Thursday, March 15, 2012

For crying out loud it's spring already!

I am so thankful for the text messages that show up in my phone. "Strengthen my feeble hands steady my knees that give way, say to those with fearful hearts, be strong, do not fear, your God will come" Isaiah 35:3
Brenda Johnson sent me that text last week. How amazing is that, a verse for Gary and me! Gary went to the Neenah/Menasha YMCA this week to go swimming. Well, not swimming but floating. He had his last treatment of IVIG and was able to have his pic line removed. He was so shocked when he found out that the line went through his arm to just next to his heart. Good thing he was sleeping when all the bad stuff was happening. Because the pic line is out, he is able to go to the pool which I am sure he would have loved to be able to do that several weeks ago. My friend Nancy Wilkinson and I watched him from the viewing area, his excitement was palpable. I am so thankful for his physical therapist Dan who Gary has wrapped around his little finger, I could see Gary telling him just how things were going to go and Dan complied. He is a great guy! There is something so freeing about being in the water, laying back and just floating. I could not help but think about how that feeling would be magnified for Gary having been in a bed or chair for the last 9 weeks. The look on his face was sublime and I could not have been more thrilled for him as raised and lowered his arms snow angel fashion. Gravity has been an enemy to him and his lack of upper body strength keeps him from being able to move his arms. He was able to stand at the side of the pool and walk up and down the wall. He told me he was wondering if his feet would remember what to do, and they did.
We found out Tuesday that Gary is going to be discharged on Thursday March 22. It's one of those good news/bad news deal. Funny how you never hear someone say "I have good news and I have good news" It would make it so easy to choose which one you wanted to hear first. Well, the good news is Gary is being discharged after 10 weeks of being at Theda Clark Medical Center he is heading back north to Shawano. The bad news is that he will not be able to come home, so I am being charged with the task of finding a skilled nursing facility with an excellent rehab department. I have to admit, I am disappointed. When he entered the hospital January 16 I simply assumed that when he was discharged I would bring him home.
He told me last night that after his therapy they had put him in a regular wheelchair and he used his feet to get himself back to his room old man style. When I look at how weak he continues to be in his upper body, I remind myself that 6 weeks ago he was a quadriplegic I cannot help but be in awe of where God has brought him. Oh how He loves us!!!! And when I was told by someone this week that Gary may not walk for a year I heard Kris Fairless' voice in my head saying "whose report are you going to believe, this report or the report of the LORD". Going for the report of the LORD!
I think I have found a great place for him with a terrific therapy department. Our challenge will be the insurance. Please pray that there will be favor with Insurance Company that Gary would get the therapy time he needs. We continue to covet the prayers of the faithful.
"ask and it will be given to you, seek and you will find knock and the door will be opened to you". I find it interesting that verses I have committed to my memory many years ago somehow allude me. And then, I open my devotional for the day and the power of God's word super cedes any concern I have at that moment.
We are blessed and highly favored. We continue to thank God for all who have allowed themselves to be used by God by pounding heaven on our behalf, sending daily text messages of encouragement and love (thanks B) surrounding us with love, meeting so many of our financial and practical needs. May you be blessed, many have given to us out of their own need and I am overwhelmed.
I remain, Relentless after Him,
Monica

Wednesday, February 22, 2012

Getting Around

A lot of things happen when I am not at the hospital and sometimes I get really great surprises when I get there. Last Friday I found Gary sitting in a chair, but not just any chair. He had been provided a motorized chair that he is able to operate by moving his head the technology is incredible to me. Saturday we checked out a pager and went outside with my brother Charlie. I guess he needs the pager just in case he decides to make a break for it, but we are pretty sure the battery would die before he got too close to downtown Neenah. The chair affords him some mobility but more importantly a little sense of control which I know he needs so badly. He can't scratch his own nose but he can choose to go visit a staff member or another patient on the unit, what a blessing that is.
I talked to a woman I know who had GBS 8 years ago and she said to me "you know, GBS means getting better slowly". And I do know that because no one will let you forget it, lest you would become discouraged about the slow progress. We choose to focus on the "getting better" part of GBS. Gary's recovery is progressive, building small sucessess one on top of another. Sunday Gary was not able to turn on the small toggle switch that powers up his chair, but yesterday he did. We are celebrating every little success. If sheer will and determination was all it took for Gary to get beyond his nerve damage and weakness he would skip out of rehabilitation tomorrow. Sadly, it is not so he presses on in faith and confidence that God has not left him nor forsaken him.

