Friday, December 31, 2010
...the Bible tells us that God remembers us. When we feel forgotten and alone, thinking that no one cares, God remembers. Every rainbow reminds us that God remembered us when the greatest calamity in history struck the earth, a flood so great that it almost wiped all human life from the earth (Genesis 8,9). God never forgets. “He remembers His covenant forever, the promise He made, for a thousand generations” (1 Chronicles. 16:15). Jesus said, “Are not two sparrows sold for a cent? And yet not one of them will fall to the ground apart from your Father. But the very hairs of your head are all numbered. So do not fear; you are more valuable than many sparrows.” “I will never leave you nor forsake you.”
Today I read to Allen and myself...
Psalm 43:5 Why are you downcast, O my soul? Why so disturbed within me? Put your hope in God, for I will yet praise him, my Savior and my God.
Allen is getting stronger, but fighting off two different infections and on two strong antibiotics. He goes off saying strange things and it seems to make perfect sense to him, but not anyone else. He remembers bits of his past, but there is a lot he doesn't remember. Even the speech therapist is concerned about it. I am tired of thinking about what will come next. I know, I know, trust for today, tomorrow has enough worries. I know all the truths. I can quote the scriptures, too. But my heart... my heart gets overwhelmed. I am trying to put my hope in God and I WILL praise him.
Saturday, December 25, 2010
Friday, December 24, 2010
We spent the afternoon with Allen for Christmas eve. His brothers - Michael and Kevin, our girls- Jamie, Christy and Erin, Christy's hubby Peter and daughter Betsy and I sat in the dining room at S.Tx. Rehab with Allen.
He drank tea, talked, listening, joked, watched his sweet Betsy run around and eat chocolate chip cookies, and opened a few Christmas gifts. Erin and I got him some drawing supplies because he always liked and was good at drawing. Christy made him a lap blanket. Jamie made him this incredible lap desk, sketching, painting and wood burning this cowboy on it with the words: "Courage is being scared to death and saddling up anyway."
That's what my Allen is doing. I know it's scary to have gaps in memory, not be able to get up and do what you want to do and all that he's dealing with. But he's saddling up anyway. He's doing what has to be done with a good attitude and he's going to get better.
Thursday, December 23, 2010
God is good... but we already know that!
Allen is off antibiotics now, the foley is out, he's eating well... and... yea!!!! the insurance company has okay'd another week. So... one day at a time with everything else, but at least it's one week at a time with insurance! LOL I really wish they'd just okay him staying until he's able to get around, but I guess they're worried I'd want him to live there! HA!!! I can't wait to get my man home again.
One of the nurses wanted me to be there for all of Allen's meal times, to learn how to get him in and out of bed with the lift and feed through the peg tube. I'm very willing to learn what I need to learn, but I'm still asking the Lord to finish his miracle and get him up and around. I got the feeling she thought I'd be nervous about taking care of him. One thing I learned through taking care of Mom and Dad while they were in hospice care at home, I can do anything the Lord needs me to do if I have to. Now do I always think I can do it? No, but nevertheless " I can do all things through Christ who strengthens me."
Tomorrow is Christmas eve. A lifetime ago I might have been sad to spend so much of the holiday at the hospital instead of home baking, crafting, wrapping, etc. Today, I am so grateful that I have a husband at Christmas that all I can do is rejoice... rejoice in the Lord's goodness!
Merry Christmas to all of you wonderful people who are standing with us, loving us, praying with us, helping us through this time. We are very blessed.
Wednesday, December 22, 2010
Choosing not to fret lately... it feels good.
I haven't blogged in a few days. I have a knotted muscle by my shoulder blade and it's awful. I got an adjustment which helped around it, but that muscle doesn't want to let go and let God! LOL
Allen had his barium swallow study yesterday and .... drum roll... passed and can start the road back to eating. He starts on pureed foods. I helped him with apple sauce yesterday. I'm going to take in some yogurt today. ... and ... mashed tatoes and gravy and punkin pie (no crust) for Christmas!
He is getting stronger. The therapists say it's a long and promising road. He makes small improvements all the time. He can stand between the bars for a while. He follows multiple commands. His speech is still a little 'lazy' sometimes, but mostly really clear. He is a little less confused.
We read to him most days. He really likes it. A sci-fi book he and Jamie have read keeps him listening. When I think he's asleep and stop his eyes pop open and he asks me to keep reading. It's awesome. My TV bug isn't too interested in tv. We leave the Christian radio station on some days and some days he just want quiet. I got him an MP3 player with the Bible, books and music, but it already died! GRRR... gotta find the receipt.
Pray that the insurance company stops making waves about the amount of time he needs to fully rehabilitate. They want to downgrade him to a nursing home for continued rehab. That doesn't make sense. Aggressive rehab is helping him so much. South Texas Rehab has been so wonderful. Each person seems to truly want to help him succeed. I have been impressed, blessed and grateful.
Also, please pray for Allen's brother and Mom. Michael was in the hospital again for heart pains and Mom visited him. When she was leaving she fell and injured her hip. She's in the hospital now and we don't know if it means surgery or what.
Blessings to all my friends and family! I love each of you.
Saturday, December 18, 2010
Thursday, December 16, 2010
Wednesday, December 15, 2010
Now unto him that is able to do exceeding abundantly above all that we ask or think, according to the power that worketh in us,
Unto him be glory in the church by Christ Jesus throughout all ages, world without end. Amen.
Tuesday, December 14, 2010
Matthew 7:7-11 7 “Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. 8 For everyone who asks receives; the one who seeks finds; and to the one who knocks, the door will be opened. 9 “Which of you, if your son asks for bread, will give him a stone? 10 Or if he asks for a fish, will give him a snake? 11 If you, then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give good gifts to those who ask him!
Sunday, December 12, 2010
Allen has a UTI (infection) that is resistant to the antibiotics and they've started a stronger one. I know they can do good, but I hate antibiotics for what they do to the body. He's lethargic and weak and his digestive system is a mess. Lord, please heal him-- all of him! ... and let the words of our mouths and the meditations of our hearts be acceptable in your sight, Oh, Lord, our strength and our redeemer.
