Sunday, December 02, 2007
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.
Saturday, December 01, 2007
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.
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.
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.Monday, November 26, 2007
Plain Fact
My four-year-old, Jacob, and I were talking about buying Jennifer a Christmas present and I asked him what he thought his mom would like. He first said that she likes food and we should get her some food. (He also suggested we get this for his eye doctor since "Dr. Tony helps us so much.")
“Mom does like food,” I agreed. “What other things does she like?”
“She likes me,” Jacob said.
I agreed again and said, “But you already are a gift to us.”
In a very matter-of-fact tone he said, “Yes, I am. God sent me and I’m a present and everyone thinks I’m cute.”
I laughed a little and he said, “What’s so funny?”
Jacob wasn’t being conceited when he stated that everyone thinks he’s cute. Many times when we are around other people, he often hears them say that he is so cute. From his standpoint, it is just the truth. It is a plain fact that he has learned because so many people around him have reinforced it. What we may mistake for conceit is simply Jacob making a plain and true statement. We may think that God is conceited when He states that He is worthy to be worshiped and praised. We may think it is conceit when God says He should be at the center of our lives. But the fact is that it is true and just like Jacob, God is not trying to talk it up to make Him feel better about Himself. He is simply sharing the facts and it is therefore not conceit or vanity. Maybe this is why Jesus tells us to become like a child (not childish) so that we can recognize truth and trust it. As Jacob’s parent, I can attest that he is pretty darn cute. As an adopted son of God and as a parent that watches God work through Jacob, I can attest that our Father in heaven is worthy to be worshiped and praised.
“Mom does like food,” I agreed. “What other things does she like?”
“She likes me,” Jacob said.
I agreed again and said, “But you already are a gift to us.”
In a very matter-of-fact tone he said, “Yes, I am. God sent me and I’m a present and everyone thinks I’m cute.”
I laughed a little and he said, “What’s so funny?”
Jacob wasn’t being conceited when he stated that everyone thinks he’s cute. Many times when we are around other people, he often hears them say that he is so cute. From his standpoint, it is just the truth. It is a plain fact that he has learned because so many people around him have reinforced it. What we may mistake for conceit is simply Jacob making a plain and true statement. We may think that God is conceited when He states that He is worthy to be worshiped and praised. We may think it is conceit when God says He should be at the center of our lives. But the fact is that it is true and just like Jacob, God is not trying to talk it up to make Him feel better about Himself. He is simply sharing the facts and it is therefore not conceit or vanity. Maybe this is why Jesus tells us to become like a child (not childish) so that we can recognize truth and trust it. As Jacob’s parent, I can attest that he is pretty darn cute. As an adopted son of God and as a parent that watches God work through Jacob, I can attest that our Father in heaven is worthy to be worshiped and praised.
Thursday, November 22, 2007
Groaning With Thanksgiving
What makes Thanksgiving more than just another chilly Thursday? There is a movie called “Bruce Almighty” where Jim Carey’s character is endowed with all of God’s power for a few days (and only for a few blocks in Buffalo, NY). The movie is irreverent in places, but so are we. By the end of the movie Bruce is transformed from irreverent to illuminate. But on the bonus features of the DVD there are deleted scenes and one of which I wish had not be deleted from the movie. Bruce gets to view suffering in the world from God’s perspective and in one case in particular the person comes out on the other side of suffering with a beautiful life. God tells Bruce that to paint a portrait that beautiful, you have to use dark colors sometimes.
In reading the creation account in Genesis, I realized that God created the night by creating light. He also created other things such as “sea monsters” as they are called in the ancient text. All that He created, even the darkness, was called “very good.” But sin entered the world and change us and creation. The Hebrew word for “sea monster” would be used in later texts to indicate evil and even Satan. Just as Satan was once an angel, the “sea monsters” that were originally supposed to worship God now represent rebellion. All of creation was affected including plant and animal life. This is not what was intended by the original, but it happened and here we are. We now have suffering and death. We have pain and strife. Humans were created to be individuals with unique personalities, but sin brought contention to those differences. Thus, we struggle with one another.