I struggle every year during this season. I am quite sure I was not really meant for Wisconsin winters and February is especially brutal for me. This year is no different and as badly as I do not want to sink into the darkness, I find myself there again. I read my devotional this evening after work and unruly dogs and garbage that needs to be taken out and yada yada. I am so sorry I waited because I am convinced that these words which I know were meant for me today would have reminded me of the place I really want to be on this journey, completely dependent on God. Jesus speaking..."You Need Me Every Moment....there are pitfalls you must be on guard against: self-pity, self-preoccupatuion, giving up. Your inadequacy presetns you with a continual choice-deep dependence on Me, or despair."
I wish I could say that I have not had bouts of self-pity and self-preoccuopation since Gary's illness began January 15, but that would not be true. I know that it is only in that deep dependence on God will I ever be able to continue to move forward and continue to climb this mountain that is before us.
We are so blessed and thankful for the crowd of people who are at the base of the mountain cheering us on in the form of prayers, kind and encouraging words and blessing us richly with gas cards and monetary gifts.
In sincere gratitude to God and those who He has used to bless us: I remain relentless after Him.
Monica

Monday, February 13, 2012

Rehab

Gary was transferred to the Neuro Rehab unit on Thursday 2/15. There is a new Sheriff in town on Rehab and it is not Gary! I should probably say there are new Sheriffs in town and they are the entire Rehab staff. He has a board on the wall in front of him where they list his schedule for the day which includes Physical Therapy, Occupational Therapy, Speech Therapy, Psycho Therapy (just kidding). I know he is tired just from reading what he will be doing during the day but this is the boot camp he needs to get him moving in the right direction. It is hard to see him looking so tired all the time but this is one of the goals we press on toward. He still has the trach and the feeding tube but don't think those will stay in too much after this week. I have had no confirmation on that from the Doctors but hey might as well be positive.
Friday night we ate dinner as a family in the rehab dining room thanks to Cathy Gast. We kind of took over the dining room, but all the other patients had already eaten so we didn't feel too guilty, but it was classic Mueller family day dining. Loud, obnoxious and filled with laughter and love. Friday night was the first time Gabe was able to see his Baboo since January 16th. I don't know what was harder to see, Gabe wondering what was going on with his Grandpa or Gary not being able to stretch out his arms to hold Gabe. We  are not discouraged, because we know that it is simply a matter of time before that will happen. We are confident in God's promise that he has plans for Gary's life, plans to prosper him and to give him a hope and a future(Jeremiah 29:11). I love that all of God's promises are Yes and Amen (2 Corinthians 1:20). What an incredible foundation to stand on when it could feel like our world is crumbling.

Dear Reader, we have seen God's faithfulness over and over again throughout these last 4 weeks (yes it has been 1 month today), and I had the incredible blessing of being able to pray for one of Gary's ICU nurses who has the chronic form of GBS. She has relapses and was a patient on the same unit with Gary and then in Rehab. I spent several hours with her over the weekend. It is hard to describe, I know God is moving in her life and he let me come along. AMAZING!!!!

I am trying to think of the places Gary and I have spent Valentines Day over the 30+ years we have been together and frankly not one is popping into my head. I am quite sure I will always remember the Valentines Day we will spend together on the Neuro Rehab floor at Theda Clark Hospital tomorrow night. There will be no steaks or dinner music, but I look forward to spending the evening with him. Hope he can stay awake!
Treasure your time with your loved ones tomorrow and everyday, the reality is we are not promised another breath. When you are breathing in and out, make each breath filled with love.

