Two Years

It was two years ago today that we received notification of Macayla’s diagnosis. It was a colder and cloudy day. Today is more pleasant. But we had to take Macayla in to have her tube switched out. We finally got a Mic-Key button put in. Mic-Key feeding tubes are held in place by a balloon inside the stomach that is filled with water. It has a locking mechanism that the feeding tubes lock onto. The advantage to these tubes is that we can change them out at home. We will simply deflate the balloon and the tube pulls out and then we can insert a new one and inflate it to keep it in place. It has to be changed more often than other tubes, but it is less traumatic to her site and doesn’t require a drive to the doctor’s office. So Macayla got a new tube for Christmas. Our nurse quipped that everyone wants Mickey for Christmas, but this was not what Macayla had in mind! The tube change went great and Macayla only bled a minimal amount. Her site is healing well. We went down afterward and had a contrast study on x-ray that showed that the new tube is flowing correctly.

Much has changed with Macayla in two years. She was eating, talking, and walking two years ago. She ate cheese constantly. She loved filling up her little purses with all the toys she could fit into them. They would overflow with stuff. She takes after her mom! She liked playing with any animal. She now is immobile. She doesn’t eat or drink or talk. She is much taller and thinner than she was two years ago. She still has a great smile, a quirky sense of humor, a great memory and still loves movies. It has been a long two years in some respects, but it has been a blur. We stay so focused at times that suddenly we look up and discover that two years has passed without our full realization. Where will we be two years from now? 

Jesus' Address

Christmas has all of its cultural baggage and even controversy these days. The season (more accurately the marketing) begins at Halloween. The celebration is often warped by materialism as throngs of people step on each other to buy presents. Stores are afraid to use the term “Christmas” because it might offend, so they use the term “holiday” even though it comes from the words “holy day.” This season’s purpose has indeed become muddled. It is difficult to not get sucked into the vortex of controversy, wrapping paper, money, and stress over the people that are so hard to buy for.
As I watch Jacob get more excited about Christmas this year than any other so far, I wish I could recapture the wonder and excitement of childhood. I wish I could recapture that feeling, that “Christmas spirit” that seems so fleeting in adulthood. But Jacob’s questions and statements about Santa Clause made me realize where the true wonder lies in Christmas. Jacob said, “You have to be good if you want Santa to bring you any presents.” This concept is expressed countless times at Christmas in songs and among parents to their children. This concept departs radically from reality. The wonder of Christmas lies in the fact that the God of the universe didn’t go down a list and weigh out if we had been good enough to deserve being saved from a fallen world. The fact is, compared to a perfect and holy God, just one of our sins puts us on the “naughty” list forever. The wonder of Christmas is that the God of the universe who created us loves us so much that he came to us. He came to us in the flesh, a man, in surprisingly low economic and social status among the people 2000 years ago. The psalmist echoed this wonder when he wrote, “What is man that You (God) are mindful of him?”
Like us, the first disciples were caught up in the physical of the incarnation. The Gospel of John starts off with all of these lofty declarations of Jesus being eternal, from before time and the creator of all things. Jesus is called the Lamb of God and the Son of God. But when the first disciples meet Jesus their first question is “Where do you live?” Ravi Zacharias points out in Jesus Among Other Gods that we certainly could think of better questions to ask than the address of a man declared to be the savior of the world. The reader and the disciples get the same challenge from Jesus, “Come and see.” When one of the disciples learned that Jesus was from Nazareth, his response was “Can anything good come out of Nazareth?” Like us they were so focused on the limited portion of reality called the physical. Jesus’ address was not merely Nazareth. Jesus of Nazareth was also God the Son of heaven. Jesus’ address is at the heart of what Christmas is all about. It carries us through the materialism and controversy of Christmas. It shows us what is important to the God who is mindful of us and loves us.
When we and the disciples want to know where Jesus is from, he challenges us to “Come and see.” Ultimately, Jesus was from beyond Nazareth. Jesus was born of a virgin, conception without consummation. His origin is heaven and that does indeed tell us his worth. “Can any good thing come out of heaven?” Come and see the baby, wrapped in swaddling and lying in a manger. Come and see that life is not a material pursuit or about our earthly address. Ravi Zacharias wrote, “For the disciples, Jesus’ answer to their simple question – “Where do you live?” – was to lift them beyond race and culture, beyond wealth and power, beyond time and distance to make them true citizens of the world, informed by the world to come…He showed them the inclusiveness of His love for the whole world. But in that was the exclusivity of His truth, for which they were willing to give their lives. We have reversed Jesus’ order. We have made truth relative and culture supreme and have been left with a world in which wickedness reigns.” I pray Jesus will reign with all his wonder in our hearts this Christmas.