But then I turned to Romans 8 and discovered what Paul wrote. He does not compare our present sufferings to the glory that is to be revealed in us who trust Christ. In a few verses, he recaps how creation itself groans to be set free from its fallen state. Its freedom will come when all of God’s children are revealed. Like creation, we also groan for our redemption. We also discover that God, His Spirit, groans for us when we don’t know how to pray in this fallen world. Creation groans, we groan, and God groans with us for the glory that is to be revealed. Why is it this way? Hope. Since all of creation is connected, a major point of Genesis 1, when humans fell in sin we brought creation with us. God will now redeem us through Christ and with that He redeems creation. This hope is found in Christ and by its very nature hope is centered on something we can’t always see. Thank God that our hope is supported by the groans and prayers of the Spirit Himself.
It is hard to understand many times as we watch the suffering around us, as we watch death creep into our families and culture. But we are not groaning by ourselves or to ourselves. We have a God that will work all of these things out for the good of those who love Him and are called according to His purpose. If we trust Him, Paul tells us that we are already called, justified, and glorified. If we trust and surrender to Christ, then nothing can separate us from the love of Christ. No suffering, death, life, good or evil can separate us from Him. In all these things we actually become overwhelming conquerors. We may suffer and have setbacks. We may face even death. Life may be hard and our world may seem confusing. But none of that will separate us from the Love of Christ if we trust Him. That is what makes Thanksgiving more than another chilly Thursday. The early settlers of this country faced more struggles than we can fathom. But they celebrated and were thankful anyway. We can be like them and celebrate the creation that was once “very good” and hope in the glory that surpasses our present sufferings. We can even be thankful for the beautiful portrait God is creating, even if it has some dark colors, as He works all things for the good of those who love Him. As we groan, we are thankful for the hope that is in Christ.
In reading the creation account in Genesis, I realized that God created the night by creating light. He also created other things such as “sea monsters” as they are called in the ancient text. All that He created, even the darkness, was called “very good.” But sin entered the world and change us and creation. The Hebrew word for “sea monster” would be used in later texts to indicate evil and even Satan. Just as Satan was once an angel, the “sea monsters” that were originally supposed to worship God now represent rebellion. All of creation was affected including plant and animal life. This is not what was intended by the original, but it happened and here we are. We now have suffering and death. We have pain and strife. Humans were created to be individuals with unique personalities, but sin brought contention to those differences. Thus, we struggle with one another.
But then I turned to Romans 8 and discovered what Paul wrote. He does not compare our present sufferings to the glory that is to be revealed in us who trust Christ. In a few verses, he recaps how creation itself groans to be set free from its fallen state. Its freedom will come when all of God’s children are revealed. Like creation, we also groan for our redemption. We also discover that God, His Spirit, groans for us when we don’t know how to pray in this fallen world. Creation groans, we groan, and God groans with us for the glory that is to be revealed. Why is it this way? Hope. Since all of creation is connected, a major point of Genesis 1, when humans fell in sin we brought creation with us. God will now redeem us through Christ and with that He redeems creation. This hope is found in Christ and by its very nature hope is centered on something we can’t always see. Thank God that our hope is supported by the groans and prayers of the Spirit Himself.
It is hard to understand many times as we watch the suffering around us, as we watch death creep into our families and culture. But we are not groaning by ourselves or to ourselves. We have a God that will work all of these things out for the good of those who love Him and are called according to His purpose. If we trust Him, Paul tells us that we are already called, justified, and glorified. If we trust and surrender to Christ, then nothing can separate us from the love of Christ. No suffering, death, life, good or evil can separate us from Him. In all these things we actually become overwhelming conquerors. We may suffer and have setbacks. We may face even death. Life may be hard and our world may seem confusing. But none of that will separate us from the Love of Christ if we trust Him. That is what makes Thanksgiving more than another chilly Thursday. The early settlers of this country faced more struggles than we can fathom. But they celebrated and were thankful anyway. We can be like them and celebrate the creation that was once “very good” and hope in the glory that surpasses our present sufferings. We can even be thankful for the beautiful portrait God is creating, even if it has some dark colors, as He works all things for the good of those who love Him. As we groan, we are thankful for the hope that is in Christ.