One of our brothers in the Lord hugged me and thanked me for taking care of his brother. He thanked me over and over as I cried on his shoulder. You know those times when God uses someone to hug you and touch your heart? Allen had a hard time recognizing me and I know unintentionally hurt my feelings. I had a hard time and I needed that hug. Thank you, Lord and thank you, Mixon.
Thursday, December 9, 2010
Wednesday, December 8, 2010
Monday, December 6, 2010
Allen was moved out of ICU on Friday. Hallelujah! The S.Tx Rehab nurse, Lisa, visited Allen three times to assess and approve him and still by today (Monday) no approval to pay for this rehab facility by the insurance company. They still wanted to send him to a skilled nursing facility (Retama Nursing Home) GRRRRRR! We were praying.
But this morning... I called to try to just ask the insurance company to get the paperwork going and all I heard was "HIPAA, HIPAA, HIPPA" (whiny voice) I was nice to the ... person... but even though I've been making 'life or death decisions' for my husband for the last two months, that didn't matter, she would not talk to me about Allen's healthcare. I needed to get him to sign or they'd have to talk to him!!! Come on! He's recovering from a brain aneurysm. Well, I lost it... I yelled at her and hung up..... OOOPS! Yes, she was being jerky because I had previously talked to two different people about his care and they weren't fussing... "HIPAA, HIPAA, HIPAA". But to me it was just a way to not have me pressure them to get the ball rolling for his rehab care. So... I cried a while and asked the Lord to intervene and he did.
When I went to see Allen today and stepped into the caseworker's office she was on the phone with the powers-that-be at the insurance (still no assurance)... then she got the therapist on the line with the insurance I heard him saying such positive things about Allen's recovery and expectations for him in neuro rehab. I was holding my breath for a while as Allen was with the therapists and doing a swallowing study.
I got to go to therapy with him and he was sitting on his own on a raised mat (like a bed) and when they 'pushed' him over to each side he could right himself. Plus he was 'firing' all the muscles to get to standing up, though not at the point of standing. Not there yet, but he's trying hard. The swallowing study was positive, but he's not ready for liquids yet. They will begin working on pureed foods with him as he is trained to swallow properly again.
Well... a little bit after the insurance was to discuss their decision with the doctor, we got a call...
YEA! Approval. God intervened on our behalf! In an hour or so the ambulance transported Allen to Brownsville. Thank you, Lord Jesus!
It was a hard day for Allen... all the therapy, the swallow study, sitting up for hours, an ambulance ride.. then the assessments in Brownsville. He was totally frustrated and exhausted. I know this next few weeks will be hard on him because they will be pushing him and tiring him out. But... in the long run, we hope and pray that will allow him to come home and be functional as he continues to heal. We still ask God for a COMPLETE miracle. Keep praying with us as we KEEP OUR EYES OPEN to see what the Lord will do.
Thursday, December 2, 2010
Christy, Betsy, Jamie, Erin and I visited South Texas Rehab on Alton Gloor in Brownsville. It seems to be a great facility. The staff and patients all seemed so friendly. That says a lot. The paperwork is going forward to get Allen transferred there in a few days unless there are any snags... pray. Allen wrote 1 to 10 for me last night and after I did some mouth care with him (tooth brushing) he talked very well for a bit until he tired. He tried to write his name, but faded out as he was tired. I need to start with that one next time. The other day as I was leaving he told me, "Be good." I asked him if I had to. He said, "It helps." He's got his sense of humor. I love him so much and I'm asking... begging... God to finish his miracle in him and bring him back completely.
Sunday, November 28, 2010
Spent the afternoon and early evening with Allen. He was awake for most of it. We talked some until he got tired and began mumbling. He made sense through some of it and not through some. He seems to be getting stronger each day. After he got tired I put some classical and Christian music on and we just listened and rested. I drifted off to sleep a while and woke up to Allen staring at me. Payback... for all the hours I stared at him while he was in a coma.
My cousin, Roy, reminded me of something today via facebook...
Jesus said, Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid. (John 14:27)
How hard is it to not let my heart be troubled? Apparently pretty hard. I don't want to go there, but I do.
You know that song?...
He's still working on me
To make me what I need to be
It took him just a week to make the moon and stars
The sun and the earth and Jupiter and Mars
How loving and patient He must be
'Cause He's still workin' on me.
Friday, November 26, 2010
Allen's blood pressure is controlled with meds, Hallelujah. He keeps pulling at lines, though, and kind of irritated one nurse 'cause he asked Allen why he was doing it and Allen answered, "to keep you on your feet," then he told him he'd have to tie his hands if he kept it up, to which Allen answered, "Do what you have to do." Stink pot! He's not usually that aggravating or sarcastic unless he's really "P.O'd" with someone.
Please keep praying that:
- He'll keep getting stronger with BP controlled.
- Be able to get off all the tubes and lines.
- His thoughts, memories and brain function will return completely
- He'll get insurance approval for the right in-patient neuro rehab (hopefully South Texas Rehab)
My friend, Judy, and I were visiting this week and I was sharing with her that I have a struggle with not thinking about the "what-ifs" of the future. The Lord and I are working on that because my good days are when I can just get up and do what is before me, accept whatever place Allen is in that day and deal with it for that day, and go home at the end of the day, watch our shows with my girls, enjoy supper and go to bed. Amen... so be it. No mas. No menos. Lord, help me do that each day. Judy said that would be a great thing if I can get victory in that because most of us can't. I don't know about victory. I really think it's something we each have to consciously choose each and every day.
Remember this song?: "Lord, how they're increased that trouble me. Many are they that rise up against me. Many are they that say of my soul, 'There is no help for him in God.' But thou, Oh, Lord art a shield for me, my glory and the lifter of my head."
Monday, November 22, 2010
Sunday, November 21, 2010
... but I'm laying it down. Whenever I want to understand something I tend to research it to death. Google is my friend. I read and read and process and process. And not all of that is bad. It's saved us some money when we were researching to purchase something.
But in this case... I am going to do it less because...
"Whose report will you believe? We will believe the report of the Lord." I'm not talking about denial. I'm talking about the idea that just because in 58% percent of patients this or that happened doesn't mean that that is God's report for Allen. God has already amazed many for raising Allen from near death. I believe he will continue to finish His work on him.
The confusion Allen has been experiencing is disconcerting. Professionals tell me it is very normal for this response. Most come out of it, a few don't. Well, Allen is not most or a few. He is God's son and called according to God's purpose and plan for him.
