Saturday, November 26, 2011

A Much Needed Break

Gordy and I are taking off tonight for a much needed break. We are going on a cruise and will be gone a little over a week. We are desperately needing your prayers while we are gone, as the kids are not going with us. Amy, Natalie, my sister's Cindy, Jill and Lori are all going to watching the kids. To say going is hard is a understatement, but we know that we are in desperate need of a break.

PLEASE, really cover Luke in your prayers, that he will stay healthy and that he will have good nights. Both Amy and Natalie will be covering the nights and I know that they would appreciate your prayers.

Thank you,
Luke's Mommy Sue

Monday, November 21, 2011

Tis the season to be Thankful

Luke, Lily and I at a restaurant after church on Sunday afternoon,
I'm so thankful that Luke made it church, it was his first time in months.

There is an old gospel song that I often like to sing that says, How can I say thanks for the things you have done for me, things so undeserved yet you came and gave your life for me, the voices of a million angels could not express my gratitude, all that I am and every hope to be I give it all to thee, To God be the glory . . . I have the rest of the song printed at the bottom of this post. This song pretty much summarizes how I feel about all God has done for me. I've actually been wanting to write a post lately telling about all the things that I'm so thankful for and decided that since Thanksgiving is in a few days now would be a great time to take the time to do so.

Things I'm thankful for:
God - Without God I don't know where I would be today, for one thing I know it was God that brought Luke back to life, it's God that time and time again has brought him back to us when he's been so close to death. It's God's love, grace and mercy that helps me get through the toughest days and nights, it's His peace that assures me that I can continue to go on when things around me look so bleak, it's His strength that often helps me get out of bed each and every day, it's His joy that helps me to laugh on those days that all I want to is cry and it's his hope eternal that reassures me that He is in control of my life and I can trust Him no matter what happens in this life that I'm living.

Gordy - I can not even begin to imagine what my life would be like without my husband. He is my closest friend, I can tell him anything and know that he will not laugh at me or make me feel bad for telling him those things that I can not tell others. I'm thankful that he is wise and that he is a man full of integrity, that he provides for his family needs and wants and that he is a wonderful father to his children.

My children - I am blessed beyond belief to have such wonderful children! They are always there to lift me up when I'm down, they tell me numerous times a day that they love me, they are not perfect by any stretch of the imagination, but they are amazing and I can not imagine my life without them.

My parents - They gave me such a strong foundation, I'm so thankful that they introduced me to Jesus at such a young age, they taught me to trust God at all times, they showed me by example how to have faith that can move mountains and they have always cheered me on and covered my back in prayer during those times of great need.

My siblings - As most of you know I have one brother, 3 sisters, 4 sisters-in-law and 6 brothers-in-law. I'm so blessed to have such wonderful siblings, my sister Cindy has helped me with Luke for so many years now, faithfully coming over a few times a week to get him up and bathed so after some of the nightmare nights I can get a few hours of extra sleep.

My friends - I'm blessed to have many friends, I can not even begin to mention them all here in fear that I would forget to mention one of them.

Faithful Prayer partners - I'm so thankful for each and every person that has faithfully prayed for Luke and our family, I know without a shadow of doubt that you are what has made our journey livable these past 7 1/2 years. Your prayers have kept Luke alive and healthy, thank you so much for your faithfulness.

There are so many other things I'm thankful for, there is no way that I can begin to mention them all here on this post, it would go on and on and on and on and on and on . . . . .

Here's Luke and I waiting for him to be hooked up to all the wires for his sleep study

Here's Luke hooked up to all the wires,
I'm not sure I could of slept with those probes all over my face.