Wednesday, November 21, 2007
Pictures of Joy
I caught the end of a movie as I was flipping through channels. The credits started and the accompanying music was acoustic guitar. For a brief moment, I felt lighter. The music made me pause and for a brief moment I felt free, or more accurately, above the present circumstances of life. By free I do not mean escape. I actually mean free from, or above anxiety or weariness while still being in the midst of the present circumstances. It was a moment of joy and as soon as I recognized it for what it was, it was gone. C.S. Lewis wrote a book about this called Surprised by Joy and describes similar experiences. Sadly, these movie credits reminded me that I had been neglecting joy in my life lately. Joy can come unexpectedly, but God gives us gifts and talents that can bring that joy in doses that are somewhat more predictable. I have found that I can take a decent photograph from time to time. I’m by no means as talented as some photographers I have met. I have simply discovered that with a camera I can see something, a moment, and capture that moment. I can freeze it and keep it. It can be a smile on Macayla’s face or the sun light illuminating Jennifer’s hair just right. It may be Jacob in the middle of something important to him and all the while he is unaware he’s being photographed. It may be drops of water on a leaf that sparkle like diamonds in the morning sun. It may be a landscape or a sleeping child but it can be a moment of joy and with a camera I can capture it. But I agree with C.S. Lewis. Joy is a surprise and it only lasts in doses that are a moment in length. Once the moment passes, you can never quite experience it with the same intensity as the first time. The actual experience of Joy is always in the present. But that is what makes it so reflective of eternity.
We are limited because we are caught in time. Eternity, as far as I can tell, does not mean a timeline we will move along forever. We are not simply dots on that line and everything before us on that line is the future and everything behind us is the past. I believe that what God means by eternal is a full consummation of all time into the Present. I believe that the present more than the future or past is most like eternity. I think that is why a surprising moment of Joy is only a moment. In a fallen world like ours that is so trampled by the unchangeableness of our past and the uncertainty of our future, the present is where joy is experienced. It is the present joy that points us toward God and our eternal purpose in Him. But it is that present joy that can break the chains of the past and bring certainty to our future. That is why it is important that we all discover those gifts and talents that God gave us. That is why it is important that we live our lives doing what He has called us to do. For it is through those things that God helps us experience joy and draw closer to Him as well as become the person we were created to be. That is what photographs can help me remember. Looking at a photograph may not have the same intensity of joy as the moment I actually took the picture, but it can still remind me of the joy of that moment. I can capture those little moments of eternity and they remind me of the freedom I have in Him. Not freedom from my circumstances, but freedom in my circumstances.
We are limited because we are caught in time. Eternity, as far as I can tell, does not mean a timeline we will move along forever. We are not simply dots on that line and everything before us on that line is the future and everything behind us is the past. I believe that what God means by eternal is a full consummation of all time into the Present. I believe that the present more than the future or past is most like eternity. I think that is why a surprising moment of Joy is only a moment. In a fallen world like ours that is so trampled by the unchangeableness of our past and the uncertainty of our future, the present is where joy is experienced. It is the present joy that points us toward God and our eternal purpose in Him. But it is that present joy that can break the chains of the past and bring certainty to our future. That is why it is important that we all discover those gifts and talents that God gave us. That is why it is important that we live our lives doing what He has called us to do. For it is through those things that God helps us experience joy and draw closer to Him as well as become the person we were created to be. That is what photographs can help me remember. Looking at a photograph may not have the same intensity of joy as the moment I actually took the picture, but it can still remind me of the joy of that moment. I can capture those little moments of eternity and they remind me of the freedom I have in Him. Not freedom from my circumstances, but freedom in my circumstances.
Not Bored
We are not bored. I just had surgery on Friday to correct some complications from my manly surgery last December. Macayla will be having surgery next week to relocate her feeding tube. Jennifer will be having surgery to correct quite a bit of womanly issues in December. Our van apparently decided it was jealous of us getting all the attention, so it decided to blow a hydraulic hose on the wheelchair lift today that will require “surgery” tomorrow.