This is my prayer today. "That the God of our Lord Jesus Christ, the Father of Glory, may give unto Allen the spirit of wisdom and revelation in the knowledge of Him. The eyes of Allen's understanding being enlightened; that Allen may know what is the hope of his calling, and what the riches of the glory of his inheritance in the saints. And what is the exceeding greatness of his power to Allen who believes, according to the working of His mighty power, which he wrought in Christ, when he raised him from the dead, and set him at his own right hand in the heavenly places."
ps... no rhyme or reason for the picture... just my cutie, Erin, being silly to cheer me up.
Thursday, November 18, 2010
Well, they capped off the trach and put on the nose cannula! Hallelujah... another step forward.
I rec'd some advice that was hard to hear and actually took some time away from the hospital today. Not that I've been there nonstop. I'm not a morning person and haven't rushed up there early and I leave most evenings early enough for supper and time with the girls. But... today I stayed home, did a little around the house, took a long soaky bath, ate lunch and shopped with the girls. We visited Allen for a little while. The nurse said he'd mostly slept all day and he was sleeping while we visited, so I don't suppose I needed to sit and watch him sleep all day Afterwards, I went to a Stroke Support Group meeting with Paul and Debbie. I miss Allen a lot, but I trust that a day here and there will do us both some good.
Tuesday, November 16, 2010
... for your friendship, your love, your acts of kindness and support...
I am so blessed by so many wonderful people who have just surrounded us with love and physical support through cards and encouragement, money, food, gift cards. It's so totally overwhelming. I hate the thought of being a burden to others. My girls fuss at me and keep me in line with it, but I never want to be so 'needy' that people get tired of me. The fact that I am so surrounded with so many arms has made such a difference in our lives. I don't know how to thank you enough.
Allen is improving all the time. For a few days now the things he talked about weren't making much sense to me, but I suppose his brain has been thinking of stuff I'm not understanding. Today Christy was with me in the room and after I left and walked Betsy out next to his window so she could see her Pa-Pa. He waved to her. Then he and Christy proceeded to have this heart to heart about me worrying too much, what was going on with his paperwork, how he wants his door and curtain closed for privacy, etc. Also, the physical therapist came in and talked about how good he is doing with movement and he wants to work him more because he has great potential for full recovery. They have Allen up on a table that stands him up and he's up to 65 degrees today.
So... after lunch we went back and later Allen and I were talking and I got so upset with him that I left the room. He was being a 'butt!' After getting over my upset, I went back to the room and talked to him about it and we kissed and made up.... Isn't that awesome.... our first fight! LOL I still don't understand everything he says when he gets tired and mumbly and that's what seemed to bug him, but he can get over it and try harder! I talked to the nurse about speaking to the doctor concerning removing his trach. He is breathing all on his own now and doesn't need it and he's pulled it out twice, which meant strapping his hands so he can't pull it out in his sleep. That doesn't thrill him either.
So... you've heard all the gory details about the last few days. I've cried so much again for fear his mind wouldn't be the same and he goes and has this heart to heart with Christy, so... I guess I shouldn't let the enemy make me worry so much.... Allen is right...of course... I worry too much.
Matthew 6:34 (New International Version)
Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.John 14:27 (KJV)
Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid.
Friday, November 12, 2010
Allen breathes well on his own and rarely needs suctioned now. He has had some bouts of anxiety and pulls on tubes and cords that he needs to leave alone. He pulled his trach completely out last night and they had to replace it. He is so strong and when one of us tries to stop him, it's hard. Most of the time he's not that way, but he has moments. It seems that what he was trying to do was take off the elastic cord from his neck. When I let him take it off and just laid the oxygen mask right at his trach, he was fine. Please pray for his peace.
He has asked for pictures and Jamie made up a little album for him. He is remembering more. He asked for Erin today by name. I can't always understand what he's saying, but I clearly heard that he is tired of laying and waiting. I told him to keep working hard to get stronger and he'd be out sooner. I have to say sometimes I am a little nervous about what to expect, but I'm still so glad I'll be able to have him around and know that if God wants him to have the testimony God's going to restore him to the point of being able to give that testimony.
We are doing okay. Christy comes often as she can. Jamie goes up to see him lots around her school projects, homework and tests. Erin and I are there all we can be, but coming home to rest and do stuff around the house. People have brought us meals and gift cards for meals for several days out of the week, so that's helped us a lot. Lots of people checking on us and several have visited Allen and prayed over him. We are blessed.
Wednesday, November 10, 2010
The valve... doo-hickey... whatever it is they put on Allen's trach is allowing him to inhale through the trach, but exhale through his nose and mouth and therefore... speak! How wonderful. "Linda"... "I love you"... "move over" (so he could see his girls, too...LOL) and "love the girls" or something like that.
The caseworker came in while Christy was in the room to let us know he is to be discharged to rehab at the end of this month. So... if he's in an inpatient rehab for a few weeks... maybe home for Christmas!!!! That will be the greatest gift! (after God's gift of Jesus!)
Tuesday, November 9, 2010
Happy Birthday to you... Happy Birthday my precious husband.... Happy Birthday to you!
Allen is 54 today. I'm so glad he had another birthday and hope next year will seem happier for him. This was a quiet day. I was warned that these days will come. He seemed a little fidgity last night and today was just quiet.
Things are progressing.... slowly but surely...
Allen's trach was changed today for a slightly smaller one with holes that will allow him to talk. Speech therapists will begin to help him with this.
It was a hard day, but still a good one. A friend who is a chaplain at Solara left me a note that included a reminder to walk by faith and not by sight. I need that today.
I have had so many friends contact me and bless me with meals and encouragement. What would I do without you all? I am eternally thankful that God has brought you into our lives.
Thursday, November 4, 2010
Papers scattered that I'm trying to go through.... check... that's normal.
Clutter that I walked in a dropped or shoes that constantly get left in the livingroom... check.. that's normal.
Dogs that roll into whatever they're not supposed to roll in right after they've had a bath... check... that's normal.
Going to the hospital every day to see my beloved... nope... not normal and I'll never get used to it... BUT... I am so grateful that I have him around so that I can go visit him.
