Sunday, October 31, 2004
Q: How is Luke doing?
A: The most frequent question I get. My usual reply is that Luke is doing Great! Luke continues to make baby step improvements and he is doing great considering what he went through. That said, don't misunderstand me, Luke doesn't walk, talk and he has a long ways to go to recover. All that said, he is doing great.
Now, how is Luke doing today, this very moment? Not so good. We think he might have a cold or allergies, as his secretions have increased a lot the last two days. He needs to be suctioned a lot more Fri, Sat and now Sun. He has not slept in the past two days with the exception of an hour nap here or there. The weekends we take on Luke's care, just to give our house a break from nurses all the time. We have great nurses, it is just that it is hard always having someone around.
Please pray that Luke will sleep, he is sooo tired. Also, pray that he will get over this cold, as this could become pneumonia, which would be really bad. Pray that God will give us wisdom in how to best care for Luke.
Also, pray for the Searles family as a whole, we are pretty tired and could use a bit of sleep, our sleep aligns with Luke's. Also, we feel a heavy spiritual attack, we have noticed an increase in the boys arguing with each other, as well as other things. Please pray that God's presence will bring a peace and calm to our house.
Q: What is HBOT?
A: HBOT stands for HyperBaric Oxygenation Therapy. The basic process is a patient is placed in a hyperbaric chamber just like the ones used for treating divers. The chamber is filled with 100% oxygen and then the atmospheric pressure is raised to ~3 atmospheres. By increasing the pressure, it is the equivalent of giving a person 140% oxygen. In Luke's condition, there are brain cells that are alive and functioning, there are brain cells that are dead and there are brain cells that are what they call idling. The idling brain cells are alive, but not functioning to the fullest extent and the extra oxygen can help revive these brain cells to being alert and full function. I have read stories of patients that have regained significant capabilities after many treatments. One story, a little boy that nearly drowned at age 2, similar to Luke. After 200+ treatments, he has regained much of the function he had prior to the accident. We are hoping for a similar result for Luke.
Q: We have been wondering if you are still thinking about trying the hyperbaric treatments (HBOT) for Luke in the future?
A: Yes, it is not a matter of if we try HBOT, but a matter of when. I still believe that this is the most promising of treatments out there. Recently Sue went to her Chiropractor and they were talking about Luke. He told her that he is interested in buying a hyperbaric chamber that could be used for HBOT for Luke. He has a room there at his office to be able to put the chamber. Needless to say, we are amazed at how God is bringing all things together for His glory. Pray that the details for this would happen.
Q: How can we help? Do you need someone to watch Luke and give you a break? Do you need money? I just want to help.
A: These are questions, that I am asked regularly, so let me answer them for everyone's benefit.
First, how can I help? I know it doesn't seem like much, but the biggest, most important thing you can possibly do for Luke, is pray. I know this sounds so simple and seems to miss the mark, but let me tell you as a father whose heart is breaking for his son, to know that there are people out there that are praying, people that we have never meet, is more important then anything. Many are following Luke's progress even if they don't post, Rena is right, the ones that do post are just the tip of the proverbial ice berg!
Do you need someone to watch Luke and give you a break? Right now, we have nurses at night Sun-Thu (10:30pm-6:30am) and during the day Mon-Fri (9am-5pm). We choose to not have nurses on the weekend as a break from having people in our home. In order for people to help, they have to be trained in how to care for Luke. Right now, we have really great nurses and so there isn't a need, this may change, I will let you know if it does.
Do you need money? I am reluctant to even bring this one up. The answer is not a simple one. Right now, no, the bills are all paid and we are doing great, God is supplying all our need. That said, I don't know what the future holds. As I look at the cost of HBOT with 200 treatments being between $15,000 and $30,000, depending on where you go, I must admit, I don't know how it will all work out. That said, I do know who holds the future and the God I serve owns it all. In Philippians, it says, "And my God shall supply all your need according to His riches in glory in Christ Jesus". I have been counseled by some that I should ask for money while there is great interest in Luke's story. I will never use Luke to get something we don't need, I will never ask for help when there isn't a need. Frankly, I am not trusting in you and your abilities, nor am I trusting in my own abilities, I am trusting in God and Him alone. I know God has a plan for meeting our needs, and that includes HBOT and whatever else will come our way, I am not worried one iota. His plan may include having many of you help, and then again, it may not. Right now, I am not sure what the future holds, it is hard to see much beyond today. All of that said, when a need becomes apparent, I will let you know.