I am also so very thankful for Luke's new Pulmonologist. We recently went to a new Pulmonologist because Luke's regular one was out of town on the day we made our appointment and there just happened to be a new one in the area. He called me with the results from Luke's sleep study and even though they were not that great, they weren't as terrible as he thought they would be, he mentioned once again that he doesn't think that Luke needs a trach at this time, Hallelujah!! We are going to continue on with the new neubulizer treatments he prescribed and see how he does on those before making any decisions about our next step in helping Luke. I will say that I really think these new meds are helping Luke, we are seeing some positive changes in him lately, he is not needing any where near to the amount of extra oxygen that that he's been needing lately. His nights are getting better, though still not great, definitely better. We go back to him on December 13th so we will see that day what he will say, I'm praying that it will be good, trying to believe what I can not always see, that's faith talking!

Last but not least Luke is coming back to us, as I mentioned in a previous post we have been slowly weaning Luke off his baclafen, which is his muscle relaxant and guess what?? His seizures are getting better and he's more alert and awake through out the day. I didn't realize how much that drug was affecting him until we really began the weaning process. Now I'm hoping that he will continue to get looser and not more tight because we will have to try something for his tone if he doesn't get better.

Love in Christ,
Luke's Mommy Sue

PS I can't wait until my next blog post to share with you some exciting news about what Gordy and are going to be doing next week, want to take a guess???

How can I say thanks
for the things you have done for me
Things so undeserved
Yet you give to prove your love for me
The voices of a million angels
Cannot express my gratitude
All that I am or ever hope to be
I owe it all to Thee

To God be the glory
To God be the glory
To God be the glory
For the things He has done
With His blood, He has saved me
By His power, He has raised me.
To God be the glory
For the things he has done

Just let me live my life
And let it be pleasing, Lord to Thee
And should I gain any praise,
Let it go to Calvary.

With His blood, He has saved me
By His power, He has raised me.
To God be the glory
For the things he has done.

Sunday, November 13, 2011

*No Peace = No Jesus* *Know Jesus = Know Peace*

No Jesus = No Peace,
Know Jesus = Know Peace,
pretty much sums up my life lately.

I have been dealing with a lot of anxious thoughts, thoughts of fear and despair, thoughts that definitely do not come from God. I have learned over the years that when I willingly give all my negative thoughts and fears to Jesus, He ALWAYS takes them away if I let him. I know, that I know that I know that I can trust God to help me get through the deepest trials, the longest nights, the hardest days, the times that I can't go on another minute, Jesus is ALWAYS there to pick me up and help me through whatever impossible circumstance that I have to get through that day, the KEY is that I have to ask Him for His help and then I have to TRUST that He will take care of it for me. For me the TRUST KEY, is often the hardest for me to use, sometimes I foolishly think that I can get through some of the deepest trials on my own and that's when I get into the deepest pit of despair.

I often tell other Christians that the easiest way for me to get out of the depth's of despair is to put on some praise music and to start singing praises to Jesus. It never fails to amaze me how God lifts me up, but once again it only happens when I allow Him too. Walking and singing praises to Jesus is what makes my life bearable on those days that seem unbearable. And the added benefit from all the walking I've done this year is that I feel better and I've lost 35 pounds as a added benefit.

Luke and I out on one of our many walks this year

The reason I'm writing this post today is for me to remember all the things that I just wrote above, you see tonight I take Luke in for a sleep study at the Hospital. First of all if you know me at all you know that I DON'T like hospitals ever. Second of all the last sleep study we did was a nightmare for me because I couldn't see Luke's numbers all night long they have a seperate room to monitor them in so I wasn't sure how he was doing through out the night. The third reason is I'm trying so hard not to be fearful for what they will find out during the study, for you see I've been living the nightmare of horrible nights for months now and I know it's not going to be good. The fourth reason is because for me it will be another night of no sleep and I'm already living on little to no sleep and it's just not good for me physically or emotionally to be so sleep deprived. The last reason is because I don't like going to the hospital, opps I know I already mentioned that one but it is true!

I would really appreciate your prayers today and through out the night tonight that God would help me to TRUST Him today about this study tonight and also that Luke would sleep ok and they would figure out something that could help him so that our nights will become easier.