The Tube Plan

Macayla went back to see the surgeon again today. Her incision where the tube was placed had looked better this past Sunday and Jennifer and I were in the hospital Monday through Wednesday morning. When I saw Macayla’s incision Wednesday, I could tell it had opened up more since I had seen it last. It was draining like crazy and so I stepped up on using the special gauze they had given us (Aquacel) and changed it out multiple times a day. I called the surgeon about it and when we got into see him today, her wound had already improved. But he cauterized it with silver nitrate and we are hoping that it will look better by Monday when we will pick back up with the Aquacel. For those who are interested, we cut small pieces of the Aquacel and pack it into the incision right at the tube and it absorbs all the discharge to help keep the incision dry. If you are not a person interested in such things, sorry and I hope you aren’t reading this on your lunch break or something. In the meantime, we plan to go back in two weeks and trade out this Bard Button (that still leaks) with a Mic-Key. Our prayer is that the removal process won’t tear up her tube track and start the bleeding all over again. We pray that she will continue to do well with her feedings and get healed up soon. Overall, she is a great patient and handles all this much better than her daddy.

Love My Body

As Jennifer is recovering from surgery, I have been exposed to more than I ever wanted to know about the human body. I am so thankful that there are people like Jennifer and my sister-in-law who are willing to go into the medical field and take care of the rest of us. I get quite squeamish about much of this. But this morning, in the hospital room, God reminded me of something He said. He said that husbands are to love their wives as they love their own bodies. The implication is that we would naturally protect and care for our own wellbeing and since Jennifer and I are “one flesh” in marriage, caring for her is caring for me too. Lest we think God wants us to use a selfish motivation to care for our wives, He said in the sentence before this that husbands are to give themselves up for their wives as Christ gave himself up for the Church (and this isn’t the brick building on the corner, but the people who make up the Church around the globe). He gave his body over at the cross to bear the pain and separation from God that our sin has brought. He died a horrible and painful death in our place. I believe God reminded me of this because in the coming weeks, I must be prepared to once again give myself up to care for Jennifer. I’m not too good at this normally. Selfishness and my agendas tend to distract me from her care. I couldn’t take her place in the operating room (I am lacking the uterus necessary for a hysterectomy) but I wish I could take her pain away. I don’t understand all that she needs medically, but I pray that I don’t fail to provide what she needs holistically. I pray she recovers and that I learn more about what it means to “love my own body” by caring for her. I pray my care for her won’t fall away after she recovers. I pray this simple circumstance can be used to teach me more about the mystery and wonder of what Christ did for us at the cross. Check out Ephesians in the Bible. The whole letter is worth a read.

800 ml

Macayla seems to have turned a corner. Yesterday and today she has gotten all or almost all of the normal amount of formula she should get in a day. She is scheduled to get 800 ml of formula per day plus some free water. That may sound strange. We don’t charge her for the formula or the water, so don’t worry. We have struggled some days to get 200 ml in her after the surgery, but this weekend it got better and then yesterday and today she seemed to leap back into the groove. She will still have a GI study to see the functionality and structure of her stomach and GI but at least she’s back up to where she should be. Her home nurse, Hannah and her Grandfather Keith were taking care of her the last couple of days and they apparently have the magic touch of getting Macayla back up to speed. This was especially good since Jennifer and I have been tied up at the hospital as Jennifer recovers from her surgery. Jennifer’s surgery went well and she absolutely needed to do it according to what the surgeon found. But she’s doing well and the doctor seems pleased with her progress. We have certainly seen the sustaining power of Christ through the prayers and ministry of others. We are so blessed and thank you to all who are praying and helping. Thank you for being the hands and feet of Christ.

