Saturday, January 31, 2009

Back home

Around 9 pm last night the ENT finally came to examine Luke and decided that he had some kind of infection probably tonsilitis. She said that after he gets well then we can consider removing his tonsils by doing a sleep study. His tonsils may be causing obstructive sleep apnea.

Since we were providing most of the direct care for Luke in the hospital and we had all the necessary equipment to care for him, they decided it was okay to go home.

We arrived home around 11pm and Sue climbed into bed totally exhausted and I took the night shift with Luke. It was another rough night keeping Luke's oxygen and heart rate at reasonable levels. Luke is on an antibiotic and we are praying that we will see an improvement soon in his condition.

Thank you to everyone that is praying for Luke and our family, we appreciate your love and support.

Luke's Dad AKA Gordy

By the way, you can follow us on Facebook as Sue Searles and Gordon Searles

Friday, January 30, 2009

Luke is riding a Wild Oxygen Roller Coaster and we are not having fun!

Luke had another rough night last night. He kept dropping way to low on his oxygen. This is our first time to be at Children's in Seattle and so far I'm not sure how impressed I am. They are constantly apologizing for not doing what they say they are going to do. I guess we picked a very busy day to come to the Hospital. We started out sharing a room with a crying baby, but I told them that I couldn't take that all night. They then moved us to another room, I feel a bit sorry for the little boy and his mom next to us, they were totally quiet all night, while on the other hand Luke had a very busy night. Losts of nurses coming in to see why he wasn't breathing. I like the nurses and the Dr.'s they've all been great so far, just way too busy.

Our biggest prayer request right now is that they will figure out why Luke's oxygen levels keep dropping down so low and then jumping up real high. It's like a wild roller coaster ride, not a fun one that's for sure. I spent a lot time in prayer and singing last night. I think I got about 1 hour sleep, ya I'm ready for a nap that's for sure. We are waiting for the ENT to come and take a look then we will hopefully get a few of our questions answered.

As I was reading my Streams in the Desert devotional last night, this portion really stood out, I so desire to trust God and not be shaken when all the circumstances around are seemingly out of control. Those who trust in the Lord are like Mount Zion, which cannot be shaken but endures forever. Psalms 125:1 There is an old Scottish version of this psalm that strengthens our blood like iron:
Who clings to God in constant trust
As Zion's mount he stands full just,
And who moves not, nor yet does reel,
But stands forever strong as steel!

Thanks once again for your prayers they are so important to us,
Luke's Mommy Suzi

Thursday, January 29, 2009

Luke's headed to Children's Hospital up in Seattle

Last night was another rough night! I've still been singing praises to Jesus and thanking Him for what He is doing in our lives, but I'm tired. Luke is doing a little better right now, but not as good as he was yesterday.

I just got off the phone with Luke's Pediatrician and he is sending us up to Children's Hospital in Seattle. He just got off the phone talking with one of the ENT's up there and they are saying that perhaps a IV with steroids will help take down the swelling, then they can also run blood work to see if he is fighting any infections. There are no ENT specialists at Mary Bridge in Tacoma, bummer, this will be at least a 1 hour drive in good traffic. Please be praying that Luke responds good to the steroids and this will be answer we've been needing. Also be praying for the family as we will be separated during this Hospital stay.

Peace, peace wonderful peace, that's what I need!
Luke's Mommy Suzi

Wednesday, January 28, 2009

Praise and Thankfulness are Powerful Weapons!

Praise and thankfulness are powerful weapons, against the evil one! Today as I was once again crying out to God for a breakthrough in what to do for Luke, asking God for His amazing wisdom. I felt like the Lord told me to start praising and thanking Him. I know that Praise is a powerful weapon, it defeats the power of satan and evil in our lives. "Praise is actually the most vital tool to the beginning of miracles!" Satan can not stand to be in our presence when we are offering up our praise to God. I do feel like we've had some victory today. Luke is doing a bit better, last night was once again one of the hardest nights of my life, I literally had to stay by his bed and keep his mouth closed all night for him to be able to breath.

I got a call from Luke's Dr. today saying that the ENT that we thought we would take Luke to, doesn't feel like he want's to see Luke, he feels Luke needs a Pediatric ENT. We are waiting to get a referral to a specialist. I truly believe that God's timing is perfect and we will see this new Dr. on the day that God chooses. I therefore have to rest in God during this time of waiting.