As it turns out Macayla’s tube site is not clearing up and in spite of several months of medications, dietary changes, endoscopy, cutting, cauterizing, and new tubes Macayla still is not tolerating her feedings and we have blood in her stomach. So the only option left at this point is to relocate her tube and start over fresh. We have decided to go with a different type of tube this time. The tube Macayla currently has (a “Genie”) is held in place by a flange on the inside of her stomach. It is removed by simply yanking it out. The flange is soft and pliable but it still causes trauma to the site when it is yanked, understandably so. It is not a pleasant thing to watch and it is certainly not pleasant for her to experience. We love the “Genie” system because it is easy to use and is very close to the skin so it doesn’t dangle and get caught on anything. But this method of replacement seems to be asking for trouble in Macayla’s case. So we are going to try a “Mickey” (and yes the also make a “Minnie”) because the Mickey has an inflatable balloon on the inside that holds it in place. It will require more attention on our part as the balloon is inflated with about 5 cc of water that should be changed monthly and every few months we will have to replace the tube, but we can do all of it ourselves at home. So, we hope that she will do well in surgery which may end up as out patient this time.
As it turns out Macayla’s tube site is not clearing up and in spite of several months of medications, dietary changes, endoscopy, cutting, cauterizing, and new tubes Macayla still is not tolerating her feedings and we have blood in her stomach. So the only option left at this point is to relocate her tube and start over fresh. We have decided to go with a different type of tube this time. The tube Macayla currently has (a “Genie”) is held in place by a flange on the inside of her stomach. It is removed by simply yanking it out. The flange is soft and pliable but it still causes trauma to the site when it is yanked, understandably so. It is not a pleasant thing to watch and it is certainly not pleasant for her to experience. We love the “Genie” system because it is easy to use and is very close to the skin so it doesn’t dangle and get caught on anything. But this method of replacement seems to be asking for trouble in Macayla’s case. So we are going to try a “Mickey” (and yes the also make a “Minnie”) because the Mickey has an inflatable balloon on the inside that holds it in place. It will require more attention on our part as the balloon is inflated with about 5 cc of water that should be changed monthly and every few months we will have to replace the tube, but we can do all of it ourselves at home. So, we hope that she will do well in surgery which may end up as out patient this time.
Tuesday, November 06, 2007
Punishment
I have met parents of special needs children or parents who have experienced the death of a child. On more than one occasion, I have heard some of these parents make a statement that this happened to their children as payback for past sins in their (the parents’) lives. They feel like it was God’s way of punishing them. How do we worship a God that allows our children to die?
There are many places in the Bible where God punishes sin with death. Individuals were often struck dead by God for disobedience and laws were given in Deuteronomy that require death if broken. We are at first appalled at this. We are amazed that anyone can call God “loving” if He would do these things. However, we forget who we are and who God is. God is righteous and just. Our sin makes us unrighteous. Our sin requires justice. We recognize that law breakers should be punished in our society. We scale the punishment for the crime. God has done the same thing but He didn’t have to. There is no such thing as degrees of perfection. God is not almost perfect or mostly perfect. He is perfect. He requires His creation to be perfect. When sin entered the world, it changed not only humans but creation as well. God would have been just in wiping out creation and starting over. The most amazing thing is that He did not wipe us out. This perfectly just God did not exercise His justice completely. He actually has preserved humans and creation in spite of our sins. However, we are left in a fallen world where death, disease, and sin persist. How does God interact with sinful humans in a fallen world? Mercy.
The parents I spoke with that made the statements that they thought God was punishing them have missed the big picture. If God truly punished each of us for our sins, we would all be dead, not just our children. The miracle in a world such as this is that disease and destruction are not more rampant than they are. There is a place in the Bible that records a man being put to death for sin, but not his own. God the Son became a man, Jesus, and was put to death on a cross for our sins for he never had any of his own. God does punish for sin. He did it at the cross. God may train us, otherwise known as discipline, but He has already doled out the punishment at the cross. The death of our children is a product of a fallen world, not punishment. God the Father put that punishment on His begotten Son to redeem us and this fallen world. He has given us time to surrender to His mercy by trusting in the justice of the cross. Macayla is a victim of this fallen world but she will also be free of its destructive tendencies soon. Her eyes are losing sight now, but soon her eyes will see with full clarity the extent of God’s mercy.