I want to finish with two short stories about how lives are being touched by Luke's story and the ripple affect.
A friend from work was recently on an airplane and he began talking with the person next to him. Soon they were talking about God and spiritual things. Part of the way into the conversation, he shared Luke's story and how it had impacted his relationship with Christ. A seed was sown in a young woman's life.
Another friend recently told me that he began going back to church as a result of reading the Luke's story and the realization of what it means to be a follower of Christ. A family touched.
Two lives touched by a little boy named Luke and his family. Frankly, I am humbled that God would use my family to touch so many lives, I really don't feel up to the task. Lord Thank You for touching hearts for your kingdom's sake, Amen.
If you have a story of how Luke's story has impacted you, or how you have been able to share Luke's story to point others to Christ, I would love to hear them, please post, even if it is anonymous.
Well, I took so long to write that he finally fell asleep. Thanks for praying.
Sunday, October 24, 2004
Q: question... I hope it is okay to ask... the other children... how are they doing? How are the little guys doing?
A: First, yes, it is okay to ask questions; in fact it helps me to know what to write. I will go through each one and give you an update along with a PR (Prayer Requests).
Daniel - As you know he is attending a school of ministry and loving it. He is really busy, so we only see him on the weekend and sometimes every other weekend. The Lord is stretching Daniel in new ways and increasing his faith to a new level. His host family has been a big blessing to him. They have 5 children and homeschool, so it is a normal busy house, just like home. PR: Please pray that God will continue to reveal himself to Daniel and that he will give Daniel clarity about future ministry.
Amy - She turned 17 last week. Where does the time go? My little girl has turned into a beautiful young woman, although she will always be my little girl. Amy is a mature 17 year old and has really stepped up to help with caring for Luke. Amy is teaching swimming at the YMCA as part of the homeschool PE program and loves it. She also likes to read, watch movies with Natalie, play the piano and enjoys crafts. She started making a quilt last night; this will be her first one. PR: Pray that we (Sue and I) will not lean on Amy too much and that she will be able to be a normal 17 year old.
Natalie - Here too, my little girl (15 yr) is becoming a young woman. Natalie loves to play the piano, read, watch movies with Amy and knitting. She began knitting a scarf last night. Natalie's flag football team won the championship at the YMCA homeschool PE program. She play offensive and defensive line...Hmmm...Some how she seems a bit petite for a lineman...Yeah, but they Won!! PR: Natalie was supposed to get her drivers permit back in August, but we were on a trip and the Monday after we returned home was the day of Luke’s near drowning. Pray that we will be able to take her to get her permit and that she will pass the test.
Isaiah - Zaya as we call him, began taking swimming lessons as part of the YMCA homeschool PE program. He loves to swim and just moved up to the next level, so he is now a super pike. He is doing well and now that Mama is back home, seems to be adjusting to the routine. PR: Pray that he and Ezekiel will be best friends.
Ezekiel - Zeke is a busy, busy boy, he takes after Zaya :) He is very animated and says some of the funniest things. He is either really happy or kinda grumpy. There isn’t a lot of middle ground with Zeke. He too seems to be adjusting to Luke being home. Many mornings, he will get up before the other kids and go into Luke's room and climb up on a step stool and say "Good morning Luke!". In a little more then a week, Zeke will be turning 4, the time just flies.
Well, as you can see, questions help me know what to write, so keep them coming. Actually, I wrote this once and then the PC swallowed it and I had to write it again, so it might not be as long as it was. And you are probably saying "that’s okay" :)
Take care, and may God bless you Sunday as you worship Him.
