Tuesday, September 20, 2005

Update 9/19

Hello All—

I feel like I start every update like this, but I must say a lot has happened since the last time I wrote on Thursday.  For starters, Kari and I went on our first outing on Friday.  It was Kari’s first time in a car since the accident and it turned out to be not as big of a deal for her as she thought.  She was pretty worried about the anxiety and what her reaction would be to being in a motor vehicle, and she was surprised at how easy it was.  We went to a park at Bear Creek with about 15 other people and basically just hung out and had lunch.  There was a lot of space for Kari to practice driving, and she did okay—fine when she wasn’t in as much pain, but she couldn’t do much when she was.  She ended up sleeping through a lot of it, thought because she was on a very high level of pain medicine.  My Uncle Joe came out this weekend too, and it was nice to be able to get out a little with him and go to dinner—definitely a nice break!

The best news to report, though, is that as of this writing, Kari has now been off the ventilator continuously for over 87 hours (since 9:20 Friday morning) and they have removed the machine from her room completely as of Sunday.  It makes transfers and getting ready a lot easier not to have to deal with the portable vent and everything.  The other great part about it is that she wears her “talkie” all the time now and so I don’t have to read her lips anymore.  (Although I did become quite good at it.)  As Kari put it: “I feel human now.”

Even so, it has been hard for us to celebrate this milestone, as Kari’s pain is worsening and the last three days has been unbearable.  The pain medication (oxycodone) that they have been giving her has all but stopped working, and now it even fails to take the edge off the pain.  A few times when doing transfers, Kari’s pain was so high that she simply went into a state of panic—her hair wet from a mixture of sweat and tears.  When nurses come in to give medicine, they usually ask her what her “pain level” is, which is a number Kari gives them from 1, very slight pain, to 10 which is the worst possible pain imaginable.  For the last month her level has never been below 6, for the last few weeks never below 8, and for the last 3 days, never below 9.5—being 10 most of the time.  What her doctor has been saying is that the pain should lessen as she is able to get up and move more, but this week she’s done more of that than ever, and the pain has only gotten worse.  We both feel a bit like we’ve taken a few steps back as far as functionality is concerned (apart from breathing) because even if Kari grits it out through her therapies, all they really do is work on trying to control the pain through things like stretching and massage, both of which are very painful to her.  We are not trying to be ungrateful for her strides with breathing, but as Kari describes it, the pain just “takes over” everything else and is all she can think about.  Equally as frustrating is the fact that Kari cannot tell what position her body is in and often feels like things are pressing, pulling, twisting or being ripped away from her when in reality they are perfectly positioned.  She even feels a fair amount of pain in her legs and other parts of her body that she cannot feel any other sensation.  

To be honest with you, I don’t know “what the deal is,” with all this.  Many of the recent emails we’ve read have said that Kari and I have been an “inspiration.”  I’m thankful for the good that we’ve seen come out of this, but frankly I’m a little uncomfortable with that label.  I in no way want to be cynical or ungrateful about what many of you have written—like I said, I am thankful for the good effects that we’ve seen come of this; most thankful (and excited) when I hear people say that this has brought them closer to God.  I guess what I mean is that we don’t always feel that close to God and sometimes wonder if he hears what we say.  Apparently patience is virtue which I still must acquire.  Today we were sent a card which had many passages that contain God’s promises.  While reading them, we knew that they are still true for us, even though the reality in which we’re in doesn’t seem to agree.  Pray for endurance for us, and especially for Kari.  I know that answers for prayer often take both time and a shape different from what we request.  Also pray that God would reveal his presence; knowing how these things usually work, though, it’s actually a matter of us not being able to see him fully—pray that we’d figure out how to open our eyes.

Before I go, I want to thank anyone who’s reading this for keeping up with us.  If you know me well enough, you know that I “talk to think, and writing on the blog gives me a forum in which to sort out the traffic jam in my head.  I usually don’t know what I’m going to write when I start, and even from the beginning of writing this to now, I feel God helping me sort this out.  Right now I am being reminded of the great hymn “Open my eyes, Lord.”  Many of you have said that it helps you know how to pray.  I think it helps me too.

