Commandments

Last night Jacob asked me if I knew what commandments were. I said I did and I asked him what he thought they were to which he said they were rules. He said he learned about them at school. I asked him where commandments came from and he said, “God.” I asked him why God gives commandments and he replied, “To keep the people safe in the land.” That wasn’t the answer I expected. I thought he would say that commandments were rules to make us good little girls and boys, but he replied with a better answer. An answer that is closer to the truth.
In the Old Testament, God gave the Ten Commandments along with the rest of the Law for a much bigger reason than to provide a moral code. Unfortunately, religious folks have tended to take moral codes and even God’s commandments and make them an end in and of themselves. But God didn’t give commandments to see who could follow them the best. He didn’t give commandments to see how miserable he could make life. He gave His commandments and truth to actually protect life. As Ravi Zacharias illustrated with the game of tennis in Recapture the Wonder, the rules protect the game but they are not the point of the game. The rules prevent exhaustion and when followed can prevent strife and confrontation. To say it another way, umpires know the rules better than most, but they never win the game; only the players do. God gave his laws to protect our lives and in fact prevent exhaustion. The people Jacob was referring to were the Israelites as they were going into the Promised Land that was occupied by people who did not know God or follow Him. God wanted to protect the people from the strife and exhaustion that occur when we go away from Him. The Author of life knows the best way to live life. The Israelites are like the rest of us and they could not keep the commandments. But that’s the most amazing part of God’s commandments. They point us to our ultimate need for Him and His grace. They point us to Christ. Only in Him can we find freedom from life lived apart from God or a life lived in a futile pursuit of moral codes. The “land” was a form of rest for the Israelites. They were resting in the purpose God has for their lives. When we belong to Christ we are at “rest” in Him. We are resting or trusting in Him and He transforms us into who we are meant to be. His grace empowers us to follow His commandments and those commandments protect our new life at “rest” in Him. Thank you Jacob for the reminder.

Yanked and Burned!

We took Macayla to the surgeon’s office this morning and they pulled (yanked) her tube out and looked at the channel in her stomach. This means that they looked at the actual hole in the flesh where the tube is inserted and it was full of granulation. For those of you without feeding tubes, this is tissue that forms around the tube that can be quite bloody, goopy and nasty (those are highly technical medical terms!) It’s something that can be controlled by cleaning and using a special cream around the sight, but Macayla’s was down in the actual hole so it was hard to control. The good news is that the surgeon was able to “burn” it off with silver nitrate and hopefully, it will seal up and begin to heal over the next couple of days. He said he was quite sure that this was the source of the blood in her stomach and that it should clear up very soon. If it isn’t clear in two weeks, then we will schedule a scope.
Another bit of good news is that we were fortunate enough to get a safety bed for Macayla’s room. This is like a huge crib with high side rails and padding. It will keep her from falling out of the bed and it has an articulating mattress so we can position her better for reflux problems. This will also be helpful later with pressure sores when she is vegetative. We are so blessed the way things have been provided. How fortunate we truly are to have so many caring folks who take care of Macayla and the “things” that help make her life more comfortable and functional!

Mountain Tops

I apologize to those of you who have been wondering about the latest on Macayla and us. It seems that things have been so hectic and all of a sudden a month has flown by. We have been trying so many different things to help Macayla’s stomach and GI problems, that it has been impossible to keep up with all of them. We have tried different feeding schedules and medications to get the bleeding in Macayla’s stomach under control and nothing has worked. We have at least seen less frequency than before of blood in her stomach contents, but we still see it at least every three days if not every day depending on the week. This week we are going into the surgeon’s office and they will remove the feeding tube and look inside with a high-tech device; a flashlight. Really. When they pull the tube out they will be able to observe the hole in her abdomen and see if the hole itself is irritated and unable to heal due to movement. It is painful, but will be done in the doctor’s office and only takes a couple of minutes. If this doesn’t shed any light (pardon the pun) on the problem then we will have to scope Macayla’s upper GI. This will require general anesthesia which makes us nervous but we have exhausted all other options at that point. On a more fun note, we got to go to the mountains near Pigeon Forge last week with Jennifer’s parents and my mom. Macayla had some fun but seemed more upset more often during the trip. She may have just been in discomfort or she may have been confused by her new surroundings. Overall, though she did well and enjoyed the hot tub on the back porch. The kids loved feeding the ducks and birds near the Old Mill and Jacob got to go swimming a bunch. The grandparents gave Jennifer and I time to have a couple of meals together away from kids and responsibility and that was great. Overall it was a great trip and we got some great pictures of the kids and I even found an opportunity to get a couple of shots of God’s magnificent creation.

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.

Sumo Perseverance

Jacob and Macayla were watching a Veggie Tales movie this morning about sumo wrestling that is a spoof of the Rocky movies. The lesson in the story is about perseverance. Jacob has to wear a patch on his eye two hours a day for lazy eye. He hates it and I don’t blame him. But considering the subject matter of the movie, I thought I could help Jacob and take the opportunity to apply the idea of perseverance to wearing an eye patch everyday. He didn’t buy it. Instead, he took a scarf and wrapped it around his waist and croch making a sumo “diaper” out of it and he asked me if I wanted to fight.

GI Issues

Macayla has always had problems with constipation, but she went over a week without a BM and it was the longest I’ve ever seen her go without. So on Saturday, I gave her some mineral oil through her feeding tube and an enema. But nothing happened on Saturday. I noticed something black in her feeding tube valve, so I drew some of her stomach contents out and found black blobs floating in it. We dismissed it as possibly left over blood from where we changed out her feeding tube at the beginning of the month. Sunday, the BM’s came with a vengeance but her stomach contents changed to a dark brown liquid. This cleared up by Monday, but was back on Tuesday. We already had an appointment with neurology and our pediatrician set for Wednesday. After all of the dust settled, we are testing Macayla’s stomach contents and BM’s for blood. We started giving her Maalox to try and promote healing of her stomach lining because that seems to be the most likely problem. Her stomach contents seem to be staying clear. But this morning she got very upset and began to cry. I can’t remember the last time she cried. She seemed to be in pain, but it is hard to tell. She can’t communicate anything and it’s hard to tell if it was from pain or frustration or just an emotional outburst. To complicate matters, we are weaning her off Cystagon (an experimental medication). We believe that while she has been taking this medication, it has been interacting with one of her seizure meds and keeping the seizure medication level down. As we wean her off the Cystagon we expect the seizure medication level to increase. That increase could cause behavioral changes. So Macayla’s responses to her environment are tricky to read. She could be having a seizure, be in pain, be having an emotional outburst, be reacting to changing medication levels, or she could just simply be having an appropriate response to something, like a dirty diaper. The events that have kept her up at night that resembled seizures could have been responses to a painful stomach. We will be doing an EEG soon to determine if that is the case.