Thursday, July 28, 2005

Finally a long overdue update on Luke!

I know many of you are wondering how Luke is doing. I’m sorry for not updating the blog earlier. I have tried on two accounts to update only to lose my entire update to the computer. Luke is doing okay, he has had some awesome days and he has had some very hard days. We’ve had some busy days with celebrating our 22nd wedding anniversary, Daniel’s 20th birthday, Amy went away to Kids camp as a counselor and had a awesome time, Isaiah went a VBS last week and just the busyness of all Luke’s appts makes my head spin at times. Thursday's are our fun days this summer, with lots of trips to various parks and lakes.

We took Luke to an eye specialist last week and we learned that Luke is tracking some and also that his vision is about 20/240, he sees about as far as a newborn. I was bummed because right after we got there he fell asleep and we couldn’t wake him up to continue with the examination, therefore it was not a through exam. One thing he did to try to wake him up was have me sit in a chair with him and twirl one way 3 times and then look at his eyes and then twirl the other way 3 times. His eyes on both accounts continued to go after I stopped which was what was supposed to happen. The Dr. feels that since Luke has favored looking to the right for so long we need to help him unlock the muscles in his eyes so that he will feel more comfortable looking the other way. We were sent home with some exercises to do with him and asked to come back in a month.

We were going to have a PH reflux test done on Luke this week, but when we began to take him off his Zantac medicine, he started coughing, sneezing and gagging just about non-stop within 12 hours. Gordy and I finally decided that we could not put Luke through this for 5 days just so that we could learn that he is having a reflux problem, which we already knew from what he was showing us off the medicine. It was a very hard day to say the least and it just happened to be on our 22nd anniversary, my mom called to wish me a Happy Anniversary and I told her it was anything but a happy day. My nurse had told me that if Luke didn’t start to get better we were going to end up back in the Hospital. Needless to say she prayed that God would touch him and we decided to give him his medicine and within a half hour he was doing almost 100% better.

Yesterday we experienced a very similar situation to last Friday making us wonder if we need to up his Zantac. We ended up giving him an extra dose after we got home from his PT and HBOT sessions. Once again he was doing better within a very short time. We are both feeling like he needs to have this Nissen Fundoplicaiton surgery done, though we aren’t looking forward to another surgery or hospital stay. I’ve had two different friends who have had their children have the surgery and both have said that it changed their children’s lives and was the best choice they could of made.

I continue to feel like I’m riding on the worst possible roller coaster ride. One day I will be so sure that Luke is going to be healed soon and I have the joy of the Lord as my strength and then the next day I will be in the depth’s of despair. I think that the closer we come to the anniversary date of the accident the harder it is for me to see Luke the way he has become. I think back to this time last year when Luke was running around laughing and playing and I desperately miss that precious little boy. On some days it literally hurts me just to think about those days and it honestly zaps all the energy out of me. I told Gordy that I just don’t think that I have the strength to help with painting the house next month. We’ve been planning to paint it for some time it really needs it badly. Anyway I wish we could just hire someone to come and paint it for us, but we just can’t justify spending the money when we could spend that money on Luke’s HBOT treatments, special appts, etc… I don’t tell you this to feel sorry for me, but just to let you know that I really feel like I’m gong to need some extra prayer this month, I don’t want to be depressed all month and as many of you know quite often the mom sets the tone for the house, therefore I want our home to be a happy place not a depressed place to live.

God is faithful to give me a special verse the other day it is O my people, trust in Him at all times. Pour out your heart to him, for God is our refuge. Psalms 62:8 God continues to remind me to trust in Him and he will give me a special place of refuge where I can lean on Him to be my strength, this sounds a whole lot easier to do then it is, but I know with His help I can continue to trust Him with the timing of Luke’s healing process. Please pray specifically for Luke to get rid of this congestion that he has been dealing with, also continue to pray that God will keep on touching his muscles to relax and his legs to bend. My one last prayer request is that God will bless us with showing us Luke’s smile again, I feel like it would be one of the happiest days of my life just to see that precious smile.

As I mention time and again your prayers keep us going! I pray today that God will bless you with an awesome day and today will be the day that you will see a miracle happen in your life.

Love in Christ,
Luke’s Mommy Sue

Wednesday, July 13, 2005

Great News about Luke and sad news about our trip across America

Luke is doing amazing things this week. I do believe after struggling with this infection in his lungs for so long, it is finally going away, praise the Lord. Luke has begun to be more vocal these past few days and much more expressive in the facial looks he is giving us. There is something different about his eyes, they are tracking so much better and when you look into them you can see that he is recognizing what he is seeing, instead of the blank look that has haunted him for so long. To say this is exciting is to put it mildly.