A day or two ago when I was telling my buddy, Judy, about Allen's progress, she was rejoicing at how far he'd come in a week and a half. I had to stop and realize she was so right. I had gotten discouraged because of seeing what Allen isn't yet able to do that I was losing sight of what he is already doing. Yes, it's frustrating for him when he can't communicate what he's trying to tell me and that is frustrating to me, but... he's using arms and legs and trying to talk. He's being cute, raising his eyebrows at me... he says so much with his eyebrows! He's getting more movement every day. He's off the vent and on oxygen during the day. His lungs are healing and his blood pressure is getting better. Every therapist that comes in says he's getting better. Thank you, Lord Jesus!!! You are a faithful, healing, miracle working God. God spared his life -- returned his life !!!
I am able to sit with him many hours a day and not cry and worry about whether he's going to live. I can stitch, listen to television, read the Word to him and sing. I really need a new repertoire. There are 8 or 10 songs I have sung to him over and over because God ministered to me through them for these weeks.
My girls are taking good care of me. I am so happy that I can be their mother. And thank you, Lord Jesus, that they will still have their Daddy's encouragement, prayers, teasing and corny jokes!
Have you hugged your husband today and told him how much you love him and just sat and listened to him? Do it.
Sunday, October 31, 2010
I had hoped Allen would be a little more wakeful by now, but the doctors say it will just take time. His brain has suffered a lot of trauma and he is healing.
Today is Erin's 12th birthday. Like I put on facebook, a girl spending her birthday away from home with Daddy in the hospital is not exactly what she'd want, but what a joy she is. Friday night when her sisters had offered a night out somewhere special, she chose to come to the hospital where I'd been waiting through Allen's surgery, share pizza in the family waiting room and play Uno with the family. What a kid! Saturday, Christy took her for a pedicure, then she got her presents, which were lots of books and some stuffies and computer coins for games she plays. Saturday night we went to the movies to see the Legend of the Guardians, the Owls of Ga'hoole. It was fun. We were late for the showing so we had a root beer float and played cards at Red Robin while we waited for the next one. Today, we got up, visited with Daddy several hours, then had a picnic at Herman Park. We rode the transit train, the park train around the park, got on the paddle boats, then back to the hospital for a while. This is the day the Lord has made and we rejoiced and were glad in it.
Jamie picked up the puppies today. My dear friend, Susan Pockrus, had them boarded at a homey place where they have been groomed and pampered, I'm sure, more than they get at home. Cocoa had had hot spots that I think from nerves with home turned upside down. They are all healed up and the pics Jamie sent me were so cute.
I want to tell you about one of the respiratory therapists Allen had. Her name is Sheba and she is a cute little lady that took such good care of Allen's breathing. She was also so friendly with us. Another new friend from Houston.
Well... Erin and I have packing and picking up to do and I'm tired. Hope to see all my Valley friends soon. Love to each of you.
Friday, October 29, 2010
It was a hard day today. Allen got the shunt and came through fine, but there was a mixup in letting me know and I sat in the surgery waiting room for over 5 hours before they let me know... ooops... he went back up to his ICU bed 3 hours ago. Grrrr.... I know it was just somebody fouled up, but I had been asking and they kept saying he was still in surgery. I was praying and working to not have vain imaginations about why it was taking so long. When they told me he was out and had been for so long, I just balled.
Allen is okay, though, and that's what matters. The kids were wonderful. We were supposed to come back and play uno tonight for Peter and Erin's birthday, but since it was so late and I was needing to sit with Allen a while, they brought pizza and uno up the waiting room so we could all be together. So... I'm decompressing now.
Betsy is sleeping at our place again... the pack and play was still here so we though she could just stay... after her bathy she was asleep in 2 seconds...what a sweetheart.
Well, Jamie, Christy, Peter and Betsy will be heading back to Harlingen tomorrow and it will just be Erin and I til Monday. An ambulance will be bringing Allen back to Harlingen 10:30 Monday morning, so we'll be back late afternoon, I suppose. This part of the journey is about done, but I know we still have a journey to go. For years now I've said... Enjoy the Journey. I don't know that this is the journey I would have chosen, but I'm glad Allen will still be part of the journey. I can't wait to see all my loved ones again. I've missed you.
I wanted to tell you about another wonderful person here in Houston. One of Allen's nurses has been Al. He is so kind and considerate of Allen. The way he moves him and speaks to him shows that he has a kind heart and really loves doing what he does. I'd had several tell me he was great, but I saw it in action.
Thursday, October 28, 2010
Allen was incredibly sleepy today. He would still respond when he was awake, but not awake much. It bothered me, but they checked the pressure in his drain and it wasn't too high. They will put the shunt in tomorrow afternoon. Please pray it goes well and no infection or problems. Also, please pray that the transportation to get him to Harlingen goes well. We can choose air flight which would be easier on him in many ways and definitely quicker. We are praying the insurance will kick in for it. Or the ambulance would be longer and rougher, but might be better in some ways, too. Lord give us wisdom and favor.
We are all tired, but it's so nice to have family here. Christy, Erin and I have been sitting with Allen most of the last two days together, since Jamie hasn't felt well. Peter has had Betsy to entertain. Christy and I (Erin, some) have sat and embroidered and talked and loved on sweet Allen. It's been peaceful. I still miss Allen's voice so much and can't wait until I can hear it again.
I want to tell you about another couple of God's ministers...
Janine is a stroke coordinator at St. Luke's. She visited me soon after we got there. She shared with me that she lost her husband to an aneurysm 15 or so years ago. She really understands all the questions and concerns we've had and interprets doctors orders and asks questions for us. She has been encouraging and calming. She helps us to walk out what we're going through. Lord, bless her, her new marriage and family. Return blessings to her 100-fold.
Allen's neurosurgeion is Dr. Duckworth. He comes in often to check on Allen and talk with us. He answers questions and concerns and has continued to care for him along with the neuro intensive doctors. He will be putting in the shunt tomorrow. Lord, guide his hands and bless him for being such a caring doctor.
Wednesday, October 27, 2010
God has his angels minister to us, but they are sent to obey his direction. Not that we aren't sent to obey, but our will gets involved in it, too. So though I have called people God has put in our lives 'angels', these are people who have given of their humanity, their hearts, their time, their resources. So many have helped us in so many ways from back home and are our loved ones, special in our lives before this and always will be.