I had to take a picture of my devotional page the other day, I was once again amazed at how God brings reminders into my life on a daily basis that He loves me so much and He is willing to comfort me if I let him. I in turn then can pass on that comfort to others in need, for I truly believe the only way to really get out of your pit of self pity is by giving a hand to someone else to get out of their pit of troubles. Taking my eyes off myself is the biggest key I have found to getting better.

Love in Christ,
Luke's Mommy Sue

Friday, November 11, 2011

The Facts of Life with Luke

Here's Luke and I on a walk through Wrights Park, downtown
Tacoma after his Neurologist appointment today

Fact #1 - Luke is a 8 year old boy, who was born healthy and stayed that way until he was found dead in our back yard pool. We believe that God brought him back to life. Because of his near drowning accident he suffered an anoxic brain injury that has left him unable to walk, talk or do anything for himself.

Fact #2 - Luke now weighs 48 pounds and is getting very tall, his knees have not bent for at least 7 years making it extremely challenging to pick up and move around.

Fact #3 - Luke has gorgeous brown eyes and very long eye lashes, he is unable to talk, but does communicate with his eyes, he will blink to let you know what he wants. He also let's you know if he is in pain by the fact that his eyes get red and he will start to cry.

Fact #4 - Luke now has severe lung damage because of the water he swallowed, along with the fact that he has aspiration problems. He now suffers from Bronchialecsis and atlectasis which causes him to have pneumonia's often, along with a need for supplemental oxygen at times.

Fact #5 - Luke is unable to eat through his mouth, therefore has a g-tube in his stomach that allows us to feed him through a feeding tube. He was also recently diagnosed with gallstones, which will mean he will have to get his gallbladder out sometime soon.

Fact #6 - Luke is the sixth child in a family of seven children, he has 3 brothers and 3 sister's, his oldest brother Daniel married Sarah a little over a year ago, they now live in Centralia, WA, his sister Natalie married Josh two plus years ago, they live within walking distance. He shares a room with his younger sister Lily, his sister Amy quite often helps take care of him and his sister Natalie comes over two morning a week to help get him up and ready for the day.

Fact #7 - Luke has had way too many appointments lately, yesterday he was casted to have new wrist orthodics done, along with a preliminary appointment to talk about casting his ankles to help retrain his feet not to go up into his legs. He has been slowly weaned off baclafen, which is a medication to help relax muscles, but has found that the more we wean the looser he gets, it's also helped get rid of most of his seizures he has been dealing with lately.

Fact #8 - Luke at one time had nurses to help take care of him, but he lost those nurses when he got rid of his trach. He now has his family to take care of him along with his Auntie Cindy and even though we qualify for our state waiver program we don't recieve that benefit because our state is broke.

Fact #9 - Luke has only been admitted into the Hospital 3 times in the past 3 years, once for a EEG, once to get his tonsils out and the last time for a very horrible pneumonia he had last February.

Fact #10 - Luke and easy don't ever go in the same sentence, though Luke and love sure do. The challenges our family experience because of Luke's needs has been overwhelming at times, especially lately. Night's have been nightmares, especially for Luke's mom who has been up all night with Luke a lot lately.

Fact #11 - It is only because of our faith in God that we continue to believe that Luke can be completely healed, not because we deny that Luke is the way he is, but we affirm that we serve a miracle working Father. We know that God makes brains and lungs each and everyday when he forms babies in the womb, therefore it's not hard for God to restore Luke's brain and legs back to perfection, that's what we know to be true and we will with faith believe that God will do that for Luke.

Fact #12 - Luke has been blessed with many people who deligently and faithfully lift him, along with our family up in their prayers. We don't know where we would be today without those prayers, thank you for your faithfulness!

Zeke turned 11 last week, we celebrated his birthday on Sunday afternoon

Monday, November 07, 2011

Urgent Prayers Needed Today For Lonnie

My sister Lori's husband Lonnie is going in for open heart surgery today at 11am. Please be praying for him to be safe during the surgery, for the surgeons and antesiologist to do a good job and for peace for my sister and his family.

