Friday, February 27, 2009

Luke is getting better and better everyday!

I've been meaning to sit down for days and update the blog, I really wanted to wait until I was able to post some pictures, but I don't have time once again, but will soon. Luke is finally doing better, he actually stayed awake most of the day today, which was huge progress since all he wanted to do for the last month was sleep. He has also been weaned off the oxygen during the day and most of the night last night, though tonight he is on a little bit. This is a big answer to prayer, it seems like Lukie man is deciding to come back to us again, Praise God.

Luke's sleep study was an extremely hard night for me, first of all I was unable to see how he was doing the entire time I was there, as they monitored his vitals in a different room. The only way I knew he was not doing well was when a nurse came into say he was desating. I was not happy with the fact that they allowed his oxygen numbers to get so very low before they would do anything about it, he got down to the 70's one time and the 80's on numerous occasions throughout the study. I found out that he would be done around 3:30 a.m. so I asked if we could go home at that time and they said we could, so we were home and in our own beds by 5:00 a.m that morning. I did get a few hours of sleep that night, but not many.

On Thursday morning Luke's Pulmonologist called to let me know the results of his study, they were not good, as expected. He told me that Luke has severe sleep apnea, which means that he is definitely recommending that he get his tonsils and adnoids out as soon as possible. He also told me that Luke was having seizures all through out the night. I wasn't really surprised to hear this as I've thought on numerous occasions recently that I'd seen some seizure activity going on. The Dr. told me he would contact a ENT and Neurologist to get opinions on what should be our next steps. I'm still waiting to hear from these Docs on what exactly will be happening.

I was finally able to get Luke back to Matt the Rolfer today, we hadn't seen him in about two months, we are sad to say today will be our last appointment with him as he is no longer coming to Poulsbo anymore. We might go see him every once in a great while, but since he will be a good 2 1/2 hour drive it is not very convient to say the least. Luke also had a HBOT treatment today, he did great while he was diving and was so alert the entire time. Progress is a great thing!

The last few weeks have really taken a toll on me, I am exhausted, tired, fatigued and plain old worn out. I'm hoping after this weekend I can get caught up on some sleep and relaxation. Tomorrow we are planning a Women's Fun Day for our church, I know it will be a lot of fun, if I can just find the energy. On Sunday we are excited to have some of Gordy's family over, it's been awhile since we've seen some of them and are looking forward to getting caught up with all their news. Monday I'm thinking about finally getting my bathroom painted, its been needing to be done since Daniel tiled the bathtub, after that I should be able to slow down a bit, then again, Tuesday is filled with appointments, but Wednesday is absolutely empty and I'm trying so hard not to fill it up!

Thank you once again for all the prayer support, you all have carried us this past few months, we just couldn't of made it without y'all.

Love in Christ,
Luke's Mommy Suzi

PS If you haven't had a chance to visit the new sites I've added on to Luke's Prayer Links check them out. Noah is a precious little 2 year old that is having a very hard time right now and Mia is a sweet little baby that was born earlier in the month that is needing our prayers today. Check out their sites and let them know you are praying for them, it will mean so much to them to know.

Tuesday, February 24, 2009

Luke's Sleep Study is tonight, please be praying for answers

I got woke up this morning with a call from the Sleep Study Center saying they had a cancellation for tonight, do you want to take it? I wasn't sure because it is Gordy's Birthday and the thought of having to spend the night at a sleep center did not sound at all appealing. Though he assured me that we should take it because if we didn't we wouldn't be able to get in until March 19th. I told them that Luke is sick and on oxygen, would that be a problem? They said to call his Dr. and ask him what he thought. After calling Luke's pulmonologist it is decided that "yes," Luke should go ahead with the study. Please be praying with us that we will get some much needed answers tonight. Also that I can get in a few winks of sleep tonight, as I'm already extremely sleep deprived today.

Love in Christ,
Luke's Mommy Suzi

Sunday, February 22, 2009

Home again, home again, jiggety jig! Luke has pneumonia and is doing a little better, Hallelujah!