There are also some wonderful people I want to tell you about from here in Houston...
Stacie -- she is a palliative care person here at St. Luke's Epsicopal Hospital. She was one of the first people to sit with me while I heard some very hard news from the doctors. After the doctors left, she stayed with me. She asked my who Allen is. She wanted to know what kind of man, father and husband he is. She asked us about our lives and loved ones. What a caring person she is. She visited us nearly every day and was with me when I was having to consider hospice care for Allen. She was with us as we saw Allen starting to respond and even though the doctors didn't hold out hope or even think his responses were purposeful, but just physical reflexes, she stood with us, hoping with us. She didn't 'side' with us. She stood with us. Her hand, her shoulder, her kindness has been a blessing. As Allen has progressed she has been here to interpret the doctors' orders for us so we can understand. Lord, bless Stacie, her husband and children and give them all they have need of and multiply back to her for all she has given to me and all the people she ministers to.
Palliative care (pronounced pal-lee-uh-tiv) is the medical specialty focused on improving overall quality of life for patients and families facing serious illness. Emphasis is placed on intensive communication, pain and symptom management, and coordination of care.
Palliative care is provided by a team of professionals working together with the primary doctor. It is appropriate at any point in a serious illness and can be provided at the same time as treatment that is meant to cure.
Tuesday, October 26, 2010
I mostly have a lot of peace while we wait and trust. The doctors are all hopeful now, which helps. Allen still runs a temp and they still put him on those cooling blankets which make him shiver. I hate that, but I hated putting baby Jamie in a cold bath when she was tiny and running a fever, too. It was hard leaving him last night because of it. But today, though he's still at 99.3, he's not on the cooling blanket. The doctors are still doing cultures to make absolutely sure of no infection before they do a shunt for the 'brain drain', hopefully on Friday.
When Jamie and I got here this morning, the doctors have been pleased with his CPAP all day and vent at night, so this morning they took him off CPAP and he's on just oxygen on his trach... all on his own now, 'cept for the extra O2. So far so good. They are drawing the blood now to check for CO2 levels. I'm praying he is breathing well enough for that. The sooner he's off of it the sooner the trach can come out. He mouths things to me a lot and sometimes I can read his lips and sometimes I can't. It's frustrating, but I'm just glad he's trying.
He's laying near me and looking around, then gets tired and rests. We opened up the blinds on the recommendation of this great lady, Stacie, who is with pallative care. Patients get disoriented with days and nights and it should help when he sees the outdoors light, I hope. While I was checking email and facebook, Jamie was reading one of Allen's Sci-Fi books to him. He loves re-reading books. He really gets his money out of a book. We tease him about being an archivist because you can hardly tell they've been used. He barely opens them so as not to break the spine and never, never, never folds back the pages or folds corners or anything. Me... I fold pages, lay them on their faces open... hey, it's my book! Now, I don't do that to anyone else's book, so no worries if you lend them to me. I know how to be an archivist! LOL
The people here at St. Luke's, nearly all of them, have been incredible. Some nurses are more friendly and positive than others, but I haven't met one who didn't give their all taking care of him.
Allen's mom and brothers had to leave yesterday. It was SO hard on her. She cried and cried that she didn't want to leave him like this. I told her that he is SO much better now. We still hope and pray he'll be home in a week or so.
Thank you so much for your prayers and messages and everything you are doing for us. I hurt for Tammy Jo and Mark and keep them in prayers, as well. We want God to take care of the clots well and quickly. Also, my brother is home and doing well after the triple bypass.
So... now it's Jamie, Erin, Christy, Peter, Betsy and I this week. Jamie and I are able to stay up her the most. Erin comes often and then helps with Betsy a lot, too. Christy comes all she can and Peter keeps us going to and from and tries to keep us distracted with other things so we don't get worn out with just sitting at the hospital. My hard time is this is the only place I want to be.
Keep praying as we trust and wait. Know that God keeps hearing your prayers and healing and helping. Lord bless you all...
Saturday, October 23, 2010
He reigns from heaven above
With wisdom, power and love
Our God is an awesome God.
Jesus, Jesus, you're the glorious one
Jesus, Jesus, God's risen son.
Jesus, Jesus, Forever we'll sing.
Jesus, Jesus, We'll hail you as king.
Let all the saintly ones in God rejoice
The battle is won so lift up your voice.
Declare his name, the Glorious King.
Lift up the standard of triumph and sing !
Allen is mouthing a lot of words, lifting and moving his arms and hands, turning his head, responding to dumb jokes... being Allen. He recognizes us all, it seems. He made his hello to his mom cutesy mouth thing (can't describe). The doctors think they will put in the shunt for drainage early next week and we should get him to the Valley, Lord willing, by the end of the week. He still needs to wean off the vent, but he can do that in the Valley, if necessary. If I can beg more prayer from you (you've all been so wonderful to seek and beseech God on Allen's behalf)... please...
- Pray that the Lord will continue to improve Allen, strengthen him and cause his 'brain drain' as Erin calls it to work on its own.
- Pray that whatever is causing the low grade fever will be taken care of.
- Pray that his lungs and strength will allow him to come of the vent pretty quickly.
- Pray that we'll find the right LTAC (long term acute care facility) or rehab facility if he's off vents that will help him to improve.
We still wait... but I am enjoying all of Allen's attentions.
Thursday, October 21, 2010
Bro. Ron Corzine shared this in his newsletter:1 Peter 1 says this in verse 7 “The purpose of these troubles [that you’re going through] is to test your faith as fire tests how genuine gold is. Your faith is much more precious than gold, and by passing the test, it gives praise, glory, and honor to God.” So God says it’s inevitable, but I can use it all for good and I can even fit your plans and your errors and your mistakes and other people’s sins into this. And I’m going to test your faith and strengthen you through it.
So what should be my attitude? Praising God. Praising God in the situation saying, blessed be the name of the Lord. That’s what Job said when he lost everything. He lost all of his wealth and all of his health and all of his family in about twenty-four, forty-eight hours. Yet he said “The Lord gives; the Lord takes away, but blessed be the name of the Lord.” I’m going to trust him even in the situation.
Wednesday, October 20, 2010
First, I'm sorry for not getting updates out to everyone who has asked. I've been living on a true roller coaster. You know most all of my years with Allen have been stable and steady and I can always count on him to keep my life balanced and simple. I love that. Well...