I'm so thankful for all your prayers, my back is feeling all better and Luke is doing better. Please be praying tonight for a restful night, both for Luke of course and for Gordy and myself. Also will you be praying for my sister's grandson, he has been the Hospital for about a week with a respiratory problem, his name is Blake. My sister also found out that her son in law Chris, found out today that he has cancer in his throat. I'm praying today for miracles, will you join me??

Love in Christ,
Luke's Mommy Suzi

Tuesday, January 27, 2009

Day 13 and Luke is still sick

I'm getting close to my wits end, what oh what do we do for Luke?? He is still alarming all the time with either needing more oxygen or heart rate going too high. I called to make an appointment with an ENT yesterday, but the soonest they can see him is on the 12th of February. They did say they would call if they have a cancellation. I'm desperate for a miracle!

Along with all the stresses of Lukie man, my back went out as mentioned yesterday by Amy. All I could do yesterday is sit that was the only way I wouldn't be in pain. I am doing a tiny bit better today, but I'm still in pain anytime I stand or walk.

I hope you aren't getting tired of my constant request for your prayers, but as I mentioned above we are desperate for a break through. Would you please call out to God on Luke's behalf today?? We sure would appreciate it.

Love in Christ,
Luke's Mommy Suzi

Monday, January 26, 2009

Another Prayer Request

Hello to all of you out there,
We are really needing your prayers right now. My mom was walking up the stairs last night and her back went out. So she is in a ton of pain. Please be praying.

Also Luke is still not doing to good. Please just be praying for total healing.

We will update soon to let you all know what is going on.

Thank you so much for the prayers.

In Christ,
Amy (Luke's Sister)

Saturday, January 24, 2009

Luke get's a 4 Plus from his Pediatrician

I did take Luke into his Dr. on Friday afternoon, on the way there I was just not sure what would happen because Luke had been struggling to breath all day. The minute I got Luke into his chair to go in, his breathing became normal. I felt like an idiot when the nurse asked me why we were there. I told her his breathing had just became normal and that he had been struggling for days to breathe. The Lord touched him on the way there that's all I have to say. When the Dr. came in he was amazed at how well Luke sounded and looked. Though when he looked at his tonsils they were huge. I guess Dr.'s measure the size of tonsils starting from 0 - 4, Luke was at a 4 Plus, meaning his tonsils were so large they were touching each other. The Dr. did say he didn't see any infection back there, he prescribed some steroids to help take the swelling down. He said that perhaps he should get his tonsils out sometime in the future, I said let's see what happens in a few weeks. I'm not too anxious about the thought of putting Luke through another surgery.

Last night was much better, he didn't need any oxygen from the time we came home from the Dr. until this evening. He is currently on a little bit. He's not sounding so great, but it is not as bad as it had been.

Today I was able to take the kids to see the Tacoma Youth Symphony perform. Just about every night Luke and Lily go to sleep listening to classical music and lately their favorite has been Peter and the Wolf. I had noticed that today they were playing Peter and the Wolf and other fun "WOLF" songs, I was so hoping that Luke would be healthy enough to go and he was, what a huge blessing from God. All the kids enjoyed the concert, Luke really seemed to have fun, though he did fall asleep in the middle of Peter and the Wolf, I guess that's what happens when you put him to sleep by the same song each night.

Thank you once again for your prayers, they are amazing and so are you!
Luke's Mommy Suzi

Friday, January 23, 2009

Luke's going to the Dr. again, he needs a miracle touch from Jesus today

Luke is still not doing better, we are on our way to the Dr.'s office once again. I'm pretty sure his tonsils are swollen, which is causing his airway to be restricted. I'm praying that the Dr. will be able to get him on something that will help his tonsils to go down. Last night was another horrible night, full of alarms, and horrible breathing. I sat by his bed all night long and finally got a few hours of sleep at about 5:30 a.m.

Gordy left today to go on a Men's Retreat with our church, he didn't want to go but I told him it would be good for him to go. He drove a separate car so that if he needs to come early he will. But I'm hoping and praying that he will not have to come home until Sunday afternoon. Will you PLEASE pray for a miracle touch from God today for Luke and also be praying that Gordy will have a wonderful time, full of laughter, fun and refreshing from God.

Thank you for your prayers they do make a HUGE difference,
Luke's Mommy Suzi

Wednesday, January 21, 2009

Luke still needs those prayers coming his way!

Luke is still sounding absolutely horrible! I took him into the Dr. yesterday and had an x-ray done of his lungs. No pneumonia, that's good news. He sounds ok as long as we close his mouth and make him breathe through his nose. But we just can't stand by him 24/7 closing his mouth up. I looked down his throat today and it looks like it is large, but I'm not sure what normal looks like. We are tired and in much need of sleep, a day of no stress would be heavenly!