Today Luke took a friend with him on a dive in the HBOT. Josiah is 6 ½ years old and had a near drowning accident 4 years ago in June. He has made some great progress, especially after his HBOT sessions. Luke really seemed to enjoy having someone in the chamber with him. He kept lifting up his head to see what was going on. We began putting him on his stomach the last time we were there, because he relaxes so much more when he is on his stomach. It was awesome to see him lift his head up to look around, we’ve seen him lift his head up for a few seconds, but nothing like today where he would pick it up and keep it up for a bit of time and then put it down only to continue to do this off and on through out the entire dive time.

When Mary our nurse put him to bed tonight his heart rate was down in the low 100’s and even has dipped a little lower than that. We haven’t seen his numbers that low in a long time. He is also keeping his oxygen numbers up, which has been wonderful. Gordy came back to bed last night after hearing Luke's alarm go off, it seems he just couldn't get Lukes oxygen rate up above the 80's so he gave him some oxygen he came into bed saying that he didn’t know what was happening. I went into the room and checked his toe, where the sensor is located only to find it half on, I adjusted it and his numbers went back up to 96, we know that we should always check the sensor first, but in the middle of the night you get kind of groggy after numerous times of being woke up to alarms. I was so glad to see his oxygen rate that high during the deep sleep he was in.

Last night as I was sitting in the car waiting for Gordy to go into Lowe’s to buy some Bee killer, we have a nest of bees out in the back yard. I was a bit discouraged and very tired and the Lord ministered to my heart by saying I’m healing Luke from the inside out, you may not always be able to see what I’m doing, just don’t give up hope. I was so thankful for that word and then today when I saw Luke lift up his head over and again, I was reminded of God’s healing touch in Luke’s life.

Part of the reason I was so discouraged is because Gordy and I finally decided after much prayer and thought, not to take our trip across America that we have been looking forward to for years. We’ve decided with Luke’s fragile health situation we just wouldn’t be wise doing it at this time. To say that I was disappointed is to put it mildly. We are hoping that perhaps by next year Luke will be stable enough or perhaps by then healed completely so that we can go on with our plans. Please be praying that we will still be able to spend some awesome time with the kids this summer taking some shorter trips close to home.

God is answering your prayers about Luke’s trach whole closing up again, it seems like hardly anything is coming out of his whole, which is great news. Along with all the other things I’ve mentioned this week has been a huge turn around from the last week in the Hospital. He continues to struggle a bit taking his food into the G-port of his feeding tube, please continue to pray that he will be able to take his full bolus feedings through out the day without gagging and thowing up.

I need to sign off to get some much needed sleep, we are all getting healthy. The only ones with a bit of a cough left in the home are Lily and myself. I pray that you will have a blessed day today

Love in Christ,
Luke’s Mommy Sue

Sunday, July 10, 2005

God once again pours out His strength upon us as we put all our trust in Him

It’s hard to know where to begin in summarizing this past week in both Luke’s life, our family and mine. First of all I have to let you all know that I’m so thankful for your prayers once again. God is so faithful in hearing the prayers of all those that cry out to Him.

It was scary taking Luke back to the Hospital again knowing that we would probably be there for a few days. We knew that Luke was sick but just didn’t realize how bad off he was until Wednesday morning when I went to change his diaper his legs and arms were looking all blotchy, it scared me to put it mildly. We just were not able to get his high fever under control though his arms and legs were freezing cold. Basically all his oxygen was going to keep his vital organs going.

The Emergency Dr. took one look at Luke and said immediately he was not sure what is going on but I do know he will be staying here until he gets better. We then had the x-ray machine come in and x-ray him and they begin taking his blood for tests and also a sample of his secretions to see if he had an infection in his lungs. God began to work immediately at getting Luke better because the Dr. was amazed that his x-ray of the lungs looked as good as it did, though it did show fluid, letting us know that he had pneumonia. Then when we received his blood test back he was once again surprised to see that it was not as bad as he thought it would be.

The hardest part of that morning was trying to get an IV in him so that they could start hydrating him since he was dehydrated from being so sick and throwing up all the food and water we had been putting down him. Since his limbs were so cold it was hard to get an IV in him. One of the IV therapist said that she thought Luke needed to go to the PICU and not even think about putting him on the floor. I kept crying out to the Lord that I can do all things through you who strengthen me, but I beg of you not to allow Luke to go the PICU. I knew that going to the PICU would mean that I could not keep Lily in the room with me over night and I was not planning on leaving Luke alone.