We finally came to a point where the doctors have made it clear that they don't know what else to do to bring Allen around or help him recover and even if he does recover they don't know if he will be able to live off of ventilators and lifeline tubes. So... Allen doesn't want that. He made that known to me many years ago. So, he wasn't responding and they said the eeg only showed a sedated-like brain wave with no response to stimulus.
Well, he kind of squeezed my hand some during this time, but the doctors assured us it's just reflex movements. So we started talking about hospice and taking he somewhere to be comfortable and either God will raise him up or take him home.
Tuesday he responded much more as those of you on facebook saw with the little mini-video Jamie made of him moving his finger. He lifted his arm and put his hand on his stomach. He's moved his lips and lightly pursed his lips when i kissed him. This morning we talked to the doctor and he said he is very skeptical that this could be any more than reflex movements to stimulation. Of course, Allen doesn't respond to the doctors and so we look crazy. i don't care. I know what he did. But... he didn't do it this morning so... again, we settled on hospice care and are supposed to talk to the hospice people tomorrow morning (Thursday). Okay... by this time, I've cried my eyes out and dealt again with removing life support. It's not just a matter of life support because he has blood clots that need addressed and if they remove the drain tube from his head they think he will slip away. I can still choose to have filters put in to protect him from the clots and and they can put a shunt in to drain and keep the pressure off.
Just about the time I've settled down toward the end of this ride, hating the way it's ending but coming to terms with it....
Tonight Jamie, Erin and I were sitting with him. I KNOW he hears me. He was nodding and acting like he wants to talk, but the trach won't allow him to. Jamie asked him if he was comfortable and he did this shrug thing and turned his hand with his thumb up, like ...":eh, as ok as this gets". Such an Allen response, like the way he loves on us when we hold his hand by rubbing his thumb on ours. We were talking about how difficult this is and that I want to do the right thing and he pursed his lips clearly for a kiss. I asked him if he wanted a kiss and he did it again.
Now, some of you have read about Dr. Opie who is the intensivist. Well, I'm sure he's very bright, but he's a real cynic and not our favorite. It's okay. But... Dr. Duckworth who is Allen's surgeon had been out of town. He came in to check on Allen and after we talked he agrees that whatever improvements come may not be enough to get Allen off of ventilators and able to live on his own, but that I don't need to hurry on any decisions. He asked if we could get him to respond. This time Allen picked his leg up and wiggled his toes majorly. He made it clear to the doctor that he's 'there'. So the doctor increased his head drain to see if that makes any difference. When Dr. Duckworth left the room, Jamie and I said almost simoultaneously that we like that doctor and Allen nodded his head. We spent some time talking to Allen and told him we could take him out of there to the hospice house and wait or we could fight it out at the hospital and see what God will do there. I asked him specifically if he wants to stay in the hospital and work through this for a while. He nodded his head, 'yes'.
Another spin around the roller coaster... and we wait some more.
Don't get me wrong. I'm so happy he's responding and wants my kisses and loves on his girls. I'm hoping and God wants me to hope, but I'm not giddy. I'm trusting. I trust God with Allen's life and that he'll continue to show us what to do.
I still covet all of your prayers and thank you so much for all each of you are doing. The prayers, the calls, the texts, the emails, and the financial support has continually reminded me of God's love through his people. I've received cards here at the extended stay place and they have been encouraging and a blessing. My brother Charlie who just had heart bypass surgery is already up and walking and we believe for his complete recovery, too. Thank you for praying for him. My brother, Jimmy, and his wife, Gail, are with us now and have been such a blessing and hold us up, too. There are so many of you doing so much and I cannot thank you enough or even express how it makes me feel. All I can say is Lord bless you and pour back 100-fold into your lives.
With all our love,
Allen's family ... Allen, Linda, Jamie, Christy, Erin, Peter, and Betsy.
ps... Christy and family and Allen's mom and brothers are heading up here this weekend, as well as some other family members.. We are not alone. God is good.
Tuesday, October 19, 2010
Guess what? Even though the doctors didn't think he would respond any more... he has. My precious Allen has been rubbing his thumb against my hand, nodding or shaking when I asked him questions. He pulled his arm up, moved his fingers and even traced a circle with his index finger on the sheet. Very purposeful movements, which is what the doctors say is needed to call it improvement. Now... stubborn man that he is, he hasn't seemed to think it was important to do this for the nurses or doctors so they don't see it. Well, Jamie videotaped it and I showed it to the nurse!
But... we still need LOTS of prayer because ... now they have found several serious blood clots and if they were to break lose would be bad. He cannot take blood thinners, so we need to talk to the doctor to see what can be done. We need to know that he can still improve beyond this because Allen is still not able to breathe on his own and needs to continue the respond.
It always was in God's hands and it remains there. If God raises him up, I will praise the Lord and shout to the rooftops. If God takes him home, I will mourn, but I will praise the Lord. Now I realize it's easy for me to say that now that I've been given a glimpse of hope. This has been a rough journey and I know God is carrying us down that road. He pursed his lips when I kissed him. That was a wonderful blessing today. I needed that.
We wait. Please keep praying.
Sunday, October 17, 2010
This is Allen's favorite verse.
Some look at this and think that I am really strong to go through this. I'm not. I don't know why this is happening to us. Sometimes I just want to crawl in a hole or run away. I beg God. I cry and moan and can't figure out why God would call us to walk through this. Okay, God, if you don't raise Allen up , how can you get ANY glory from this?
I don't know. All I do know is I will hold on the same way we always have when what we thought was difficult came into our lives... where else will we go, Lord? You have the words of eternal life.
Basically, Allen is the same. Sometimes I'll think he hears and wants to respond. Sometimes I think he is sleeping in Jesus' arms and waiting. I just wish I knew. I'm still in 'wait' mode, but feel this looming responsibility that I'm going to have to decide his next step. They won't leave him in ICU. I hear a lot of thoughts from others, but ... I've got to hear what God is saying to me. Last night, I thought I knew what my next step would be. Now, I don't. I wait.
Saturday, October 16, 2010
The Lord brought my niece, Stacie, to stand with us today. What a blessing. God is so good to us. Not only do we know we are not alone with all the prayers, texts, emails, cards and all... but angels with skins on when people come to see us.