Love in Christ,
Luke's Mommy Suzi

Sunday, January 18, 2009

What a Night! What a Day! What A Week!

I'm almost reluctant to share my news with you all tonight, in fear that some of you may judge me unfairly. Tonight was very stressful, along with this past week I've almost been on the verge of tears constantly, some weeks I'm just plain old tired of all constant stresses that I go through. Don't get me wrong I realize I have so much to be thankful for and I am, it's just that I too am human like the rest of you all and the effects of sleepless nights and tough decisions add greatly to the stress in my life.

If you've been reading the blog lately, you already now that Luke is sick. Today we went back and forth on whether I should take him into Urgent Care. We finally decided this evening to go ahead and take him in, he'd been on oxygen most of the time for the past three days and he sounds terrible. When I got to Urgent Care I was surprised to see that there were only 2 people in front of us, they usually get Luke back to a room pretty quick since he is usually on oxygen, that is the ONLY benefit from going in there on oxygen, you don't have to sit in the waiting room long.

After sitting in the room for about 20 minutes a PA walks into the room, he asks what's going on and I tell him that Luke has been running a low grade fever for the past few days and that he has been on oxygen, which is normal for him when he gets sick, I also mentioned that I thought he had pink eye, which is something that he has never had before. He tells me before even looking at Luke they are not really equipped for taking care of Luke's needs, even though we've been taken care of there on numerous occasions and then he asks me if we are good friends with Mary Bridge Hospital. I tell him we do have friends over there, but that we are not close as we've only been there 2 times in the past 3 years. He tells me that he thinks it would be best if we walk over there with a nurse escort. I tell him that I am not sure that's necessary since we've taken care of his needs at home before when he is sick. The PA finally listens to his chest for about 1 minute which is the quickest listen Luke has ever had, he does say that he doesn't sound that bad, he doesn't even look in his ears or anything else. I tell him that I'm pretty sure that he has a sinus infection since Luke doesn't seem to be that sick. He looks at Luke's g-tube and comments that it looks good, I told him that he has never had an infection of which he sounds surprised because he informs me that most kids he see's come into the Urgent care have infected g-tube sites.

Okay long story short he finally asks me why we came in? I told him so that we could get Luke on an antibiotic, I also mention that I rarely ask for this as it has been 8 months since the last time he was on an antibiotic. I promise if he gets any worse I will take him to the Mary Bridge ER, he tells me he will write out the prescription, but I will have to sign a paper saying that I went against Dr.'s recommended orders and took Luke home, who would then be in danger of anoxia or death. Talk about trying to scare me to death! Though I did sign the paper and got out of there as quick as we could once we got his medicine. As I was leaving I was so stressed I felt like I could of thrown up wondering if I had made the right decision, but after talking to Gordy and bringing Luke home and hooking him up to his oximeter his numbers were doing pretty good, not great but definitely not in need of a Hospital stay. What do you think you would've done in my shoes? Most decisions Gordy and I have to make concerning Luke's care are difficult, I'm so thankful that we can pray and ask God to guide us to make the right choices.

We did end up getting a new mini van, that is new to us a 2007 Blue Dodge Grand Caravan, that was priced 1,000's of dollars under market price because the dealership wanted to get it off the lot. That story is at least another few paragraph's, just know we really believe that God handpicked this new vehicle for our family. Now we have Big blue and Little blue.

Along with asking for prayers for Luke to get all better, I have a few other requests to make of you sweet people: Sadie Belle is in desperate needs of your prayers right now, along with her parents, Jaynee Lockwood needs your prayers right now that she will deliver a healthy baby, for Parker to recover from his recent surgery, for Valerie Grace who has a new prayer link at the side, she is going through radiation right now for cancer, there are so many that need prayer right now. I'm thankful we serve a BIG GOD!

Love in Christ,
Luke's Mommy Suzi

Saturday, January 17, 2009

A Quick Update

Just a quick update to let you all know that Luke is doing a bit better. Last night was much better, though we still were up a few times to get Luke some medications to help him clear our his head so that his oxygen numbers would come up. We also had to change his oxygen tank and respond to a few alarms for his heart rate being to high, which means he was probably in pain or just from a very low grade fever, but who knows for sure.

Today after spending a much needed hour in the garage, so that we can have a walk way from the back to front again, we will be leaving to go Mini van shopping. Gordy has been doing some research via the internet and thinks that he's found a few promising deals to look at today. I'm hoping and praying that we will find one that will be dependable and won't cost fortune, as we don't have a fortune to spend.