There are many places in the Bible where God punishes sin with death. Individuals were often struck dead by God for disobedience and laws were given in Deuteronomy that require death if broken. We are at first appalled at this. We are amazed that anyone can call God “loving” if He would do these things. However, we forget who we are and who God is. God is righteous and just. Our sin makes us unrighteous. Our sin requires justice. We recognize that law breakers should be punished in our society. We scale the punishment for the crime. God has done the same thing but He didn’t have to. There is no such thing as degrees of perfection. God is not almost perfect or mostly perfect. He is perfect. He requires His creation to be perfect. When sin entered the world, it changed not only humans but creation as well. God would have been just in wiping out creation and starting over. The most amazing thing is that He did not wipe us out. This perfectly just God did not exercise His justice completely. He actually has preserved humans and creation in spite of our sins. However, we are left in a fallen world where death, disease, and sin persist. How does God interact with sinful humans in a fallen world? Mercy.
The parents I spoke with that made the statements that they thought God was punishing them have missed the big picture. If God truly punished each of us for our sins, we would all be dead, not just our children. The miracle in a world such as this is that disease and destruction are not more rampant than they are. There is a place in the Bible that records a man being put to death for sin, but not his own. God the Son became a man, Jesus, and was put to death on a cross for our sins for he never had any of his own. God does punish for sin. He did it at the cross. God may train us, otherwise known as discipline, but He has already doled out the punishment at the cross. The death of our children is a product of a fallen world, not punishment. God the Father put that punishment on His begotten Son to redeem us and this fallen world. He has given us time to surrender to His mercy by trusting in the justice of the cross. Macayla is a victim of this fallen world but she will also be free of its destructive tendencies soon. Her eyes are losing sight now, but soon her eyes will see with full clarity the extent of God’s mercy.
More Blood
Macayla’s recovery was good from her procedure but last week she started having bright, red blood in her stomach. She has had a little more today. We aren’t sure what is happening since she had no indication of bleeding for almost two weeks and then suddenly it started again. We did some blood work on Friday to check levels and clotting but we anticipate that will be all normal. It is certainly frustrating when you cannot figure out what is causing a problem or how to fix the problem. She is not tolerating her food and we still have not gotten her up to full calories. We are hoping that the doctor can give us some insight soon as to what we might can do.
Thursday, October 18, 2007
Scoped Out
Macayla went in yesterday for a endoscopy of her upper GI. We had been holding off on this because it is a procedure that requires general anesthesia and that always carries risk. But after trying medications and diet changes Macayla is still having blood in her stomach and she was not tolerating her feeds again this weekend. So, an opening came up in the OR and the surgeon worked her in yesterday. Her esophagus and stomach lining looked great. As suspected, the problem has been around the feeding tube. There was a significant amount of granulation around the tube site inside the stomach. They replaced the tube and removed all excess tissue and the surgeon feels like this should correct the problem. Macayla came through great and without vomiting in recovery or the ride home. She is recovering today and is definitely sore and tired. She tenses up anytime we give her medicine and was feeling it when I hooked up her feeding pump this morning. She only got 270 ml of formula in yesterday and that is compared to the 800 she should get, so she is low on energy. But so far so good this morning. I guess there is always the chance that new granulation will come back and if it does, we will be asking if there is anything else we can do. That may or may not include putting the feeding tube in a new location. Bottom line is that Macayla just seems predisposed to this problem. We told Jacob that Macayla had to go to the hospital to have pictures taken of the inside of her stomach. He said he wanted to see the pictures when they did it. We told him that we couldn’t go into the OR with Macayla while it was being done but he was insistent on seeing pictures so I told him we would ask for copies. I warned him that the pictures may be yucky and he said, “I know but I still want to see them.” He is definitely his mama’s son. The doctor sent Jacob some pictures home and we got to see the granulation tissue and the before and after shots of the site and its repair. He didn’t throw up or anything.
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