The doctors don't see any other changes in Allen, but they have taken him off antibiotics and now off the ventilator. He is breathing with just extra oxygen now.
Friday, October 15, 2010
I didn't get to spend much time with Allen today. We went earlier, but nurses were taking care of positioning, medicating, doing therapies, etc then the doctors wanted to meet with me again. I had to leave by 12:30 to catch the shuttle back to the room so we could have lunch and pick Jamie up from the airport. It is SO nice to have her here with us. We planned on resting a bit, having supper and going up to see Allen, but... our bodies didn't follow those plans. We all passed out so long that when we woke up we were all zombies. So though my heart wanted to be with him, my body told me rest. I fixed fish tacos and we rested. I am anxious for the morning, though. I want to sit with Allen.
So.. the visit with the doctors...
You know, I was irritated with Dr. "Opie" the other day, but today the Lord helped me see that he is compassionate and it's hard for him to stay removed enough to share medical information and facts. I couldn't do that. My heart wants to hold people who are hurting. So... I was brought to a 'counseling room' with Dr. "Opie" (who seems to be a really fine doctor), another resident with whom I've talked many times, Allen's nurse for the day and a Pallative Care worker named Stacie. I like her a lot. She is compassionate and friendly and we think we're kindred spirits. She has older and younger kids and loves morning coffee on the porch. She doesn't cut up fabric, but she cuts up paper and that's fiber, too, so it works.
They are out of ideas of what they can medically do for Allen to improve his situation. They want me to choose either Long Term Acute Care or comfort care (hospice). I wait.
Again, the Lord sent certain people into my path or to call me to share information with me I needed to hear. I was so totally opposed to removing feeding tubes, like I'd be starving Allen. I had to remember what I'd learned when my Momma was passing. There comes a time when food brings more discomfort than comfort, is less sustaining. I needed to remember that. Pray. His digestive system is not responding well.
My nephew (in-law and love) called and was able to explain some medical things to me that I needed to know. God has been so good. I'm so oblivious to some of that. With all my parents' hospital stays and Allen, I'm learning way more about medical stuff, all the numbers and tests and machine settings than I ever wanted to learn.
The stroke education coordinator here told me her story. She lost her husband to a brain aneurysm 15 years ago when their son was a toddler. It was taken out of her hands and he passed, but she shared with me that though they had discussed the same things about not sustaining life artificially with each other, she knew she could not rush into that decision with him. She had to know that what she was doing was right. Again, it was taken out of her hands. That's what I pray.... really that God will just raise Allen up. It's not too difficult.
AH, LORD GOD, YOU HAVE MADE THE HEAVENS AND THE EARTH BY YOUR GREAT POWER. AH, LORD GOD, YOU HAVE MADE THE HEAVENS AND THE EARTH BY YOUR OUTSTRETCHED ARM. NOTHING IS TOO DIFFICULT FOR THEE. NOTHING IS TOO DIFFICULT FOR THEE. GREAT AND MIGHTY GOD. GREAT IN COUNSEL AND MIGHTY IN DEED. NOTHING, NOTHING, ABSOLUTELY NOTHING. NOTHING IS TOO DIFFICULT FOR THEE!
All I've been able to hear from God is 'wait'. The doctor wants to talk again on Monday. So, I wait. Erin waits, Jamie waits, Christy waits... we all wait.
Thursday, October 14, 2010
My life is definitely on this coaster ride right now. God is sustaining me and most days are okay. I keep praying, singing, reading the word over Allen. Tuesday was a loop-de-loop day. The doctors called me in and wanted to not to the trach on Allen because they didn't think he was responding enough, don't think he will ever respond. They talked to me about making him comfortable, removing feed, fluid and intubation and waiting around a couple of days for him to die. I will honor Allen. His desire is not to live on tubes unable to respond or live and breathe and be happy. But I'm still not sure we're at that point. I cried and prayed and sought counsel. I was reminded of Allen's desires and I will honor him, but I do believe that God wants me to wait. Judy's son, Beau, said that yes, Allen doesn't want to live that way, but he's sure he would want me to come to a place where I can be at peace with it. I still believe our God is big and able to raise Allen up to wholeness. Will he? I hope so. I continue to hope and pray and believe. The concern was mentioned for whether I can be at peace if we come to that place. God is with me. God is for me, just as he is for Allen and Erin and Jamie and Christy and Betsy and Peter.... and you. So far along this 'ride' I have asked God to make decisions for me. I don't want to make the wrong choices. God has been faithful to do that. I still believe He will be faithful to do it.
That was Tuesday. I went to bed praying and reading God's word and Wednesday morning...
"weeping may endure for the night..." Did joy come in the morning? I had peace. God brought my cousin and his wife (Roy and Lillian). Lillian had a similar brain aneurysm and wrecked her car. While she was 'out' she said she knew she was with God... not dead or in heaven, but held like in a room filled with Him. It was peace and joy. She didn't want to leave that place. And when she started coming out she could hear and understand, but couldn't respond for a while. Hearing that brought me peace. A man from the Diehl's home church left me a note while I was out of the room. He'd prayed with Allen and left the note and some money. What a sweet blessing. Third, two sisters whose Mom was flown from McAllen with an aneurysm let me know that her mother was recovering and being moved to another room. She'd been 'out' for weeks and they'd been there 41 days. It hadn't looked good, but God is restoring her mom. She left a Billy Graham devotional with me that had been given to her. God is good.
So, today is Thursday. We're planning for Jamie to come be with us. We need each other here. Allen just had an EEG because they want to see if he's having any seizures. We're waiting...
but they that wait upon the Lord shall renew their strength. They shall mount up with wings as eagles. They shall run and not be weary. They shall walk and not faint... Teach me, Lord. Teach me, Lord, how to wait.
Please keep praying and believing with us. Pray for God to give us the strength we need for each day.... each moment really. Keep Christy and her family in prayer. It's hard for her to wait at home.
I love all the messages I receive. They encourage my heart.