Thursday, October 21, 2004
A: Well, there are a couple of ways. First, we have an Oximeter that monitors heart rate and oxygen saturation level. Also we have an apnea monitor. The two monitors will alarm if his heart rate goes too high or too low, his saturation goes too low or he stops breathing. We have a baby monitor right next to the monitors and the receiver in our room. When the alarm goes off, it will wake you up. The other way we know he is awake, is his secretions usually increase when he first wakes, so he will gurgle as the secretions bubble in his trach. Here again the baby monitor helps us hear it from our room.
Q: Can you take Luke out much, or do you have to keep him at home most of the time?
A: We do take Luke out some, although it is quite a chore. We normally take him to church on Sunday and sometimes on Wednesday night. Our church is a block from our house, so we usually walk with him in his wheelchair. We do take him to doctors appointments and we have one on Friday 10/21 with the Gastrologist and dietician.
Q: How's the nursing coming along? Has your family finally started to adjust?
A: Great question! We are beginning to fall into a bit of a routine. We have 16 hours per day nursing for now. We have landed on a regular group of nurses that come each week. Luke is becoming more comfortable with them and this has been a huge blessing.
Regarding the prayer for Luke's complete healing. My perspective is this, I pray daily that today will be the day that God heals Luke instantly, that he will revive every brain cell and that Luke will rise up and walk, talk and be the little boy that we all know and love. On the other hand, I also pray for the baby steps, the immediate needs in Luke's body, what does he need for today. I dont think I am contradictory in praying both sides of this coin. First, is God able to heal instantly as well as step by step? The answer is ABSOLUTELY, there is NO DOUBT in my mind in God's ability to heal Luke. Is it only dependent on my diligence in prayer, partially, we are instructed to seek, ask and knock with persistance. It comes down to God is sovereign and he can choose to heal Luke today, tomorrow or next week. There have been many times in Sue and my life together where we have persisted in prayer over a particular situation only to see God move in a miraculous way. For years, we have prayed that God would give me a testimony at work, do you think I have a testimony now. All that said, I do believe that one day Luke will wake up and it will be the day that God will choose to heal Luke. My faith does not depend on God to heal Luke, but on God and His character alone. Finally, Julie, I too dont want to be ungrateful for what God has done in the baby steps, I will take them and say Thank You Lord. However, I will persist for God to heal Luke and that he will rise and walk. To your post, I say AMEN!
Teena, you mention feeling connected and that is one of the things that truly has amazed me about this blog. While there are many that are follow Luke's story that we don't know, we are connected and I look forward to being able to meet many of you here on earth face to face.
Q: How is Luke doing with his sleep? Is Sue getting any sleep?
A: Luke is getting between 4 to 8 hours sleep, usually in a few broken up blocks of time. Sue is getting some sleep about 6 hours a night. I find that the sleep we are getting is not a deep, deep sleep, but it is rest.
Thank you for all the questions and please feel free to ask other relevant questions.
Wednesday, October 20, 2004
Does Luke cry when he's awake or just seem uncomfortable?
First, Luke doesn't make any noise with his voice. This is due to the trach bypassing his vocal cords. However we have noticed a few times that he has had tears in his eyes, usually when he is stressed.
You said Sue was the only one who could calm him and I was just wondering how he expresses his needs?
Luke isn't able to express his needs in terms of "I am hungry" or "I need my diaper changed". That said, we do watch Luke's body language to understand is he relaxing or is he tense and tight. When he becomes stressed we notice a couple of things. First his heart rate will rise when he is stressed. We watch the oximeter that measures heart rate and oxygen saturation to determine is he stressed. Something else we have noticed is when he gets stressed, his face will have little red patches, this is probably an indication his BP is rising, although we don't have any way to really know.
I hope these answers help, and please feel free to ask other questions relative to Luke's condition.
Sunday, October 17, 2004
I have talked with many people who are following Luke's story via the blog. Many have said they had not figured out how to create an account so they could post comments. I have decided to try allowing anonymous comments again so there could be a broader group of contributors. I would ask that when you do post under anonymous that you sign it at the end. Thank you for all of the comments, they mean alot to Sue and I and the kids.