I along with my dad and sister Cindy drove 4 1/2 hours last night to be here in Spokane for the surgery today. We were able to pray with Lonnie last night, it was so good to him smiling and at peace with the surgery today.

Thank you,

PS Luke is doing a little better, Gordy said he had a pretty good night. Please pray for him to have a good day with Natalie and Amy watching him today:-)

Friday, November 04, 2011

24 Very Long Challenging Hours

Sometimes you wonder how much you can handle in a 24 hour day and though this is definitely not the most challenging day I've had in my life it's perhaps in the top 10.

12 am - I'm still up because even though Luke is doing a bit better tonight I'm having a hard time shutting down my mind, after being up so late each night for so long my clock is turned around a bit. I decide to finish up my last blog post, start another load of laundry and then since Luke is doing so good try to get to bed.

1 am - I give Luke his nightly medications, clean up the kitchen a bit, put one more load of laundry in the washer and by the time I'm done with all of that it's close to 2.

2 am - Climb into bed and thankfully conk out pretty much immediately.

8 am - Get woke up by Lily climbing into bed with me, thankful for the full 6 hours of sleep. I can't remember the last time I've actually had 6 hours of uninterrupted sleep. Shoo Lily out of my bed to get dressed and eat breakfast so that we can get some school done.

9 am - Finally climb out of bed, check my e-mail to see if I have any results listed from Luke's blood work or x-ray from the previous day. Shoot off an e-mail to Luke's pediatrician asking if he's heard anything. Get the kids going on their school work and Zeke to practicing his piano lessons.

10 am - I get the e-mail from the Dr. saying that the x-ray does not show pneumonia, but does show a severe scoliosis in the spine, along with the details about the atelectasis and bronchilectas Luke has in his lungs. The blood work comes back a little better from the last month, but shows Luke's CO2 numbers high, along with some definite inflammation. I then work on a couple medical bills that I've been needing to take care of, thinking to myself that I definitely don't need that stress today.

11 am - I finally stop for a few minutes to eat a English muffin, clean up the kitchen, help the kids with some more school work, get Luke's stuff ready to go to his appointment. Amy gets home from a Dr.'s appointment, she has a bad sinus infection brewing, so I'm thankful that she went in for some antibiotics.

12 pm - I jump into the shower, kicking myself for waiting so long because now I'm stressed that I might not make it in time for Luke's appointment. I'm literally running out the door, well not really running as I am carrying Luke and it's challenging just to carry him these days since he weighs about 50 pounds. As I'm getting on the Highway I have a car pull up beside me to tell me that I my back tire is going flat. I pull off the next exit and take a picture to text Gordy asking if he thinks I can make it to my appointment, because even though it's definitely low, it's not flat. I decide to go ahead and try to make it to the appointment because I don't want to have to reschedule it.

1 pm - I pull into the parking lot thanking the Lord for a parking place, I jump out of the car get Luke's wheel chair out, put Luke in, put his back pack in the bottom of it, grab his suction machine, his oxygen tank and my purse and I literally run to make it in time for his appointment. We make it there 5 minutes late. After giving the nurse all Luke's medical information we finally see the Dr. about 30 minutes later.

2 pm - We finally meet this new Pulmonologist. I don't know that anything he had to say was good news, in fact it was quite depressing. I had brought the x-ray from yesterday to show him and then he proceeded to tell me about all the horrible things going wrong in Luke's lungs. He showed me the Atelectasis, which is his collapsed lung on his lower right side and showed me the middle of his lung where there is scarring from constant aspiration, then he showed me where Luke has too much air in part of his left lung, which is causing stress on his heart, then he showed me the curve in his spine which is also causing air flow issues. He then went on to tell me that he could tell by looking at Luke's finger tips that his bronchialectasis was not doing good.