Monday, October 11, 2010
The extended stay place we're staying has a free shuttle service to and from the medical centers in Houston. It's pretty amazing how many people they shuttle to and from all day long. This morning, Erin and I got on and chatted with some of the people who are also going to hospitals. Most are going to MD Anderson for... yep, cancer treatment. One man with his wife: she's lost her hair, very pale, feeling sick and bouncing down the road on that shuttle for more of the chemo that will make her feel worse. Another young man with his mom... same kind of story. An older gentleman with his wife. They've made this trek often before. A newbie... she's just arrived and will be going through all kinds of tests and paperwork to get her chemo treatment started. All the 'oldies' know the shuttle bus drivers and they are friendly and encouraging to the riders. Erin and I sit there, watching the skyscrapers as we pass, listening to the people share about the weather and what their loved ones are doing at home now that fall has arrived.... Santa Fe, Ohio, Arkansas, Tennesse... They come from all over to the city who promises help and possibly an extension to their physical lives. The chatter made me smile, but knowing the pain they were dealing with made me pray in the Spirit and ask the Lord to help them through this day.
Our stop. Erin and I get off and begin our tour through St. Luke's Espiscopal Hospital, over to the Purple Elevators, up to the 7th floor.... ICU, 7 South 5, bed 11. In to see my love, my dearest Allen. We sing some songs, pray for him, talk to him, love on him. The left side of his head and eye is still very swollen. He can't open it. His right eye opens and sometimes I feel like he is looking at me. Sometimes it's like he's not able to focus on anything. I know his spirit man knows we're there. So I'm still praying and singing and reading the Word over him. Erin and I sit ... on the cold side of the room...brrrr... and work puzzles, read books, talk to nurses, stroke coordinators... other patients...
I met two sisters whose mother was airflighted from McAllen.... Josephina... Lord, touch and heal her, too. She had a similar aneurysnm, but they've been there... waiting, taking turns staying with her for 37 days! Lord... keep giving me courage.
We hadn't made it to the grocery store, so no packed lunches yet... back down to the cafeteria. Meatballs, rice and sweet potatoes, with a cookie. Times 2 is almost 20 bucks.... that can't go on every day. After lunch Erin I take the yellow elevator up to the top... 26th floor... nothing exciting... nuclear medicine. So a sign says the "Terrace" is on the 23rd floor... so down we go... No terrace, just the highbrow part of the hospital and fancier rooms... back to the 7th floor. I miss Allen already. I sign the consent for Allen's traecheostomy. Tomorrow at noon.
We sit and 'visit' with Allen and Erin loves on her Daddy until about 5 when we head back down to wait for the shuttle bus again. People get on to go home, stop at Luby's, go to Target... we come back to our home away from home.
Time for groceries. We spend a couple of long hours at Target's grocery and stock up on a lot of easy to cook foods... chicken tenders, pasta, frozen vegies, lunchmeat, baking mix, milk, eggs, etc... plus some containers, a mixing bowl, toiletries and 3 kinds of card games to make the days pass by. By the time we get back and unload we're too tired to cook anyway... so hot dogs, crackers and a breakfast muffin. Good enough. Tomorrow we'll cook.
Lord, I need to hear Allen's voice. I ache for it. I need to see the clear recognition in his eyes. I want him to be still. I continue to tell him that You're continuing to heal and protect him and that You're providing all we have need of. I actually can't think of much we need but YOU and each other. Yes, when I start thinking about finances, about his inabliity to work, his disability pay that is basically less than minimum wage... I have to choose to let it go, to continue to trust the Lord. We are okay. Bills are getting paid and the Lord has been good to us. He's never forsaken us and I don't imagine it will start now. But... yes, the old devil would like me to focus on those things.
God is building courage into me that I never thought I'd have. But... it's HIS courage. It's something that is supernatural. It's not what's me... It's what is HIM in me.
I ramble... it will probably be this way every day that I blog. It's midnight and time to sleep.
Sunday, October 10, 2010
It's me... I'm still in Houston and will be a month or so. We are
waiting on God's miracle. Please keep praying. It's a tiny bit of
encouragement one day and stable the next. They opened a spot on his
skull and clipped the aneurysm. One side of his head is extremely
swollen and one eye won't open. As the swelling goes down, we are
believing he will be able to respond more. His pupils aren't dilating
much, but today he started trying to move his eye to the side a bit.
I talked to him about the fact that the surgery was successful and
it's just waiting for the swelling to go down so he can improve, but
that God is providing for him and for us and all is okay. He hadn't
been moving his hands at all and he pushed his thumb against my hand.
Then I told him I might not be able to get back to the hospital
tonight and he pushed his thumb again. The Lord spoke through my
brother to me to 'keep your eyes open', so I'm doing that. He also
shook his head when I sang 'rise and shine' to him the other day. It
was rather funny. I told him I'd have to sing it every day and he
shook his head again. He moves his legs pretty well, but not so much
on command yet.
My brother and friend needed to leave and my girls came up for the
weekend. They left my car, some supplies and my Erin. I missed her.
We are staying in an extended stay place for a month or so and have a
kitchen and a comfortable space. They provided shuttles to St. Luke's
where Allen is at. They have nice parking garages with ridiculous
prices. $12 a day or more. That wouldn't work for long. The doctor
is good. They're taking good care of Allen. Dr. Suarez has
privileges at VBMC when Allen can return, but as much as I REALLY want
to be back home, he is better here for now, plus at VBMC ICU I can
only see him 1/2 hr visits up to 4X daily. Here we can be with him
all but 6-8 am and pm. The staff is good and are very attentive and
there is a dr around all the time. But with all that.... I miss my
family and friends so very much. I am very sure how much I need all
of you in my life. I treasure your messages and prayers and
encouragement. Forgive me if I don't respond very quickly. Some days
I have more time than others. Today Erin and I got moved into this
room after the other kids left and because of the Texas game we
weren't able to get shuttles in and out so we had to stay in the room.
We passed out around 5pm and slept til after 7pm. We ate a pimento
cheese sandwich and are watching "Marmaduke". Tomorrow we'll be back
at it, but it has been nice to take a breath.
Wives... LOVE your husbands. LOVE your families. I miss Allen's voice
and I'm waiting and praying and singing and trusting. I know that
this is possible due to God's grace and a lot of prayers. Thank you
and I love each of you so much. Please keep my girls in prayer, too.
Jamie and Christy wanted to stay here so badly, but of course cannot.
Jamie has school and Christy her family.
Love ya'll so much