Needless to say God was hearing my cries and when the Dr. from the floor and the head nurse came to see him they thought that he would be able to stay out on the floor. The nurse had meet us before and knew that I had a baby and would need to keep her with me so that I could feed her since she still nurses. The nurse even made the comment that he was looking better by the minute, God in His great mercy and grace opened the door for us to go to the floor and blessed us with one of the best rooms, a double room that they gave to us as a private room and even suggested we bring in a portable crib for Lily. I felt spoiled, as I looked out the window at a beautiful view of Old Tacoma and the waterfront. I could feel the favor of the Lord being poured out on during this difficult time.

As I was looking out the window with tears in my eyes at being back at the Hospital and knowing that they had just put another IV in Luke’s arm and that he would wake up finding a brace on it to keep it straight I was almost at the end of what I felt I could take. But just then I looked out the window and found a church with a cross on the top and I felt the Lord comforting me in the way that only God can. Whispering in my ear that He was there with me and that everything would be okay.

There is so much that I could share but I realize that this is already getting too long. But I will tell you another time that God comforted both Gordy and myself. The Dr. that took out Luke’s trach thought perhaps he was aspirating and wanted to do another swallow gram on Luke. Well as we sat there during the hour and half procedure watching the radioactive fluid that they had just given to Luke to swallow go down slowly we knew that he was aspirating some into his lungs. I sat there with tears running down my face and just as if God was sitting right by my side I once again heard Him say to me in that small still voice, I am the God that is healing Luke, JUST KEEP TRUSTING IN ME! Later as I was talking to Gordy he mentioned that he too was reminded by God, as he was sitting there feeling so discouraged, of the vision that he had when Luke had his trach taken out of him giving Luke to Jesus and Jesus breathing his breath into Luke and then Jesus putting him down to run back to his daddy’s arms. God is so faithful to lift us up when don’t have the strength to go on.

We heard many discouraging things this past week, the Dr. who took out Luke’s trach thinks that he made a mistake and even suggested that we should think about putting it back in. His gastronologist Dr. said that Luke may be refluxing his food and we should think about getting a Nissen Wrap put on his esophagus, which would be a major surgery. I left the Hospital feeling pretty discouraged, but at the same time knowing that God is able to do all things in His timing and looking at Luke these last few days his eyes seem to be brighter and he seems to be getting stronger by the minute. Only God knows what is healing in his brain and I do believe it is being healed slowly, surely and steadily, just as the scripture in Habakkuk 2:2-3 says.

Somehow Luke’s trach whole that was so small got reopened and his secretions are being sneezed and coughed out it, please be praying that this will close soon. Also please be praying that Luke will continue to be able to handle his feedings, he is on many new medications and I think some of them are making it difficult to keep his food down, when fed through his G-port, which goes directly into his stomach. Also be praying that Luke’s pneumonia will be gone forever and he will never have to go through this again. We need prayer for Daniel, Isaiah, Ezekiel, Lily, Gordy and myself that we will be touched by His healing touch we are all coughing and feeling a bit under the weather.

If you are still reading this book you truly are a faithful partner and I sure do appreciate you and all your prayers.

Love in Christ,
Luke’s Mommy Sue

Saturday, July 09, 2005

Guess who is home

If you guessed, Luke, Lily and Sue, you would be correct. They arrived home from the hospital this afternoon. Luke had a great night last night and the doctor decided to let him go home.

Again, I would like to thank each and every one of you that have been praying we truly appreciate it. Please continue to pray for Lukes complete recovery and that this pneumonia is behind him.

Keep looking up.

Friday, July 08, 2005

Luke may get to go home soon

We are hoping Luke will get to go home soon. The doctors say that as soon as Luke doesnt need as much oxygen and continues to take his food and continues to not have a fever, then we can take him home. Luke took all of his food today with no problems, this is a big praise. Luke has not had a fever today, this is another big praise. His heart rate has been fairly normal, thank You Lord. We just need for him to breath better and not need as much oxygen. Continue to pray for his breathing. We hope that he might get to go home tomorrow, we will let you know.