2:20 pm - To be honest I learned more today than I have ever learned from an appointment like that before. I sat there just wanting to cry. He then went on to say that he's not sure a trach is Luke's best option right now, which was a happy thought for me. Because a trach could weaken his cough, of which he has a good cough now. A trach could also cause more secretions, which would be a bad thing. He decides that we need to do another sleep study, to see how bad his sleep apnea is at night. He also put Luke on two new nebulizer treatments, one is to help dry up his secretions and one is a steroid. He also put Luke on Cipro again to see if we could get rid of the infection that is constantly brewing in his lower lobes. Whew!

3:00 pm - I walk over to the Mary Bridge Speciality Clinic to sign a waiver to allow the therapy unit to appeal a wrong diagnosis code they used when Luke went to see a OT there. You see they put down cerebral palsy instead of anoxic brain injury, due to a drowning accident. Of which our insurance will not cover Cerebral palsy, but will cover anoxic brain injury. They wanted me to appeal this wrong coding even though I didn't do it, long story longer the sweet receptionist told me that she would take care of it but needed my signature to allow her to proceed. That done Luke and I now walked over to another building to get his prescriptions filled and to take in Luke's sputum collection to the lab. When they told me it would be about 20 minutes to fill the prescription I told them I would go grab a bite to eat and be back to pick it up.

3:40 pm - I walk down the hill to Subway, by now I'm so hungry because all I've had time to eat today has been a English muffin. I eat my lunch and head back up the hill to Group Health thinking I had given them plenty of time to fill my prescription, but no when I get there I find out they are still working on it. By now all I want to do is cry. I wait about another 15 minutes, freaking out because we are having to be by all the sick people in the waiting room, they finally call us up there and we find out the reason it's taken so long is because they are on hold waiting to be sure the Dr. has prescribed the correct amount of antibiotic because to them it seems to be extreme. I tell them that Luke just recently had this prescription, they check on it and sure enough they realize it's okay.

4:00 pm - I walk back to the van and just sit there and hold Luke for a few minutes, shedding a few tears thinking to myself without a touch from Jesus I just don't know how much longer Luke is going to live, my other thoughts are how do you let go of your precious child. Then I remember about my tire and wonder if I have the energy to take care of it. Just about that time Gordy calls me to say he is done taking the boys bowling and he will come help me with the tire, whew, what a huge load that lifted off my back. We then trade vans and he takes the boys home.

5:00 pm I run into Costco for a few items, fill up the van with gas. On the way home I get a call from my sister telling me that her husband has to have open heart surgery on Monday, my heart is broken by the pain I hear in her voice.

6:00 pm - I get home just in time to kiss Gordy good-bye, he is going to a football game. I then get Luke fed and all the ingredients ready for the boys to make individual pizza's. You see Zeke's birthday was last Wednesday and I told him he could have some friends over to spend the night, so he along with Isaiah, has Ben, Josiah and Nate over for a friend birthday party.

7:00 pm - I get a call from a good friend telling me that she found out today that she has a lump on her thyroid and the Dr. thinks it might be cancer, along with some other bad news she has just learned today, I pray with her believing that God will heal her and help her get through this day of days. I clean up the kitchen, then make some homemade no bake cookies for the boys, I then get Luke ready for bed and hold him for a bit doing some chest percussions on him.

8:00 pm - Zeke opens up some presents, then the boys have cookies and ice cream.

9:00 pm - I get Luke into bed late tonight, he starts out the night with great numbers on his oximeter, I then sit down to the computer to get caught up on face book and watch a movie on Netflix.

10:00 pm - Gordy gets home from football game.

11:00 pm I respond to Luke's alarm he's is having one of his sleep apnea episodes, not breathing at all, I'm trying so hard not to panic but it's hard when his numbers are dropping down into the 60's before finally rebounding up again.

11:45 pm - I tell the boys it's time to get ready for bed.

