Phooey with Baby Steps, Honey, Let's Fly!

I appreciate all of your patience with me, I now have a computer, but I am having a hard time getting the thing set up for internet.  Go figure, right?  That is why we paid extra for one on one support.  I need someone to hold my hand and listen to me gripe when it works for them but not for me!  But I know that you don’t really want to read about my technical troubles, that would be a different kind of blog, wouldn’t it? Also, note that I have posted two blogs today.  I really need your help making some decisions, and I need as much feedback from you as I can possibly get, so comment either here, or my facebook page, or my email.  

As I alluded earlier, we are throwing out the baby step terms for a while.  Our girl is ready to fly.  I will update you chronologically, so bear with me.

Friday they tried to downsize her trache, but they are going to have to anesthetize her before they can remove it, so we are still waiting for that to happen.  

Still no word from the insurance people, so we are still waiting for that to happen.

Oh and one more thing, they are calling in a hand specialist to look at her fingers to see what the best course of action is for her fingers.  I think she is ready for something to happen there.  It will be good to know for certain exactly what the long term plan is.  However, they have not come in as of yet, so we are still waiting for that to happen.

But, there are some mighty righteous people praying for Tammy, because once again, your prayers are “availing much.”

Even though they haven’t downsized the trache tube, they have put her on the nose candela. (Nurse friends, is that the right spelling? I am typing this, saving it to a jump drive and having someone else post it.  I don’t have a dictionary. If it is wrong, please, let me know.)  It is the clear tubing that she had before that most people associate with getting oxygen in the hospital.  She is doing much better with it than she was with the trache collar.  It had a huge blue tube attached and it hung around her neck, so it was a bother and pretty confining, so she feels “free-er” than before. Speaking of feeling free . . .

I think the last time I wrote, she was having one good day and then would be pretty tired for several more.  She was having a hard time even sitting up on the side of the bed, and the farthest she had been able to walk was about 15 feet.  Saturday she took a stroll right out the door all the way to the nurses station, rested for a few minutes and then walked back to her bed.  She walked 52 feet!  Now, she was dog tired, and took a nap that afternoon.  She also took it easy on Sunday.  But today, just to make sure we wouldn’t think it was a fluke, the girl walked 100 feet!  Yes!  Double from just two days earlier!  Then, when she was “tired,” she sat in the wheelchair and scooted herself around the “loop” (the hallway that goes around the nurses station and the service elevators.)  She said her calves were burning when she was done, but it sure felt good!

And, her oxygen levels stayed in the 90’s!  That is a flying leap, dear friends!

Another thing I would like to ask you to pray about, Tammy’s blood sugar levels have been dropping in the middle of the night to an unhealthy level.  This is mostly because of the meds she has been on, so it isn’t a long term problem. At least, at this point, we don’t have any reason to think it is a long term problem.  However, since they are having to check her insulin levels regularly, they have noticed the fluctuation.  She has been able to eliminate the need for the insulin or glucose shots (yes, both, depending on the day) she had been getting to keep her sugar levels happy shots most of the time, it is just the nights that are causing problem. Pray with me that she will stabilize, despite the meds and not have to be “poked” any more than absolutely necessary.

Have you ever had one of those weeks...

Of course we all have, haven't we? Those weeks when there were amazing triumphs mixed with crazy schedules and stress, only to be followed by extreme exhaustion. Yeah. That is just about right where I am sitting.

Danny's schedule is busy because of stuff at work. My kids have something going on every night this week, except Friday, but including Saturday and Sunday, only to start again on Monday through the next Thursday. I say all of this so that you will understand why I have been and will be so sporadic on updating the blog. And, the timing is crazy, since we are hoping to find out what day Tammy will be listed. We are hoping (at long last) to finally be able to buy our new computer (a lap top) this weekend, God willing and barring any financial something-or-other that might come up! So, soon, I will be able to blog again on a more consistent basis.

Actually, it is a bit odd to say, but truthfully, I am considering this my "calm before the storm" season. I am enjoying being able to run my kiddos around, and I love being able to leave Tammy at the hospital knowing that she can ask for help when she needs it. I love knowing that she is getting better every day. I rejoice knowing that we are reaping God's blessings because of the many voices who have called out to heaven on Tammy's behalf. Right now, if I need to do something, leave early, whatever, I know that Tammy is not scared, not worried, even if she is somewhat inconvenienced (the nurse to patient ratio of ICU spoiled us a bit!) But, all is relatively calm. Busy is good, actually marvelous, compared to the chaos of our beginnings together on this blog.