"Because of God's great love, we are not consumed". Lamentations 3:21

Relentless After Him,
Monica

Tuesday, February 7, 2012

IMU

Gary has been moved from ICU to IMU, Intensive Medical Unit, 2nd floor, room 266 and I do not have to pick up a phone,announce myself and ask for admittance to the unit. Probably doesn't sound like a big deal, but every time I walked out of ICU, even if just to get a cup of coffee I had to stand outside and ask for re admittance, I gotta tell you I was a little tired of this litany...pick up the phone...on the other end "ICU this is (whoever was answering the phone, many names)...me-"Hi this is Monica Mueller, my husband is in room 250, would you please ask his nurse if I am able to come back" other end- (heavy sigh) "let me ask"-waiting on the other end listening to piped in music-"ok come on in". Seriously the same thing 10 times a day for 21 days, that equals 210 times. I am over it.
Yesterday when I arrived at the hospital after work I found Gary in room 266 sitting up in bed eating something that I cannot honestly say I would ever see him eat, much less with a huge smile on his face...pureed chicken. He is not able to feed himself and quite frankly I imagine this to be an extremely difficult exercise for him it is a picture of what surrender looks like. Laid bare to what other people can and will do for you. I cannot help but think about this is what God wants from us in surrender to him. Completely trusting that He wants the absolute best for us, if we would only submit to his plan for our lives.
The nursing staff on this unit is as loving and caring as everyone we met in ICU and I had great peace when I had to leave there today, unable to return until Friday morning because of work.
He continues to need quite a few respiratory treatments through the day and the size of the trach tube was reduced today, moving him one step closer to actually having the trach removed.
He is very weak and I am asking for prayers specific to his strength returning as a result of repairing neurological systems. Anyone who has ever shook Gary's hand knows that he had a ridiculously strong grip, I know he is looking forward to the ability to shake hands again even with a normal grip!
He is very grateful for the prayers of the faithful knows well that the promise of God that "fervent, effectual prayers of a righteous man avails much".James 5:16

I woke up the other morning and decided I know what the definition of exhaustion is. It is waking up and wondering when you can go back to bed. I am there. Yesterday I walked into my office and work and just began to cry, my poor co-workers. I could not figure out why I was crying because we had such good news the night before. I just looked at them and said "I'm so sorry, I am just exhausted".
This morning I opened my devotional to Feb 7 (can that even be right???) and this is what I read "Come to me for rest and refreshment. The journey has been too much for you, and you are bone weary, do not be ashamed of your exhaustion."  I cannot on any level imagine how anyone can deny the Sovereignty of God!!!! Somewhere in time, God anointed Sarah Young to write this days devotional for me...for this day.
                                Adonai.... Oh how he loves us!!!!
If you want to read the rest of this you need to buy "Jesus Calling" by Sarah Young.

In relentless pursuit of Him,
Monica

Sunday, February 5, 2012

Progress!!!