Over the last few days when I discussed Lukes heart rate, I referred to it as BPS, it should be BPM. Today as I was watching the Tour De France, they were monitoring the riders heart rate as BPM (Beats Per Minute). It got me thinking, where did I come up with BPS, certaintly not Beats Per Second. Then it dawned on me, being the techie that I am BPS stands for Bytes Per Second. Hmmmm....I know Luke is connected to a lot of things, but the internet is not one of them. Sorry for any confusion I may have caused you if you though Lukes heart rate was 200 Beats Per Second :)

Thank you for praying.

Keep looking up!

Thursday, July 07, 2005

Keep praying

Well, it has been another long day at the hospital. Luke seems to be taking the food fine, pray that he will continue to take it. His breathing has not improved significantly, they still have him on 1.5 litres of oxygen, he needs to get stronger and he needs to regain his strong cough. The doctors are concerned about the ongoing fight he has had with the respiratory infections. Please pray that this will be the absolutely last one and that the antibotics will do the trick. Also pray that his breathing will get stronger day by day, moment by moment. With God's grace, Luke may go home tomorrow.

God's blessing on you.

Update from the hospital

The doctor came by Luke's room a little while ago and said that if Luke tolerates his food today and his breathing improves that at best, he might get to go home tomorrow. Please pray that he would take his food without any issues. Regarding his breathing, he is currently on oxygen and they probably wont let him go home until he does not need it. Please pray that his breathing would improve and that they could turn off the oxygen.

Lily has developed a bit of a cough, so if you would keep her in your prayers, we would appreciate it.

Sue seems to be doing well, although I know she is tired from getting just a little bit of sleep. I am trying to get her to go home for just a while today and take a nap.

Thank you for your prayers.

Wednesday, July 06, 2005

The end of a long day

Sorry I have not blogged sooner. I am sure you are all waiting for news.

When we arrived, Luke had 103 fever his heart rate was around 200 and he was laboring to breath. His body was hot and his arms and legs were cold. His body was modeling (blotchy looking), this indicates that his circulation was poor. And he was dehydrated.

They started by giving him an IV, which was no easy task, it required multiple sticks to get on started and then because it was so small, they had to replace it later in the day. Once they had an IV, they began to pump the fluids in to rehydrate his body. Next, they gave him Ibuprofen to deal with the fever. Right around the time the fever broke, Julie was posting her prayer that God would drive out the fever and that he would send the right doctors. He answered her prayer on all counts. Once the fever broke, his heart rate began to slowly drop.

At this point, they took us upstairs to his room on the floor, which is a huge praise. It is a large two person room that only has Luke in it right now. Throughout the remainder of the afternoon, Luke's vitals improved. Finally around 3:00 he fell into a very deep sleep and he look 1000% better then when we brought him in. His temp was 100, his heart rate was down to 128 bps and he was breathing comfortably.

He was still sleeping when I left a little after 7:00. Sue and Lily along with our friend Yoli are going to spend the night in Luke's room.

Thank you for your prayers, we can tell and they are making a huge difference. Today, it was kind of like there was this miraculous turn around for no reason. However the reason is because God is answering prayer. I have a few specific prayers that I would like for you to pray about.

First, pray that his breathing will stabilize. I talked to Sue a while ago and she said that his oxygen level would drop all of a sudden from 97 or 98 to mid 80's.

Second, pray that the fever will stay away.

Finally, pray that the infection will be cured once and for all.

Words cannot begin to express my gratitude for you faithful friends and family. May God richly bless you as you pour out prayers for Luke.


At the Hospital

Well, here I am blogging from a familiar place, the family room of the hospital. This morning we brought Luke to the ER because he has a high fever (103) and is laboring to breath. The doctors have determined that Luke has developed pneumonia and they are in the process of admitting him to the hospital.

This past weekend we went to Eastern Washington to visit Sue's sister Lori over the 4th of July. On Monday night Luke began running a fever. We thought it was the flu as Daniel and Isaiah have both had the flu the last week. It is possible that Luke did catch the flu, however it has turned into pneumonia. We came home yesterday from Eastern Washington and Luke has continued to run a high fever with labored breathing, so here we are at the hospital.

With a high fever the heart will beat an extra 10 bps for each degree over normal, as a general rule of thumb. In Luke's case, that means an extra 50 bps to his normal 130-170 giving him a high heart rate that has exceeded 200 bps at times.

Please pray that they will be able to get the fever under control which will reduce his heart rate and that he wont labor to breath. Also, that the antibiotics will get rid of the infection once and for all. Sue or I will blog again later when we know more.

Thank you for your prayers.