I would like to ask you to begin to pray for Tammy's recovery after her transplant, as well as her health in the meantime. I believe she will get her transplant and that it will be at exactly the time God intends. I also know that He has a plan for her recovery. I ask that you will ask Him to give all of us the patience and the knowledge to get her through, not only transplant care, but through rehab as well. She is working really, really hard to push her limits physically - within reason of course - but there is only so much she can do with her lungs as lousy as they are. Ha! I have to share something with you, as I was typing the last sentence, I noticed that I typed "the lungs" the first time before I went back and corrected it! I think I am beginning to consider them as foreign matter, just like her body seems to be telling us. Too funny. However, I firmly believe, and the Physical Therapist (PT) has said as much as well, that her strength far exceeds her lungs ability to oxygenate her muscles. That is encouraging to us now, but pray that when she can breathe with her new lungs, that frustration will not set in when her body can't keep up.

Speaking of breathing, aren't we always talking about breathing? One more bit of good news, sometime today they were supposed to have begun to decrease her trache to begin to let it close up. Crazy, right? One thing I have learned, you never really know what a doctor plans beyond the next 8 hours, if they even let you in on that! We guess they decided to remove it so that if it takes a while for the transplant, she will be able to move down the street to a rehab facility. The trache complicates the move, so, if she can go without it, it is better for her to do so. So, again I find myself saying, "Never mind what I said before, here's the revised plan." I am so thankful for your patience with me in so many areas. Tardy. Lazy exhausted. Wrong. Could the adjectives ever cease?

I also don't think I have written about her right hand and arm in awhile. She blows my mind. She is able to raise her arm out to the side at almost a 90 degree angle. Slowly but surely the elbow is also loosening up. Tammy is making sure that she uses that arm as much as it allows so that she can regain it's flexibility. I do believe there are some plans to "whoop-up" on some of us on the racquetball courts! I am sure she gets discouraged that her right arm is slower in recovery, but it has been through some rough stuff. It no longer hurts to the touch, and other than one day right after PT started, she hasn't had any muscle pain from the therapy. To God's glory and honor, of course. She is also ready for them to do something about her fingers, but they want to hold off to prevent opportunity of infection prior to the transplant. Remember, any infection pulls her off the list, and if any permanent damage is done by the infection, she would never be able to get a transplant. But I don't blame her for wishing they'd remove the damaged tissue. I really can only imagine how surreal it must be for her.

So here are some specifics that I would like to ask you to pray for while you wait for me to be able to chase down a computer to blog again.
1. Pray that she will be able to hold things firmly in her right hand. She can close the fingers, but there isn't much strength.
2. Pray that she will be able to touch her nose with the thumb of her right hand. This is just a measure that we want to shoot for.
3. Pray she can increase the amount of time she sits straight up in the chair. Reclined she can be there most of the day, but sitting straight up with no back support is tiring.
4. She has some bicycle pedals to work with on her legs. Pray she can build up her time every day. Right now 30 seconds is a beat down, so let's pray that she will be able to go 2 minutes pretty soon.
5. Pray for quick insurance approval for the transplant.
6. Pray for a short time on the list, because the sooner it comes, the less time for other trouble to set in and the quicker she will be able to get up and moving again.
7. Pray that if the wait is long that we will remain strong in our confidence of the "goodness of the Lord in the land of the living," so that we will wait with grace and patience that brings honor to our Creator and Healer.
8. We have cancelled her lease at her apartment, at her request. So, we will be closing up and packing up one home, while at the same time, readying our home for her to come live with us. So we have stuff that needs to be organized, unfinished jobs that need to be done, not to mention once all of that is done, the major clean-fest that has to happen to get our home as safe for her as possible. We need stamina, provisions, and patience so that we (Danny and I) won't kill each other or our teenagers in the process!