Every day I go to the hospital I feel like I did every report card period when I was in Catholic school. In those days, they actually handed us the report card and trusted that they would end up in the hands of our parents. Four times a year, panic would rise up in me, did I do well or should I really have studied as some people suggested would be a good idea. Outside the room are essentially flags, each color meaning something to the staff. The green one says "vent weaning" on it and that is the flag I have been looking for to be indicated outside room 250. I know that if they were beginning to wean Gary off the the vent, the possibilty of him having to be transferred to a vent facility in Milwaukee was less likely. And even though the staff has not flown the green "vent weaning" sign, that is exactly what has happened (yay for good report cards). It has been a process since Friday, but slowly Gary has remained off the ventilator and when I last saw him this afternoon he had not received any ventilation for about 32 hours, receiving only moisturized oxygen through the trach tube. Yesterday they gave him a "passey muir" valve they are able to plug the trach tube with which allows him to speak. It is a little more difficult to breathe with it in so he needs to be pretty well rested to use it.
The other question looming on the horizon is where would he go when he is able to leave ICU. Seeing as how Milwaukee is mostly out of the picture, he has made great strides in his breathing, Rehab was the big question on my mind. Theda Clark has a Rehab unit, but unless he was completely off the vent and able to participate 3 hours per day in his own rehab, this was not an option and I was given resources to attempt to find a facility that would take our insurance. In my heart I want Gary to stay at Theda Clark, at least for now. So that has been kind of the thing that the staff has not wanted to commit to.
Today the Rehab Doctor came to visit him and talked to the nurses (who are really championing his cause), she looked at me and said "bring in clothes and shoes for him, he will need to be dressed everyday on the Rehab Unit.
                                                          Oh How He Loves Us!!!!!

Not exactly sure when that will be, but it he should be out of ICU soon., it has been 3 long weeks .The staff has been outstanding and loving and it will be hard to build relationships with the new staff we will meet, but I believe God's love, faithfulness and goodness was demonstrated to so many people we came in contact with these last 3 weeks, and I know it will continue. Cary, a very sweet and dedicated ICU nurse who has been Gary's primary care nurse so often during his stay told me once she returns from vacation she intends to go find him wherever he is.
Thank you all for pounding heaven for Gary's recovery, we are unable to adequately describe just how thankful we are. And we are thankful for all the faithful friends who are willing to share this difficult time by visiting and trying to direct our attention elsewhere even for a little while. Thank You Bretta for being able to read lips so well!
As Always,
Relentless After Him

Wednesday, February 1, 2012

Need to Breathe

I have to admit the first time someone mentioned that Gary would need a tracheostomy I just imagined that as some kind of "sentence" but it has been sweet relief for Gary, even though he still is unable to speak. I had no idea how difficult reading lips was and we are finding out that so many sounds are formed in a very similar fashion. We joked about the fact that it is difficult enough to do this lip reading thing but then when one of the lips is concealed by a big, unruly mustache it makes it nearly impossible! Anyone who knows how Gary feels about his facial hair will be surprised when I tell you he asked me to trim his mustache. Me? " I don't know nothin' about trimmin' no facial hair". Ever the consummate coward I asked Dana (one of our daughters)to do it and she actually did a very good job. One more item for the resume' Dana.
We have asked specifically for prayer regarding Gary's breathing. They have done some breathing trials, turning the ventilator to a cpap function which requires him to initiate and continue the breaths, but the vent provides a "boost". Have I mentioned yet that I have kind of a love hate relationship with the neurologists (plural,we are on the 3rd one). I love that they are brilliant and taking wonderful care of Gary, I hate that I cannot really connect with them on any kind of human level. Tuesday the neurologist of the week informed me that if Gary did not start making strides in breathing on his own he would be transferred to a "vent facility" in Milwaukee. Yikes that was compassionate. I understand that Gary is not in critical condition but he didn't even offer to buy me a cup of coffee to help the medicine go down.(Mac, seriously think about pediatrics).
 We have asked specifically for prayer regarding Gary's breathing. They have done some breathing trials, turning the ventilator to a cpap function which requires him to initiate and continue the breaths, but the vent provides a "boost". Yesterday, he was off the vent, receiving only humidified oxygen for about 30 minutes. And he was off today a substantial portion of the day sat in the chair for a couple hours 2 times. This is a big day for someone with a severe case a GBS and he is pooped, really pray he will sleep well tonight.