12:00 am - I tell the boys once again to get their teeth brushed, jamies on and climb into bed. Then I sit down at the computer and decide to write about these last 24 hours. I realize this post is way to long, but I guess I don't care once again this is my journal of our journey and this is one day I hope to forget about one day,therefore I need to write it all out so that I can look back on it with thanksgiving that God gave me the strength to make it through without completely losing it.

The End
Here's a picture of the boys at Zeke's Birthday Party

Thursday, November 03, 2011

Seems like lately it's one trial, after another trial, after another trial . . . . .

I so wanted to keep up my last post a little bit longer, I love looking at all the pictures of the wonderful memory filled retreat weekend. But alas I need to update on how Luke is doing, since this blog is all about Luke after all.

Luke & I at one of his many Dr. appointments
It seems like since the end of July Luke has been having one trial after another, after another, after another. If it's not pneumonia, it's blood coming out of his g-tube, if it's not one Dr. appointment, it's another Dr. appointment, if it's not one blood draw it's another blood draw, after blood draw, after blood draw, if it's not one x-ray, ultrasound, x-ray, it's another x-ray, if it's not one procedure, it's another cat scan, if it's not one seizure, it's another seizure, if it's not gallstones, it's trying decided whether doing surgery to take them out is the right thing for Luke, if it's not trying this medication, it's trying another one unsuccessfully, I think you get the picture.

Gordy and I sat down on Saturday and had a real heart to heart talk about what we are going to do about Luke. I just don't know how much longer I can go without getting any sleep at night, it's not only hard on my body, my mind, my spirit, it's also hard on my other children as I can not be there for them as I should be. We both came to the conclusion that if Luke getting a trach is our answer to getting him the help that he desperately needs then we have to be willing to talk to the Dr. about this happening. Though it did take me a few more nights of no sleep before I finally put the call through to the Pulmonologist today. To find the courage and strength to make that phone call today is nothing short of a miracle for me.

I know many of you are saying what's the big deal about Luke getting a trach??? Lot's of kids have trach's, Luke had a trach, trach's help kids live better lives. A trach will most likely get you nursing help again, a trach will help get that gunk out of his lungs, a trach may help Luke take deeper breaths causing him to finally open up the lower part of his lungs that have been collasped for many years now. While all those things are most likely true, the part about getting a trach that I don't like at all is it complicates our lives, no longer will I be able to get just anyone that is willing to learn how to watch Luke, I will now have to be sure they are certified to do trach care.

While nurses are a huge blessing, they can also be a huge trial, we were blessed in the fact that after many months we found some great nurses, but finding those nurses caused many days and nights full of frustration and tears. Just imagine for a moment having someone come over to your house everyday, on all those days whether you feel like having someone over or not they are coming, you fell like you need to keep your house a bit cleaner, you fell like you can not always be the "real"you, you may live in fear that if you discipline your child in a way that the nurse doesn't agree with they could call CPS to do an investigation on your family, that has happened more than once to many of my friends. It's weird to go to bed knowing that you have someone sitting in your home awake, taking care of your precious child, thinking I should be the one to be there if they need something. I think you get the picture.

As mentioned above I did call to make an appointment for Luke to go into his Pulmonologist today only to find out that he is at a Cystic Fibrosis conference, he won't be back until Monday. We are therefore trying out a new Pulmonologist tomorrow. Will you be praying with me that he will help us think of some other options that we haven't tried yet before giving us the option of a trach?? I keep thinking we haven't tried everything yet and perhaps that one new medication or treatment will be just the thing that will help Luke out.

I am thankful, so very thankful for all your prayers, I know I say it over and over again, but it's true, they really are what keep us going. It is only because of God's supernatural strength that I'm able to rise out of bed everyday with enough energy to not only get through all the stuff I need to get done, but also with enough energy to walk at least 2-4 miles a day. The walk keeps me sane:-) May God richly bless you for your faithfulness.

Love in Christ,
Luke's Mommy Sue