The Good Pus, The Bad Pus, & The Ugly Pus

Pus. According to Webster’s, pus is a yellow-white substance found in abscesses, sores, etc. consisting of liquid plasma in which white blood cells are suspended. Yuk. We took Macayla to the surgeon’s office yesterday to let them check her tube site and incision. In the last 48 hours it had not looked too good so we were concerned that it might be the beginning of an infection. The doctor said it was not an infection but that it certainly did not look as good as it should. We learned that there are two kinds of pus. Yes, there is normal, good pus (hard to imagine for those of us outside the medical profession) and then there’s pus from infection. Macayla had some pus coming out from around her site and it was the “good” kind. There is a fancy medical term for it, but it still looks like pus to me. It did not have a foul odor and her site was not warm. These are indicators of infection and, yes, “bad” pus. They gave us some special gauze-like material to pack around the tube site to help dry the incisions up. We packed the site and put regular gauze over it. All I know is that pus, good or bad, is ugly. On another note, Macayla may go back for a GI study to see how her stomach empties. Even before the surgery her stomach seemed to empty slowly and that makes it difficult to get all of the calories and volume of water she needs. It was worse after surgery so we started a medication called Reglan and so far it seems to help. Yesterday, I felt like I wasn’t keeping up with her stomach. She was empty pretty quickly between feedings. Hopefully this will solve the problem and we can skip the GI study, but if the medication is not successful we can do the study and determine if there are any structural or functional problems. Overall Macayla seems to be turning the corner as of yesterday, but I wish we could get the button on her feeding tube to quit leaking.

Two Old Men

Two old men had been friends since childhood. They had watch each other play baseball and graduate from school. They each had been there when the other got married. They each celebrated the birth of the other’s children. They each attended the funeral of the other’s spouse. For almost 75 years they had been friends and had shared so much. But even now, in their old age, there was one thing that one had not shared with the other. This one thing had not been uttered and the old man thought his friend never knew about it, but his friend did know about it. His friend knew that for years the other had been stealing from a local charity where he volunteered. Upon discovering this fact about his friend, an old man had to make a decision. He knew the stealing was wrong and wanted to say something to his friend, not to condemn or to hurt his friend, but to free his friend from a crime that had become a habit. But if he confronts his friend with the truth, will his friend go away or change his life? He must choose between staying silent and killing his conscience or saying something and possibly killing their friendship. Killing the friendship would break his heart and break the heart of his friend. But could he be a true friend if he did not share the truth? Truth that could help his friend gain freedom from a destructive pattern.
There was a time when Jesus performed a miracle and made a picnic for 5,000 people out of two loaves and five fish. This sensational event drew large crowds and they chased after him where ever he went. How many pastors and churches wish they had that effect on the general public? But Jesus turned to the crowds and said a truth that he knew many of them would not put up with. He knew that many in the crowd were there for the hype, sensation and the free lunch. But he wanted more for them. He wanted them to have the greater reality that the miracles were pointing them to. So, he shares with them that lunch only sustains them today, but he was the bread of life, bread that would sustain them forever. He said, “Unless you eat the flesh of the Son of Man and drink his blood, you have no life in yourselves.” (John 6) This is a strange way of saying it, but he knew that many in the crowd were thinking with their stomachs and not their minds and hearts. He knew that he could give them truth that would free them from destructive patterns in their lives, but they would have to think with their minds and hearts and not with their stomachs and emotions. He knew that some would walk away when he said it and I believe that broke his heart. He was not spouting off truth just to rub it in their faces. He was sharing truth that would transform their lives. He was speaking in metaphors, but they were too stuck in their physical realm to see the larger scale of reality. I believe his heart broke when so many walked away because he knew each and every person there better than they knew themselves. He knew them better than two old friends could ever know each other. But had he not shared the truth, no one would be changed. How could he say he loved anyone if he were not willing to share the truth that he knew would change their lives for the better? It was a truth that he not only shared with his words, but he shared it with his body. He shared it when he died on a cross for our sins and it broke his body, the bread, and spilt his blood, the drink. Whoever believes this truth will be changed forever. Whoever lives by this truth will not starve their soul any longer, but will have true life. This is the truth of love and not dogmatic traditions. This is the truth that brings freedom and not legalistic barriers. It is a truth that will cause division because in a fallen world where sin is present, people will either choose to separate from the truth or separate from sin. But His heart aches over those who separate from the truth.

Bard Button

We have not been thrilled with this feeding tube. It seems that if anything much thicker than cough syrup is pushed through it, the valve in the tube gets stuck open and it leaks. We have to include Diet Pepsi in the regimen of medicines each night just to clean the valve. I’ve tried to find other suggestions for how to use this thing, but it seems that most parents are reporting less than stellar performance for this particular feeding tube. We could dilute things with more water to thin them out, but she can’t handle much volume right now, so increasing the volume increase the opportunity for nausea and vomiting. That increases opportunities for aspiration and choking. So far the button has leaked both nights we have been home (of course it never did while we were in the hospital) and she has not tolerated food nearly as well as she did in the hospital. After 29 ml of formula yesterday afternoon her stomach suddenly became distended. She looked like she was 6 months pregnant. We decompressed her and got 85 ml of formula off of her. We were thankful that the decompression actually worked that time. She only got 200 ml yesterday out of her normal 800. We just pray she keeps hydrated enough and doesn’t have to go back into the hospital. We pray that this silly button starts to work properly.