Thursday, October 14, 2004
We went to the Dr the other day and it went well. The doctor agreed to reduce the nursing to 16 hours/day. This is great news. Since Luke came home from the hospital, we have had a nurse in the house 24 hrs / day with a couple exceptions. It is nice to be able to have a little family time alone. Luke seems to be swallowing more and more each day, thank you for praying. The doctor said that they would not do another test to check his swallowing before spring. My hope and prayer is not only will Luke be swallowing, but that he will walk into the Dr office at that visit. We seem to be finding some routine in the midst of all of this, although at times its hard to be sure.
Sue and the baby girl are doing well. Last night the baby was kicking big time. In spite of that, Sue was able to get a good block of sleep, in fact she is still sleeping.
Amy turned 17 yesterday and we will be celebrating her birthday on Saturday when Daniel is home from school. Happy Birthday Amy, we Love You!
You might be wondering why I titled this post "Blessed be the name of the Lord". Well, it is the name of a song written by Matt Redman and recorded by a group Tree 63. This song has been a real encouragement to me. At times I begin to look at the circumstances instead of keeping my eyes on Jesus and as a result, I become discouraged. I find that when I listened to this song and choose to Bless the name of the Lord, that I am the one that gets blessed. One evening I was listening to this song and I thought about Job and so I decided to read the book of Job. Job is a man of God that is very prosperous. In the first chapter Satan gets permission to attack Job and takes all of Job's livestock and kills all of his childerern (10). To say that Job's response in Job 1:20-22 surprised me would be an understatement. He falls to the ground and worships God. He acknowledges God's sovereignty to "give and take away". Then he chooses to bless the name of the Lord. Wow! In the last part of v22 it says "....nor charge God with wrong." In other words he didn't blame God for what he was going through. It was through the act of worship and choosing to Bless the name of the Lord, that Job found freedom from his troubles.
In Job 2:9 Job's wife says to him "...curse God and die!" Job's response is amazing. He says to her "Shall we indeed accept good from God, and shall we not accept adversity?” Wow! Accept adversity, now this is a foreign concept to most of us.
As I have meditated on this song and Job's situation, it has been a huge victory for me. As I began to choose to Bless the name of the Lord and accept the adversity that I am (we are) going through, there is a freedom that comes with it. It is not to say that there are not moments of challenge, trial and discouragement, but when they come, it is a matter of acknowledging Him and Blessing his Name. It is a choice that each of us has to make each day, what will you choose? We are to pickup our cross daily and follow him. I am not sure what cross he has given for you to bear, but I do know that if you will let him, he will help you bear it. I recently read a quote that says "The will of God will not take you where the grace of God cannot keep you." God does not give us more then we are able to bear. What will you choose today? Will you choose to Bless the name of the Lord and follow Him? Or will you go it alone and struggle under the weight of a mighty cross. Join me on this journey we call life and choose to follow Him. If you are not sure how, then send me an e-mail at email@example.com and we can talk more about it one on one.
Thank you Matt for writing the song and thank you Job for living it.
Here are the words to the song by Matt Redman
Blessed be Your Name, in the land that is plentiful,
Where the streams of abundance flow, blessed be Your Name.
Blessed be Your Name, when I’m found in the desert place
When I walk through the wilderness, blessed be Your Name.
Every blessing You pour out I’ll turn back to praise,
When the darkness closes in, Lord, still I will say,
Blessed be the Name of the Lord, blessed be Your Name
Blessed be the Name of the Lord, blessed be Your glorious Name
Blessed be Your Name, when the sun’s shining down on me
When the world’s all as it should be, blessed be Your Name
Blessed be Your Name, on the road marked with suffering
Though there’s pain in the offering, blessed be Your Name
Every blessing You pour out I’ll turn back to praise
When the darkness closes in, Lord, still I will say
You give and take away, You give and take away,
My heart will choose to say, Lord, Blessed be your name
Matt Redman & Beth Redman
© 2002 Thankyou Music
Sunday, October 10, 2004
He doesn't walk nor talk, however he does recognize voices and turns his head and eyes in their direction.
He swallows and coughs a couple times each day, this is really good, please pray that it will increase to where he is able to maintain his airway, so the trach can be removed.
His eyes do move from side to side. The other morning I was holding him and rocking back and forth and I noticed that his eyes were tracking the light over head. Thank You Lord.
I was told that he smiled today, although I didn't see it myself.