We found out tonight that Luke has pneumonia. The Dr. that saw Luke at the Urgent Care says that he thinks that perhaps he may of had it weeks ago after his first x-ray. He is doing pretty good for now, less alarms tonight than in the past few nights. His heart rate is actually down around where it should be for at night also. The Dr. prescribed an antibiotic and an steroid. I hope and pray that this will finally get Luke healthy again. The Dr. Luke saw this evening was very through, finally a Dr. not willing to give up until he knew what the problem was, thank you Lord for answered prayers.

Thank you once again for your prayers, we love y'all,
Luke's Mommy Suzi

Luke is heading to Urgent Care again!

I'm getting ready to take Luke into the Urgent Care. He is running a fever, coughing out some yucky yellow gunk and has a super high heart rate, plus he's still on quite a bit of oxygen. I'm praying that he get's another antibiotic, though I'm thinking that they might send us over to Mary Bridge. I'm open to whatever, I want Luke to get better, I want answers, will you please pray that we can get to the bottom of this sickness once and for all.

Love in Christ,
Luke's Mommy Suzi

Saturday, February 21, 2009

We are praying and praying, and waiting and waiting, to see Luke healed today!

Here is today's reading from my Streams In The Desert devotional book:

February 21
Be still before the LORD and wait patiently for Him. (Psalms 37:7)
Have you prayed and prayed, and waited and waited, and still you see no evidence of an answer? Are you tired of seeing no movement? Are you at the point of giving up? Then perhaps you have not waited in the right way, which removes you from the right place - the place where the Lord can meet you.

"Wait for it patiently"
(Rom. 8:25). Patience eliminates worry. The Lord said He would come, and His promise is equal to His presence. Patience eliminates weeping. Why feel sad and discouraged? He knows your needs better than you do, and His purpose in waiting is to receive more glory through it. Patience eliminates self-works. "The work of God is this: to believe" (John 6:29), and once you believe, you may know all is well. Patience eliminates all want. Perhaps your desire to receive what you want is stronger than your desire for the will of God to be fulfilled.

Patience eliminates all
weakness. Instead of thinking of waiting as being wasted time, realize that God is preparing His resources and strengthening you as well. Patience eliminates all wobbling. "He touched me and raised me to my feet" (Dan. 8:18). God's foundations are steady, and when we have His patience within, we are steady while we wait. Patience yields worship. Sometimes the best part of praiseful waiting is experiencing "great endurance and patience. . . joyfully" (Col. 1:11). While you wait, "let [all these aspects of] patience have her perfect work" (James 1:4 kjv), and you will be greatly enriched. C.H.P.

Hold steady when the fires burn,
When inner lessons come to learn,
And from this path there seems no turn -
"Let patience have her perfect work."

What a needed word for me today. Waiting is so hard, being patient is almost impossible, but realizing that this is exactly what God wants me to do makes it possible. Luke is desperately in need of a miraculous touch from Jesus today. Have you gotten tired of me asking and asking and asking for you all to pray? I hope not, I'm sorry if you are, but I can not stop asking because I know God hears our prayers and is going to answer them soon! Please join us in praying for:
  • Luke's tonsil to get smaller again, they are blocking his airway causing severe obstruction problems, he stops breathing off and on all night long.
  • For him to get off the oxygen that he has been on for the past month.
  • For the alarms to stop going off all night long.
  • For Gordy and I, we are exhausted, sleepless nights, stress, worry, we are holding tight onto Jesus' hand, but the journey has become so hard lately.
Love in Christ,
Luke's Mommy Suzi

Luke and Washington's weather have a lot in common, they can both change in a matter of minutes!

Gordy made the comment on the way home from the Hospital tonight that Luke and the weather here in Washington have a lot in common, both the weather and Luke can change significantly in a matter of minutes. We went into the ER tonight and the Dr. there didn't think his numbers were as bad as we were told earlier in the evening. Luke looked pretty good and he was actually breathing ok, though he was still on one liter of oxygen. They put a special cannula on him that showed what his carbon dioxide output was and he looked pretty good, though not perfect. The Dr. didn't think that Luke needed to stay at the Hospital and we totally agreed with him, he said that we definitely need to get him into a ENT ASAP to get his tonsils taken care of. I guess there is a new ENT at Mary Bridge so he gave us his number to call, hopefully we will be able to get into see him this up coming week.