Tuesday was a rough day, not to be redundant but the neurology staff does not really subscribe to "feel good" medicine. Truthfully, I don't need much, dangle a carrot in front of my nose. It doesn't have to be the giant Bugs Bunny variety of carrot, I will settle for a baby carrot, even those shaved down, less than a half of a bite carrot. I don't need much.
When I read that I realize that I don't even need a mini carrot from a neurologist to give me hope, I am in close communion with the giver of all hope, God.
I tell people all the time that I am not looking out much into the future or what that is going to look like, all I am doing is the "next thing". Truth is I probably say it 100 times a day. Today, in my devotional from Sarah Young, the first sentence is "Follow me one step at a time, that is all I require of you". These daily reminders that God has not blinked, we are still on his radar. The truth is, it is NEVER God who falters, it is me.

Last night before I went to sleep Kara (daughter by marriage) called after she and Christian visited with Gary. I know she could hear the exhaustion is my voice as I told her I just wanted to sleep. This morning she sent me this text: "Woke up in the middle of the night and felt compelled to pray for you. numbers 19:23 came to mind. A promise I have relied on for years...God is not man that He should lie, nor human that he should change His mind". And Bam folks there it is, the complete truth of how we can stand on God's promises to be faithful and present and for us and infinite other divine characteristics. EL ROI "The strong one who sees."

"Because of God's great love, we are not consumed" Lamentation 3:22
I Remain,
Relentless after Him

Friday, January 27, 2012

January 27 2012
Gary had a tracheostomy put in yesterday to support his breathing. He is still constantly on the ventilator. Having the trach, he is able to be a bit more mobile and most of all his face is no longer restriced by the "mask" that was holding all the vent tubes in place. It felt good to see him relaxed after surgery and not constantly struggling against the tube. Although he still is not able to speak the family is confident in their ability to learn how to read lips! He rested very well and has been taken off the sedatives he was on so he will be able to stay awake longer and be able to participate in his therapy which began today. Color me thankful! He should also be able to have visitors and actually enjoy it. Brian and Brenda Johnson sat with him today so I could come home for awhile. He does not like to be alone so we are thankful for people who would like to visit. I have to return to work so I am able to preserve some of my FMLA for when he comes home and will need me more then.

Now to answer the burning question: Who is Sarah Young?
About 8 months or so ago I was given a devotional entitled "Jesus Calling", written by Sarah Young. Although I have read the devotions sporadically and declared aloud on many occasions "This is good stuff" I believe that God prepared the anointing on Sarah Young in advance for such a time as this. I have been encouraged, bolstered and help up spiritually, emotionally and physically by the truth of Gods word through this amazing work, and I am blessed. I know that this devotional will continue to encourage me and it is a 365 day devotional and I know I will need it every day. I gave these devotionals to Dana and Caitlin (daughters) for Christmas, it was in their hands just in time. FYI, not a believer in coincidence!

Today has been difficult for me having some brief moments of "fainting". I began reading in a book called Possessing the Gates of the Enemy by Cindy Jacobs, amazing book , on the cover it says "A Training Manual for Militant Intercession". Yikes, sounds a little scary. I have read this book before, and just needed a little reminder of what an Intercessor looks like. I was reminded of Matthew 18:19 and the importance of being in agreement with other believers in prayer. I stepped outside on the porch and began to cry out to my Abba Father and declare Jeremiah 29:11 over Gary and God's intent for him to bring good and not evil. I have to tell you that after being a Christian for a long time I tend to go past this verse and jump to verses 11 and 12 which speak of our part in that promise is about praying and seeking God, I think this is the accountability part. Anyway....when I came back in the house I had a Facebook Message from Jamie Wege citing the same verse. There it is agreement! In the midst of my "fainting" today God showed up!!!! Jehovah Shammah...The God who is present.
If you pray, please agree with me in praying for Gary to begin to get stronger so that his breathing comes into alignment with the way God created him, and if you don't pray...to quote Jean Klosterman " you are no good to me anyway!

I leave you Dear Reader with this encouraging word from Sarah Young's devotional which is written as if Jesus himself is speaking to us and completely scripture based.
"When things seem all wrong, trust Me anyway" (see Proverbs 3:5-6)

Relentless After Him,
Monica

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