Aaron.


P.S.  Now that its 1:40, that makes it 88hrs and 20min off the vent (

17 comments:

Tara Giebelhausen said...

I couldn't imagine ever dealing with a pain so great as you are, Aaron. I will be praying for these things that you ask, as many others will too. Thank you for keeping us updated and thank you for being so honest with us. I am sending you all the prayers and blessings I possibly can. God Bless!

Anonymous said...

yes, the vent is gone, i'm so happy to hear that. you don't see it now, but later in years you will look back and see how strong you both have become, in your own relationship, and with God. I think of you both every day, i check for up dates every day. the pictures are wonderful, thank you for sharing them with everyone. God Bless. [ sarah's mom]

jan barrett said...

Daer Aaron,
Thank you for your trust in your readers as you share your innermost feelings and thoughts.
I am siting here trying to imagine the pain that Kari is experiencing and can only relate it to the pain of childbirth and post surgical pain in which I begged for morphine! You, too, Aaron are having pain in the watching of her suffering.
Gary and I were out in the camper this past week by Drummand Island and I was picturing you and Kari sharing the sunsets and gently lapping waters of the Great Lake Huron and Michigan. Truly, you two are rarely far from my mind as I go through the day. I wish that I knew Kari better than I do. Maybe someday I will have the privilege of spending some time with her.
You are in our prayers and thoughts as we pray for your continued courage and strength.
Love, Mom Barrett

Anonymous said...

Aaron,

Thinking and praying for you today. I'm glad to hear about the vent being off and frustrated about the pain; I'm sure you've heard about the success of Melissa's surgery - praise God! Blessings: grace and God's peace that passes understanding be yours today in Jesus' Name, my friend.

Nathan

Tonya Gigous said...

You both would still be an inspiration to us if you punched something or screamed every now and then. In fact, many of us would probably want to join you. To tell you the truth, I highly doubt I'm the only one who is 'mad as a hornet' for Kari's pain and are having difficulty reconciling this tragedy with the love of a God who loves Kari and whom she has faithfully served. When I read your posts I am sometimes physically ill over the fight my mind is having with my heart. My mind can't and won't 'get it' and often demands to know why. My heart aches for God to do what I believe He can do. So we wrestle. In the meantime, we're celebrating Kari's 90 plus hours off the vent, talking, riding in a car and your commitment to this journey that you didn't ask to go on. Together - all of us holding the two of you up to the only one who understands fully.

Anonymous said...

It's so wonderful Kari is off the vent, I do understand your pain & the inability to understand the the ever so often question "WHY"!! It seems in each healing situation things always seem to get worse before they get better! I truely am sorry for all the pain you both are going through! There is light at the end of the tunnel. Yes you don't want to be an inspiration through all of this I think it is more your true faith & closeness to God which inspires us all!! Yes it is hard to keep the faith, but you both show your faith daily. Yes it is hard to BELIEVE, & truely KNOW GOD is walking this journey with you both!! I truely understand your frustration. The old saying goes WHY ASK WHY, because its real hard to get the one true answer we as humans are looking for, but in time you will get the answer. God bless you both & just know it's okay to be frustrated & angry!!!

Anonymous said...

Hi Aaron, I was just reading your update, and have been exactly where you are at this moment. When my husband had cancer. Seeing him in pain, and not being able to make it better was the most difficult. One day he cried as I was leaving to go pick up the kids from school, he stated that he was so afraid. I did my best to reasure him that everything would be all right, and all the way home I prayed that I could be convinced that it would be. As I found a quiet moment that evening, I again prayed that God would help me to understand the path that our lives were now on. I then picked up my bible and it was randomly opened and the chapter that it was opened to was the book of Job. With much curiosity I began to read for the first time the trials that Job had faced. Well I'm sure you are familiar with this book. I knew at that moment if I kept my focus on the Lord he would get me through all that was ahead of me. I then shared with my husband and he read Job as well and through it all became a child of God.

God Bless you both,
Donna Legare
Gage Middle school

Diane Brodeen said...