Thank you for your prayers, we were put into the same room that Luke had been put into when he was only a week old with RSV. That day we were sent to the Hospital because Luke was not getting better, on our way there we got calls out for prayer and Luke immediately began to improve. The Dr. finally sent us home, wondering why we had thought he was emergency. Praise God for faithful family and friends that know how to call out to God during our times of need.

I'm hoping and praying that our next entry in Luke's blog will be good news!

Love in Christ,
Luke's Mommy Suzi

Friday, February 20, 2009

We are on the way to take Luke to the Hospital, he had some bad blood test results today

I took Luke into the Dr. today and it was decided to run some blood work on him. I just got a call from one of the Docs saying that Luke's carbon dioxide levels are too high and his white blood count is elevated. He said that we need to take Luke into the Hospital so that they can run another blood gas test on him to see exactly what is going on and also find out why his white blood count is high.

Please be praying that they can take care of this situation quickly and that we won't have to be there for long. Also be praying that he won't catch anything while he is there, it kind of freaks me out to take him to the Hospital, so many germs. Would you also say a pray for Lily she has been not feeling so hot the last few days and I hate leaving her at home when she wants "Mama" to hold her.

Thank you for your prayers we sure do appreciate y'all.

Love in Christ,
Luke's Mommy Sue

It's been 37 days and Luke is still not doing better, we find comfort in knowing that God has a Plan!

I would love to sit down tonight and tell you all that Luke is doing great but alas, it is not so. Luke is not doing good tonight, no not one bit, he sounds terrible and has been alarming like crazy. He's been on oxygen for the last few days again, not a lot during the day, but quite a bit a night. He did seem to be doing a bit better a few days ago, but it seems whenever we think he has turned a corner for the good, he's right back to were he was at the beginning of this sickness.

He's not the only child that has been sick, Ezekiel, Lily and Isaiah have all been sick the last few days. I'm happy to say that Ezekiel seems to be completely over the bug that he had, Lily is still complaining about a stomach ache and now Isaiah seems to be coming down with something. Tonight I was thanking the Lord that all this did not hit us during the Holidays, it would of been so hard to go through all this without the help of Amy. I wonder at times if Luke just keeps catching whatever is going around again and again.

Please will you once again put Luke back into your prayers, we are desperate for a healing touch from Jesus. It is so draining to go through this long season that doesn't seem to end, I know God has not abandoned us, in fact last night I came across this scripture and it really ministered to my heart: "I know what I'm doing. I have it all planned out - plans to take care of you, not abandon you, plans to give you the future you hope for. When you call on me, when you come and pray to me, I'll listen. When you come looking for me, you'll find me. Yes, when you get serious about finding me and want it more than anything else. I'll make sure you won't be disappointed." Jeremiah 29:11 -14 (MSG) This scripture is full comfort and help during this very trying time, it's hard to remember at times like this that God sees the bigger picture than what is happening right this minute, but I know that He does and I have to trust Him. To learn to trust Him and know that He will not abandon us is so amazing, it can be quite a challenge at times, but I know that's exactly where He wants us to be.

Love in Christ,
Luke's Mommy Suzi

Saturday, February 14, 2009

Happy Valentine's Day

Roses are Red
Violets are Blue
Jesus Loves You
And The Searles Do Too!

Thursday, February 12, 2009

Some days are definitely harder than others!

Some days are just hard! I had planned to take the kids to our annual Homeschool Valentine's Day Bowling party today, but Luke is having a hard morning so I'm not able to go. Today I just want a normal 5 year old boy who would be excited about bowling, running around, shouting out his excitement about going or just sitting down filling out Valentine's day cards, you get the picture. Lord help me to be thankful for each and every day I know that your ways are perfect and yet on days like today I struggle with the reason WHY?

Luke did a little better last night, though he was on oxygen all night again. There were a few times that he would dip way down on his oxygen numbers. I finally got to bed around 3:00 a.m. so this morning when I heard him alarming it was just too stinking hard to get back up. I'm thankful my sister Cindy came to help, I was able to get in a few extra minutes of sleep.