Yep, I know the list is longer than usual. I try to only focus on a few things at a time. I just figured since I had been so horrid in writing consistently, I would make sure you have plenty to keep you occupied. Like any one of us couldn't have a list a mile long! Know that as we pray for Tammy, we are also remembering you in our prayers, not just in thanksgiving for all each of you have done, but as we lift you up, asking God to meet your needs and those of your loved ones as freely and as willingly as He has for us. We also pray that in all circumstances, regardless, you will see His goodness. I know I say it all the time, but there is no goodness that is greater than the goodness of the One God, the true God, the only God, the great I AM.

It has been a while...I hope you'll think it's worth the wait!

I haven't been able to blog in what seems like forever. There is a myriad of reasons, but I won't bore you with the details. This isn't the Charlotte Update, it is much more about Tammy. So, I hope when I catch you up, I hope you will think it was worth the wait.

I am shocked at how, after all He has done, I still underestimate God. You see, yesterday, we were blessed with great news. Tammy was going to get to check out of CV-ICU and move to a regular room! I was so excited! We did the happy dance. I thought it was a great gift for Easter. I went home telling my kids and family how amazed I was that she was allowed to take such a big step on such a blessed weekend. It was a great day.

But today. . . TODAY God gave greater that I could have imagined. Some of you already know, but I won't keep the rest of you in suspense. Today we got the news that, as soon as insurance approves it, Tammy will be LISTED! CAN YOU BELIEVE HOW GREAT GOD IS? They waived the 200 foot requirement, and now we just have to wait for the paperwork. Again, I was happy with the appetizer, while God was preparing to serve the main course! "To Him who is able to do exceedingly, abundantly beyond all that we can ask or imagine, to Him be the glory for ever and ever. Amen." And a great big WOOOO-HOOOO!

OK . . . so the question everyone wants to know . . . how long after she's listed til she gets a transplant. Short answer, no clue. Long answer, she will be high up on the list if her spirometry was as low as they expected. They prefer to transplant from a donor with the same blood type, but in rare (urgent) cases, they will transplant lungs of a different blood type. However, on any of the lists, she is near the top, if not the top, for each type.

How long? That is in God's hands. By now we should all be saying, "DUH!" when you read that last statement. Please, dear Lord, help us to learn that lesson. Remember, to save this precious life, someone will have to lose someone they love. It is a bittersweet thing. If I did not know that God already had all of our days ordained, if I couldn't rest in my trust in Him, if I did not believe He was purposeful, just and loving, I could not, absolutely could not, pray for a donor. But He is just. He is loving. He does nothing without a purpose. He is amazingly patient and never too late. And though, sometimes He says a resounding, "No!" I will completely trust in the no's as well as His yes's.

I pray that this Easter, in light of all you have seen God do in our lives, you will see God as greater, Jesus as more precious, and the Holy Spirit more intimately involved. Jesus trusted God's no's, too. Remember, in the Garden, He prayed, "If there is anyway this cup can pass from me, yet, not my will but Yours." He knew the cross was looming in His tomorrow, but He asked anyway, and submitted to God's will. He submitted to the no because of a verse I read earlier this week, I can't remember if I posted it, so I will share it now, and if it is redundant . . . I apologize.

"Let us fix our eyes on Jesus, the author and perfecter of our faith, who for the joy set before Him endured the cross, scorning its shame, and sat down at the right hand of the throne of God." (Hebrews 12:2)

He knew that not only would Heaven be waiting for Him, but that because of His death, one day you and I could be there with Him, too! The thought of spending eternity with His Father and with you was the joy that made the cross worth going through! You were worth every cut, every curse, every ripped muscle, every painful breath, every single drop of blood. Your eternity is bought and paid for, all you have to do is believe in Him, believe that He is who He says He is and that He has done what He says He has done. Just believe. Sounds simple. Actually almost too easy, but remember, grace is free, not earned. If you could earn it or had to meet some goal, it would be an earned wage, not a gift. Romans 6:23 says that "the gift of God is eternal life in Christ Jesus our Lord."

So, dear beloved, fix your eyes on Him. Maybe you want to believe, but it is hard to reconcile everything in your brain. Maybe you believe, but you don't think you believe enough. Choose Him, choose to believe, and He will perfect it in you. As you learn more about Him, you will learn to trust Him. The more you learn to trust Him, the more results you will see as you exercise your faith. The more your faith grows, the more you will love Him. The more you love Him, the more you will want to learn about Him. Catch the cycle? He can't wait to give you the main course. Hmmmm . . . do you think there might be desert? If there is or not, I am definitely enjoying the plate He is sharing with us today!