He wears splints on his hand, arms and feet every couple hours during the day to keep his joints and muscles flexible. He has been more stiff lately, not wanting to bend his arms or legs. Please pray that he will remain flexible and not stiff.
He takes a couple of short naps during the day and sleeps about 7 hours at night. His sleep at night hasn't been in one block since we left the hospital. Please pray he would sleep 8-10 hours each night and that it would be in a continuous block.
Tomorrow we have a Doctors appointment with a pediatrician and on Tuesday with his pulmonologist. Please pray that the doctors visits go well and don't stress or wear Luke out. Also pray that God will give Sue and I wisdom as we are advocates for Luke's care.
We are still waiting for nursing to get into a routine, and just about the time it settles, we will have to change as the 24 hour nursing is for the first 3 weeks only. Pray that God will provide clarity and direction on what the nursing schedule should be.
Finally, I ask that while you pray for baby steps for Luke's recovery, that you would also remember to pray for Luke's complete restoration. I truly believe in my heart that we will see a day when Luke will give testimony with his own voice of God's saving mercy in his life.
Thursday, October 07, 2004
Here is a list of our current prayer needs:
- Luke is not sleeping well at night, only a few (3-4) at a time. Please pray he will sleep through the night.
- Pray that Luke will regain his ability to swallow and cough.
- Luke needs to be suctioned upwards of 30 times each day, please pray that he wont need to be suctioned as much, or at all, if he would swallow and maintain his airway.
- We still have not settled into a routine with the night nurses, every other night we have a new nurse that we have not meet before. Please pray that we will be able to establish a routine.
- Please pray that Sue will be able to get good sleep each night. Many nights when Luke doesn't sleep she will get up for a few hours and rock him. Needless to say, this affects the quality of her sleep.
- Please pray for wisdom for Sue and I as there are many decisions we have to make each day regarding Lukes care, in addition to all of the normal decisions of life.
Thank you for your prayers, I wish I could talk face to face with each of you and thank you in person for seeking the Lord on Luke's behalf.
Jer 29:11 NKJV For I know the thoughts that I think toward you, says the Lord, thoughts of peace and not of evil, to give you a future and a hope.
Our hope is in God, thank you for coming along side us.
Sunday, October 03, 2004
Saturday, October 02, 2004
I returned to work for the first time on Friday and I must admit it was hard, but also very good to be back. One of my friends at work asked how things were working out with the nurses. I want to let everyone know that it seems to be working out very well. There are I think 6 nurses that care for Luke in 12 hour shifts (8am-8pm and 8pm-8am). God has been faithful to provide us with a good nursing staff.
So much happens over the period of a few days, that it is hard to remember it all and blog about it. I wish I had more time to blog, but it seems that my only time is late in the evening when most everyone is gone to bed. If you have reasonable questions, feel free to ask them, all I ask is that you would be sensative to my family, as they do read this.
Luke is doing very well considering he is coming up on 5 weeks since the accident. He breaths quite well with room air. He gets nutrition from a formula that he recieves via his feeding tube. He gets the formula for 18 hours and then has a 6 hour break, before starting it again. Luke has medications for seizures, secretions, antacid, a muscle relaxant for spasms.
Here are a few specific things to pray for:
- Luke has not been sleeping well the past few nights, please pray that he will get on to a good schedule of sleeping at night and awake during the day.
- Luke favors his right side, with his eyes, his head, in most ways, please pray that God will heal Luke and he wont favor his right side as much.
- Luke needs to have his trach suctioned upwards of 30 times per day, please pray that he will be able to cough, swallow and the secretions will diminsh and he wont need to be suctioned as much, in fact, how about not needing to be suctioned at all? Yes, Lord!
- Please pray for Sue and I as we continue to face daily decsions about Lukes care and we need wisdom from God.
- Finally, as Sue and I are advocates for Luke's care and continue to fight for the care he deserves, pray that God will give us favor and we wont have to battle with our insurance over what to cover or not. I dont want to receive anything we dont deserve, however I do want Luke to get the care that we have paid for and is due him.
I love you all so much and I continue to stand in awe of the God I serve and the Love he has shown us during this time.