Sorry for complaining today, I know that it will get better it always does. The reason we keep writing this blog is to journal our days, the good, the bad and the ugly. I realize that many people keep coming back to see "how Luke is doing," I'm thankful for your faithfulness and especially for your prayers, I can't imagine life without them. I look forward to that day that I can look back on these hard days and thank the Lord for His faithfulness in giving us the strength to make it through another day.

Love in Christ,
Luke's Mommy Suzi

Tuesday, February 10, 2009

Two steps forward, three steps back, Luke continues to need your prayers

Luke has a fever again tonight. Last night as I mentioned in the post was a hard night, it continued to be that way pretty much all day. I didn't realize how sick he was and took him over to visit at Tia Yoli's house with Lily, I had planned to take the kids to Mt. Rainier to go sledding, but surprise we had snow today, the road up the mountain was closed. Since the kids couldn't go sledding I decided it would be fun to go to the cheap theater and see a few G rated movies, what could be more fun than seeing a double feature for only $2. Luke stayed on about 1/2 liter of oxygen all day, he slept most of the day, which is not normal for him. When I got Luke home I hooked him up and his numbers were not terrible, but they were not great either.

Tonight his oxcimeter has been alarming often, his heart rate is up again. I'm sure it's because of his fever, it got up to almost 103 degrees tonight. I gave him some Ibuprofen, but he threw up a little right after I gave it to him, so I'm not sure how much he actually kept down. His fever has come down a little bit, along with his heart rate. I am hoping that he will start to get better soon, so that I can get a little sleep tonight.

I've been reading the book "The Shack" it's actually taken me a few months to get through it. It's kind of a controversial book because of the way they portray God. I tell you what though it has ministered to my heart, I love the way it shows God as such a loving Father. It takes the verse that says It's not by works of righteousness that we have done, but it's according to His mercy that He saved us, not sure where that's found at this minute, but I know it's in the Bible, I memorized it when I was a child. It brings that verse to a whole new level, we can't earn God's love, we can't work for it, we just have to except it. Our Father God wants to wipe away all our tears and comfort us, He's not sitting up in Heaven pointing a finger at us accusing us of all our wrong doings, He is calling us to come and sit at His feet and just enjoy His embrace. I've known for years, it's not about religion, it's all about relationship! Anyway I think it's a good book and I would recommend y'all to get a copy of it and read it for yourselves, let me know what you think, I hope it will minister to you as it has to me.

Love in Christ,
Luke's Mommy Suzi

PS I would like to take a minute and brag about my wonderful husband. He had a awesome review today at work, but because of the recession did not receive a raise or bonus, this year. We are thankful he has a job, but have always looked forward to those bonus' they are what keep us ahead in all of Luke's medical bills, which add up to hundreds of dollars each month. I'm so glad we can count on God's math to supply our needs, He's never let us down yet.

Luke's another day closer to 100%, just praying it will happen soon

Luke continues to get better, though I don't think he is at 100% yet. He is still on a bit of oxygen each night. Tonight has been a challenge to say the least, it is 2:45 am and I think that I've finally got him settled for the night, for awhile he was alarming every few minutes. I find that sometimes all I need to do is rearrange him and his numbers will go back up, other times I need to turn up the oxygen for a little while to get him to where he needs to be.

I took Luke into see his Pediatrician last week and he decided that we should take Luke to his Pulmonologist so that we could get his opinion on just what Luke needs right now, whether that's taking out his tonsils or other suggestions. The Pulmonologist did say that Luke's tonsils were larger than the last time we were there and suggested that he does a sleep study to see exactly what is going on at night. Luke was not doing so well the day I took him in, his numbers were in the low 90's I thought he should be on some oxygen, but his Doc, didn't seem too concerned. I left there kind of frustrated thinking that if it was a "normal" child they would be trying to figure out what to do get the oxygen numbers up to where they should be, but since it's just Luke why worry. That's not what was said, that's just how I felt. I personally don't like to see Luke's number anywhere below 95, I'm more comfortable with them in the upper 90's of course.