Prayer: God Shows Up

Our time at the hospital was not fun and there were complications, but there was prayer. The previous entry can tell you about the complications, but this is to talk about the prayer. We had multiple people calling us to get updates to pray for us and pass on the prayer requests to others. We had at least four churches praying for Macayla and us and many individuals. This procedure was not major relative to many procedures we could face or that other children face very often. But that does not negate the need for prayer. I find that it is the more mundane difficulties and circumstances of life that wear me down. Give me a crisis and I will pray well and hold up well. I will more likely forget God in the midst of a flat tire or outpatient surgery. We had nurses praying for us. We had family and friends praying for us. We thank all of you for prayers, food, calls and support.
There were some nursing students on the floor while we were there and things worked out for Jennifer to give six or so students a mini-seminar on Battens disease, tube feeding, and patient care. Jennifer loves to educate. As the nursing students were leaving, one stayed behind and asked how she could pray for us. I was impressed a young lady her age had the courage to stay and pray with total strangers. Most college-age students would be too self conscious. She prayed for our family and our marriage. God showed up a lot over the last few days. Check out Jacob's page soon (December) to see how God showed up in his prayer time.

New Tube, No Fun

Macayla’s feeding tube was relocated on Wednesday. They removed the old tube and create a new hole a couple of centimeters over to put in a new tube. It was supposed to be a 45 minute process and we had decided to put in a tube called the “Mic-Key” since it is one we can change out at home. When the surgeon got in, he discovered that there wasn’t as much play in her stomach as we had hoped for. In order for these feeding tubes to work, they pull the stomach up against the abdomen wall. As it heals, the stomach basically adheres to the abdomen wall at that location. They had to make a bigger incision to free up the stomach a little more in order for it to stretch over better and pull up to the location of the new tube site. But this incision created a problem with the type of tube we had selected. The Mic-Key is held in place by a water-filled balloon inside and that was not going to be good next to this incision, so the doctor had to make a decision on the table and put in what is called a Bard Button. It has a more ridged flange inside. From the outside, it looks like the valve on a beach ball after it has been pushed down and is flush with the surface of the ball. It has a little flap with a stopper on it that folds over and closes it off and there is a valve inside the tube that is supposed to allow fluids to come in but not come out. We will use this for the next 4 weeks and then after she has healed we will change it out in the doctor’s office with a Mic-Key.
The surgery took an hour and 45 minutes and Macayla did well. But when she woke up from the anesthesia she threw up a bunch of blood that was left over from the surgery. She threw up bile twice more, once during a contrast study to make sure the feeding tube was working properly. It was a long day since we have to suction her every time she throws up to prevent her from suffocating. This bile and blood would have normally drained off of the stomach and into a trap that is connected to the feeding tube, but the trap was clean. Nothing was draining. We could push stuff in her feeding tube but we could not drain or decompress her. Decompression is important because it helps remove excess air and check for blood in her stomach contents. Without decompression, she would start throwing up again when we got home. We tried everything but it didn’t work and to the point we stayed an extra night in the hospital. We discovered that as we got more food and Pedialite in her stomach she decompressed better. The surgeon said the stomach needed to stretch back into position now and should work fine. Decompression has been more successful but inconsistent. But the button they had to put in her has been a pain to work with. The tube that attaches to it for feeds does not lock on so it easily comes out. We discovered this our first night home as I gave Macayla her meds. As I was pushing meds through the tube, the tube disconnected from the button on her tummy and spewed the medicines in her lap and chair instead of into her stomach. There was no chance of her shirt, pants or wheelchair having a seizure with all the meds they had on them. But we mixed up more meds gave her a dose and this time made sure the tube stayed in place. After we disconnected the tube, the button wouldn’t stop leaking. Stomach contents kept pouring out of it. The little valve inside was not working. We put the little stopper back in and to keep the stopper from coming out while Macayla slept, we put gauze and tape over it. Not ideal on a fresh surgical site. I hope things improve with this button or it will be a long 4 weeks.