. This allows her to stand safely and keep blood flow to her legs and gravity certainly helps with GI flow. Stander equals more dirty diapers!

GI, EEG, MRI

Macayla had a three day trip to the hospital for a follow-up EEG and MRI. It all went very well. Too well. She did not have any of the episodes we were most concerned about while hooked up to the EEG. As a matter of fact, she was more alert and interactive than usual. This isn’t the first time she has pulled that trick. But overall, it seems her seizures are in control compared to before. We have hardly noticed any of the seizures she used to have and after watching her on the EEG monitor, we wonder if what we think are those seizures are actually muscle spasms or behavioral. While the doctor was visiting us, Macayla had some movement in her arms that was typical of the seizures we used to see, but when the doctor looked at the EEG monitor, he said it wasn’t a seizure. So overall, seizures are down and that is good. It is most likely due to the fact that the part of the brain that was causing those has deteriorated. According to the EEG tech, there were some “focal spikes” on her EEG and that could indicate a higher probability of a focal seizure, but it doesn’t mean that a seizure is imminent. The only other possibility would be that she would be having seizures in a deeper recess of the brain and it doesn’t register on the electrodes as well. I also wonder if there is less conductivity between the brain and the electrodes since the brain has shrunk and is not as close to the skull, but I have not been able to ask that question yet. We will wait for a full report on the EEG, but overall her seizure activity is much less. After the EEG she had an MRI and we hope to hear about that in the next couple of days. As far as GI, she has yet to tolerate a full-day’s worth of calories. She gets irritated toward the end of the day while feeding. But the color of her stomach contents seems to be making baby steps toward clearing up. We have had to spread out her feedings to smaller amounts more frequently and that is what she is doing today. We are experimenting with scheduling and the mixing of formula to find what works and is efficient, but our goal today is to get 1000 calories in her. The x-ray of her lower abdomen came back normal, so we are pretty sure that it is an inflammation and not a back up. She may have become allergic or intolerant of her formula so changing to EleCare may help that. Unless she gets worse, we are holding off on anything invasive.

Don't Forget the Suction Machine!

Macayla visited the dentist yesterday for a routine cleaning and check up. They have to sedate her to work on her. She got the max dose of meds, and she never fell asleep during the appointment. She has quite a tolerance! She has already lost a couple of teeth including a front tooth and the other front tooth was pulled because it was loose. Unfortunately, the sedation affected her all day which was different from last time. The last dentist visit we sedated, but she was alert and active afterwards, but not this time. We fed her after the visit, and then headed to the GI doctor to deal with the stomach problems. When we pulled into the parking lot, Macayla threw up a little bit. She had trouble clearing for a second and to make things worse, we forgot the suction machine. Not good. She cleared, started breathing and we went in. While inside, we moved her out of her chair to change her shirt, I think, but moving her brought on major vomiting and she could not clear. It was stressful and when I asked for a suction bulb or suction machine, there wasn’t one to be found. They had to go to the 2nd floor of the office building and get a crash cart. Thankfully, Macayla was able to clear and started breathing. Once we got the crash cart, we suctioned her and she did fine. We were able to get some food in her later in the day, but at a slower rate than normal. She was groggy for the rest of the day and she slept all night without moving. I think we will remember to bring the suction machine from now on.
The GI doctor wants to increase her protein pump inhibitor and we have changed the formula we use to feed her. If we don’t see an improvement in her stomach by Friday, then we will test her stool for signs of infection that could cause irritation in her esophagus or stomach. What ever is causing it she has irritation that is oozing blood into her stomach and we hope these steps will bring healing. We had an X-ray of her lower abdomen done and we are waiting to hear if it showed any impaction or problems. She has gotten to the point that it hurts when we feed her. So we really want healing as fast as possible. This is new territory for us and we are trying to learn how to help her. The doctor is not in a hurry to scope Macayla which is good because it involves general anesthesia and we are not ready to take that risk. If none of these options help, then we will revisit what can be done and that may include procedures that are not fun, but we’ll see.

GI Update

As of right now, Macayla is not showing any signs of blood in her stool. Her stomach contents looked clear for the 48 hours we tried Maalox but it went brown again within 24 hours of stopping it. Sunday afternoon it was really dark and last night it was almost black. The GI doctor said that we should increase her Zegerid (a protein pump inhibiter like Prilosec) and give her another half dose at night. We will stay on this increase for about a week and see if it clears her stomach. If not, they already have an appointment in place to scope her. This process is hard because it takes time. There are several possible causes for her stomach having problems and we have to eliminate one possibility at a time. We are starting with the less invasive obviously. Our prayer is that the increased Zegerid will help her stomach and that will tell us that she is having stomach irritation that we can regulate and make more comfortable. Her neurological condition and feeding tube both provide opportunities for stomach irritation so it seems like the most likely cause of the problem. So we wait to see.