I got a call from the place where Luke will be doing his sleep study, we've scheduled it for March 19th, which happens to be my sister's birthday. We will need to be there from 7:30 p.m. until about 7 a.m. He can have one person stay with him, so of course it will be me. I'm kind of curious to see what will be the outcome of his study.

In other news, we got our family picture done last Saturday. I'm pretty pleased with the way it turned out. I promise to show it to you all soon. Natalie is still on jury duty, she will hopefully finish up her case tomorrow. Amy was sick a few days last week, but is on the mend, I'm praying no one else catches it. I'm absolutely positively exhausted, I've gotten into a pattern of not being able to go to sleep at night, some nights it's Luke's fault, other nights it's mine. I guess all the stress of Luke being so sick has been almost too much at times, I know that I need to turn to Jesus and am doing my best, but I would still sure appreciate your prayers.

Love in Chirst,
Luke's Mommy Suzi

Monday, February 02, 2009

Luke has finally been weaned off his oxygen!

I'm praising God today, Luke is finally doing better. For the first time in 18 days Luke does not need extra oxygen to keep his numbers up. His heart rate is back to normal too. Last night he had a pretty good night, only had to get up twice with him because he was breathing too hard, which made his heart rate go up. I suctioned him and got him comfortable and he was fine for the rest of the night.

I'm looking forward to this week being much better than my last few weeks have been! It will be busy, but at least it will be normal busy. Natalie has been called to serve on Jury duty the next two weeks, I'm hoping that she will not be put on a long drawn out case, she will have to miss teaching her piano students until she is done with her duty. Amy is now working two afternoons a week, along with teaching my YMCA swimming class since I've been on "Luke duty" for the last few weeks, she also took over as the CE Director at our church, yep she's busy. Gordy is hoping to get a full week of work in, since he's missed quite a few days the last few weeks and is wanting to get caught up on his sleep. Isaiah and Ezekiel are getting into a good schedule with homeschooling again, after getting messed up a bit from the craziness of the past few weeks. Lily and the boys are out playing in the sunshine, what a huge blessing today, we've missed the sun here lately. Daniel is doing great, he has a new sweet girlfriend that we all love and his web design business has really been taking off lately. I thought you might enjoy hearing about the rest of the family, since lately all I've said has been devoted to Mr. Lukie man.

We would love to hear from all of you out there in blog land, what you all been up to anyway??

Love ya guys,
Luke's Mommy Sue

Sunday, February 01, 2009

Super Bowl Sunday...status update

Well it is Super Bowl Sunday and the big game will be on in just a few hours. I stayed home from church to watch Luke allowing Sue to get a break and be refreshed. I am glad she is able to go and break away from the situation, even if it is for just a couple hours. I thought I would give you an update on how Luke is doing.

Luke seems to have turned the corner. It isn't always easy to determine, just when you think you have it figured out, Luke will throw you a curve. However, He had a bit of a temperature yesterday that seems to be gone this morning. His heart rate is a lower and his oxygen levels are up and seem much better. Yesterday evening we were able to take him off the nasal cannula and use blow by only. This allowed us to give his nose a break as it gets very dry from the oxygen. With the blow by, his oxygen numbers have remained good.

These past few weeks have been a roller coaster ride, both physically and emotionally. I find that my emotions are strongly tied to how I am doing physically, in particular how much sleep I have been getting. When I get overtired and sleep deprived, I am more grumpy, and more easily discouraged by the situation. That is when I really need to press in to God and His strength to carry me through. I think the following verse in is appropriate for the situation

2 Corinthians 12:10"Therefore I take pleasure in infirmities, in reproaches, in necessities, in persecutions, in distresses for Christ's sake: for when I am weak, then am I strong."

In Christ, I am strong. Phillipians 4:13 says "I can do all things through Christ who strengthens me" I have quoted this verse many times these past few weeks and God has been faithful. I believe that much of that strength has come from the prayers of friends and family.

Thank you for praying, we can see the difference.

May Christ show Himself strong in you today.

Luke's Dad