Honored Servant

"Each year the Euless Police Department selects an outstanding civilian employee as the recipient of the "Bill Harvell" Civilian of the Year Award. This award is presented to honor the memory of Lieutenant Bill Harvell who passed away in 1975. At the dimeof his death, Lieutenant Harvell commanded the civilian services of the Euless Police Department. the recipient of the year's award has been chosen because she exemplifies the high standards set by Lieutenant Harvell. She is recognized by all as someone who is always willing to go the extra mile to improve the work environment and assist those in need. Her own personal needs routinely take a back seat to the needs of those she serves . . . her police officers, fire fighters, paramedics, and citizens.

For her outsanding service and performance, Tammy Barnes has been selected as the 2008 recipient of the Bill Harvell Award.

Signed, Michael G. Brown, Chief of Police"

So many times we honor people for their achievements. Top seller. Fastest runner. Best actor. Yet, this past Friday evening, we were invited to a dinner where those that were being honored were being recognized, not for their measured success, but for their immeasurable service. They were people like the reserve officer who had served for decades as a volunteer and was now retiring. Or the officer who, even though he was receiving treatments for cancer, still managed to come in to work as often as he could so that he could serve the City. And then there is Tammy, who is often embarassed by the recognition, or who would name 2 or 3 others she thinks could have won the award she was honored to receive. These people did not achieve special numbers or percentages of success. It was not based on degree of education, nor on annual salary. They were honored because they served, often selflessly, their fellow employees and the citizens of the city they represent.

I was struck at how clearly the Biblical principle of "greatness" was exemplified in the life of those honored at the dinner. Over and over Jesus said that if we wanted to be great, we must serve, we must become like the "least of these." Remember, "the last shall be first"? It is a crazy, backwards principle, but one that Christ lived even to his last moments on earth. Yesterday, my pastor reminded us of a dinner where honor was bestowed, not with awards, but with a crazy act of service. It was Jesus's and the Disciples' last evening together, and the Disciples were arguing about which one of them was going to be greater in the Kingdom of Heaven. Jesus overhears them and says tells them to be great, they must become a servant. Then, He begins to prepare a basin of water and gather towels, so the King of Kings, the Creator of Creation, could wash their feet. Imagine, the One who performed miracles, the One who turned water into wine, the One who made the lame man to walk, the One who calmed the stormy sea, the One who could have spoken the word and their feet would have been clean, chose to kneel on the ground before each of them, gather their feet into His hands and scrub the filth and dirt of the streets off of them. Not because they were griping. Not because He thought if He asked one of them to do it, they would gripe the whole time. Not because He knew if He did ask one of them to do it, that disciple would be considered "less than" by the other disciples because of their culture. He did it because He loved them enough to show them that He would even take the most menial task to serve them. And to me, one of the way you show honor to someone, you serve them. Yet, the disciples are not the honored ones in this story. It is the man who bowed his knee and who, a few hours later, would lay down His life, who is exalted and celebrated.

Ah, but I am not done, because there is something else significant. He didn't just wash the feet of His friends, He washed the very feet of the one who would turn Him over to the ones who were plotting to kill Him. Christ washed the feet of Judas. Isn't it interesting that even to the last betrayal, Jesus still longed for the soul of the man who would had made a deal with Satan. Sweet beloved friend, Jesus still longs for your soul as well. There is nothing you have done, nothing you can do, nothing you want to do, nothing you will ever do, that will stop Him from passionately pursuing your soul. He longs for you. He loves you. He wants a relationship with you. And He wants these things, not so He can have more people in Heaven than their are in Hell, not so He can win a contest. The battle is already one, and He is already the victor. He does not want you to come to know Him for His sake, He wants a relationship with you for your sake.

This week is Easter week. There is no easier time to come back to Him or to discover Him for the first time. Don't let pride or fear keep you away. If you want to talk or have more questions, you can contact me, either in comments or by email or by cell phone. If you need a place to attend church, let me know where you live, and I'll help you find a place. If you need to cry or to celebrate or to pray with someone, you know where to find me. The best part is that there is a promise you can go to the bank with, God said, "If you seek Me, you WILL find Me." (emphasis mine) Seek Him, my friend. He already knows where you are, and where you've been, and He can't wait for you to get to know Him, so you can understand the magnitude of His love.