Hi,Aaron&Kari:Thanks for the update.I'm thanking God and celebrating with you about being off the vent--that's a big step forward. So sorry to hear about the pain,and how discouraging that is. Praying for your comfort,and for the Lord to draw you both very close to Him and meet your every need.He won't leave you or forsake you, even if you feel that way sometimes. ---Diane B., Riverside

Anonymous said...

I pray for continued strength for you both, Aaron and Kari. Over 100 hours off the vent by now? Now THAT is strength! More power to ya Kari! Keep on truckin! I have been meaning to ask about the young girl that was a patient with you awhile back. Have you heard from her lately? Any update? Take care ya'all.

Charlie + said...

Dear Kari and Aaron,

Of course, the prayers continue. I am grateful I can get out to the web page now, and be more focused on prayers for you both, and all your families. I know you must feel very alone in the pain, and frustration. Both are so consuming. Still, giving vent to your frustration, as even Christ asked to be spared in the Garden, it is part of being human...

Love/Peace/Strength,

Charlie +

Anonymous said...

Aaron, I have to admit that my heart goes out to you and the struggles of being a support person. My husband has been struggling all year with neck issues. Basically we are waiting for the doctors to decide to do surgery to repair his disks. Meanwhile he remains in intense pain that pain medication does not even touch. I'm surprised that Kari hasn't said her pain is over a 10. It is very draining as a support person. Here is a scripture that was given to me that has been an extreme help on difficult days..."Be strong and courageous, Do not be terrified, Do not be discouraged, For the Lord your God will be with you where ever you go."

April

Heather V. said...

Aaron and Kari,
You both are showing extreme strength and faith even on the worst of days. It may be harder to "open your eyes" when you are so exhausted and fatigued. My prayer for you today is that God will give you peace so that you may rest physically and in Him. I pray that through resting you will be able to hear His still small voice whispering words of comfort to you.
This is my prayer for you today.
Love,
Heather

Tracie Eckhardt said...

Aaron & Kari,
I have been following all of your updates since Katie (Bost)Heuer sent me an email letting me know what had happened. I just wanted you both to know that you have been in my thoughts and prayers everynight since then. The strenghth, love and faith you both have shown is unbelievable, and definately an inspiration. Thank you for the updates, I will keep checking in and keep you both in my prayers.

Love,
Tracie (Dillingham)

Anonymous said...

Hey Guzhombre family,¿ Que Pasa ? We survived Back to School Night here at Gatorland last night. We figured that we could write to you two during our planning day. I proudly wore my green weloveyoukari.org bracelet while wearing my elk cowboy boots and tool tie last night. Claire Bear is now one of our own. She is doing 5 periods of AVID! We miss you checking your baseball stats during meetings, while being on task at the same time;.}. Eddie says blogging too. Great to hear that the vent is history! We will all pray that the pain can abate. It might be possible that a certain radio talk show host has tips for the effective use of those pain killers. Claire needs a nap as she was out till 4:00 A.M. last night. Linda now has 7, count them seven living in their house.Eddies daughter is getting bigger and bigger, she was here last night too. You missed out on the introductions in the auditorium.Aaron , Linda wants to know if you can put your hair in a ponytail and Claire says is it long enough to French Braid, or do you just have it in rasta braids.Should I have my students start making some ski/runners for Kari's chair as won't it be snowing soon. Anyhow I have been checking for your blog everyday and have Patsi checking it too. We miss both of you, and will be thing of you as the list just came out for the next leadership retreat. Dan and the Dept.

Anonymous said...

We have read about the "We Love You Kari" bracelets from several people now. How can we purchase these?

Anonymous said...

Praise God for the freedom from the vent! Satan is going to try to steal this victory by turning up the pain. I pray that you and Kari will feel God's strength permeate through your bodies and that Kari will be freed from the pain she is experiencing.

Thanks so much for sharing with us, Aaron!

Anonymous said...

I feel angry . . and frustrated . . . and helpless. How can this be happening to the two of you? I'm so angry. No way can I say I understand what you're going through - I've never been through the hell that is yours right now. I pray that soon God will let us all know what's going on.