Love you guys and so appreciate all your prayers,
Luke's Mommy Suzi

Friday, January 16, 2009

Luke needs your prayers once again!!

Would you all say a quick prayer for Luke? He began to get sick last night and has been on oxygen ever since. Both Gordy and I are exhausted as we did not get much sleep last night. Then to top off this "wonderful day" our mini van broke down on the way to take Isaiah to Speech Therapy this morning. I had to have it towed home, it looks like the transmission is shot, time to look for a new van, oh joy!

Thank you,
Luke's Mommy Suzi

Saturday, January 10, 2009

Here's Lukie getting excited about seeing his sister Amy get home from Denmark

I thought you would all enjoy seeing this wonderful picture of Luke. I think this is one of the best pictures we've seen, as you can see his eyes are both looking right at the camera. He was at the airport waiting for his sister Amy to get in from her 2 1/2 month trip to Denmark to visit her Uncle and Aunt. We are all so happy that Amy is home again we missed her so much.

Here's a little update from his last Dr. visit. It was decided to wean him off his Tizanadine, which is a muscle relaxant since it doesn't seem to be helping his tone issues, just puts him to sleep. The Dr. and I talked at length about what to do next for Luke, we set up an appointment on March 25th to try BOTOX. Gordy and I will be praying about this, hoping that you too will join us in praying to know what would be best for Luke, as it kind of scares me to use BOTOX on him. Good news, Luke is weighing in at 37 pounds once again gaining weight, which is great for Luke but not so great for my back and shoulder, which has been giving me some grief lately. The Dr. said that Luke's back looks great and as usual Luke is looking good, except for the fact that his knee's don't bend and his arms have a hard time straightening out. The Dr. along with Gordy and I are frustrated with the fact that we can't help Luke's muscle tone more, it makes Gordy and I realize all the more our only hope can be in God, He truly is our only answer to Luke's physical needs.

Love in Christ,
Luke's Mommy Suzi

Tuesday, January 06, 2009

We are counting our blessings, we have so much to be thankful for!

I've been thinking lately about all the things that we are so thankful for and began to sing that old Hymn "Count Your Blessings, Name Them One By One" Here are a few of our blessings:
  • We had a wonderful Christmas filled with family, friends, great food, good presents . . .
  • Our whole family has been healthy and Luke has been doing great lately
  • We got to have a white Christmas, almost too much snow which is unusual for us here in Washington state
  • Daniel along with Gordy's help tiled our tub/shower last week and it looks gorgeous
  • Gordy was able to take off two much needed weeks of vacation
  • Amy is coming home from Denmark in one more day, YAHOO!
  • I could go on and on but I'm pretty sure you get the idea of how thankful I am
As I have been counting my blessings, I've also had a heavy heart for those that have not had a good December. So many have lost precious loved ones, many have had trips to the Hospital, many have suffered sickness and pain. I have had so many of you in my prayers on a daily basis. Here are some urgent prayer requests for you wonderful people to pray for: Sadie Belle, suffering from an very bad infection, has been in the hospital for many days, you can read more at her site. Abbie who broke both of her femurs and is back in a cast. Jaynee Lockwood who is pregnant and is not doing so well, along with her family as they've had to come to America from Mexico where they live as missionaries. My good friend who has a alcoholic husband that desperately needs to be delivered from alcohol and needs Jesus. I could go on and on but these are the most urgent at this time.

Just to let you know Luke has an appointment tomorrow with his Rehab Dr. we will be discussing his muscle tone issues once again. As long as we are able to get Luke in the HBOT chamber on a regular basis his muscle tone does ok, but since we've not been able to get him there much lately he has become much harder to bend and stretch. I feel like a broken record, but would you please continue to pray for his knee's to bend again, I will not stop asking God for His miraculous touch until we see it happen. I look so forward to the day when God will completely heal Luke, I know it's coming, I don't know when, but I don't doubt it will happen.

Last but not least just wanted to let you know I began teaching swimming lessons again today. I taught at the YMCA for four years many years ago and since I wanted a preschool class for Lily during the Homeschool hour at the Y, I offered to teach the class. I had a wonderful time it was good to be back in the water teaching little ones water safety and how to swim. After the class I took Luke for a swim, he loves going in the water, though I think he might of swallowed some pool water, he has had to be on a little oxygen tonight for the first time in a long time. I'm praying that he will be better by tomorrow morning.

Happy New Year, I pray that this year will be filled with God's wonderful blessings, that we will all experience the touch of His Healing Hands in our lives!

Love in Christ,
Luke's Mommy Suzi