I've not forgotten

We are having a busy weekend. I am trying to catch up with mom/wife/homemaker duties this weekend. I will be posting later today about a special honor that Tammy received this weekend. Please come back to check this evening. I apologise if you have been checking all weekend.

A Thought about Firsts

We have had all kinds of firsts today. Today, Tammy "got voice" and tonight, she gets chocolate milk! Let me tell you how amazing that makes me feel. We are celebrating in the back and in the waiting room. It is really funny because our waiting room friends are all volunteering to go get the chocolate milk. She also got to leave the sixth floor for the first time. She actually traveled down stairs to the radiology dept. for the swallow study. Like everything with Tammy, it was a bit like a party. She knows all the radiologists down there by name, so they had a blast picking on each other.

With all the celbrating though, I can't help but think about an interview I heard on Focus on the Family this morning. Dr. Dobson was interviewing a family who lost a daughter in an automobile accident. The morning after she was killed their other daughter said, "This is our first sunrise without Whitney." Immediately, I felt thankful to God that those kinds of firsts were not the ones we were experiencing. You know, there is nothing as sobering as a loss to bring perspective, and no one makes it through life without losing someone or something of great value. Do yourself a favor, friend, start valuing the little things now. The smell of a sweaty little boy after playing outside. The dimple in the cheek. The sound of laughter. The feeling of arms wrapped around your neck. The taste of chocolate milk. The feeling of rain on a summer morning. And, as you treasure all you have been given, think of someone who is traveling through their firsts since loss. First Mother's Day. First Father's Day. First day in the church pew alone. First time the flower's bloom. First time for whatever matters. Then, give that person a call and tell them you are thinking of them.

G. - You are in my prayers today.

Not Gonna Save this For Last

The other day I came across this verse, and I thought that it would be great for the last post to the blog. Today, though I am convinced that it was for the "now" not for the "later" that He showed it to me. Then, I will tell you about Tammy.

"We do not want you to be uninformed, brothers, about the hardships we suffered in the province of Asia. We were under great pressure, far beyond our ability to endure, so that we despaired even of life. Indeed, in our hearts we felt the sentence of death. But this happened that we might not rely on ourselves but on God, who raises the dead. He has delivered us from such a deadly peril, and He will deliver us. On Him we have set our hope that He will continue to deliver us, as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many." 2 Corinthians 1:8-11

We truly felt the "sentence of death" for Tammy. And I have done my best to keep you informed about the hardships we have endured - though we are far from Asia! I hope that when you think of this family, when you consider Tammy, you will realize that we have fully relied on God. We know He is continuing to work in healing her and moving her toward the next transplant. But more than what you think of us, we pray that you can more clearly see what God is doing, not only in Tammy's life, but in your life, because God has definitely granted favor to us in answer to your prayers. Rejoice in this fact. Rejoice in God, in His goodness, in His holiness, and in His perfect plan (which by the way, includes what we call the "bad" parts of His plan!) I have a new understanding of God, not only that He can bear me through something, but He also, sometimes, grants us great victory.

Tammy is feeling the victory today. She was able to take a few steps to the chair and back to the bed. They are bearing much of her weight, but she was able to actually pick up her feet and lock her knees to support some of the weight. (I almost wrote "load" but decided that could conjure pictures of 18 wheelers, which would be highly unfair to do to someone who is in the hospital. LOL!) She did not have to go back on the vent at all last night, and she slept from 10:30 pm to about 5:30 am. That is the longest stretch of sleep she has had without sedation medication for longer than she has even been in the hospital. I think that breathing on her own is making her tired, but not too tired, and her blood pressure and oxygen levels are staying right where they should be, praise God, so they are not talking about putting her back on the vent to "rest."

It is possible that tomorrow they are either going to try the next trache or a swallow study. I am not sure which she mentioned. Either way, we are one day closer to chocolate milk! They are letting her swish water in her mouth and use the suction wand to spit it out. It is a little like teasing her with what "could be," but she insists it is way better than nothing. As long as there is ice in the water AND if she has a straw, right, Tracie?

No one ever really know what tomorrow will bring, but we can be certain that God does. Rest in the knowledge of His omniscience, and rejoice that He does not leave you alone in the mean time.