Monday, August 31, 2009

Update on John

Well we arose at 4 a.m. and left Iron Ridge by 4:30 a.m. Once we arrived at St. Luke's all started moving very quickly. The angiogram was completed without any complications. The doctor met with us to report that it was just as he suspected: the cavernoma was nothing to worry about. The MRI from Friday, however, revealed that John's Chiari Malformation was causing a backup of fluid in his spinal cord. After recovering from the angiogram, we headed up to Dr. Ahuja's office and waited FOREVER to see him. Basically, John needs to have the surgery. Many people with Chiari Malformation need no treatment at all, but the rapid onset of symptoms John has had coupled with the fact that his symptoms are not resolving themselves, indicates to Dr. Ahuja that John needs the decompression surgery..... sooner rather than later. We are pretty sure that he will have surgery next week Wednesday. John is going for a second opinion this Thursday; however, it seems pretty clear that he will hear the same diagnosis.

SOOOOOO! Rally the troops! We need your help! Of course and OBVIOUSLY your continued prayer support is VITAL to us. We need guidance and wisdom for the surgeon and all medical professionals who are on John's case. We need peace and calm for our entire family. One of our big concerns is finances how will we pay the bills with John out of work; however, today we really came to grips with the fact that we have to in faith rely upon God for that . Once we came to grips with that, we realized that we both have other underlying concerns: this is BIG surgery, what if something happens? John is NOT good at taking it easy, how will he rest enough to recover? Plain and simple, gut-wrenchingly honest, we are both VERY scared. So please continue to pray.

Some practical ways in which we could use some help:

1. We are having an impromptu prayer meeting/chili dinner on Saturday night. We wish we were inviting y'all to come see our new abode under better terms; however, life doesn't always work out the way we wish. We would like to invite anyone who'd like to come pray over John with us. Since it is such a long way for most of you to drive, I will be making a HUGE pot of chili to feed peops, and we'll have a bonfire as well. If you'd like to come, please let me know via blog comment/text/voicemail/e-mail so I know how many people to expect. Arrive about 5 p.m. We'll pray for John after we eat and before we start a fire. Also our address is:
W2548 Nevada Heights Rd
Iron Ridge, WI 53035

2. The kiddos... if surgery is next week Wednesday, we could really use some help with the kiddos. I already have Friday covered. But I need helpers with Wednesday and Thursday. If you would like to have the Kastner children at all, let us know (don't be afraid, they really aren't their normal blogable selves for anyone other than their mother).

Sunday, August 30, 2009

This day is a blessing....

Today I read an old blog my sister wrote. Just as I have in the past, she tapped in to the great wisdom available to us all via the lyrics sung by the one and only Hannah Montana: Life’s what you make it so let’s make it rock! I also received a text from a dear friend about how she has been studying about having “intoxicating joy.” She was ministering to me if intoxicating joy rules our life, then no specific circumstances will matter.

Again I don’t claim to be the brightest bulb in the batch; however, I did not just fall off the turnip truck either. I started to see that God has a message for me today. I recalled how last week another friend ministered to me through the lyrics of my FAVORITE band Superchick:

Waking up to another dark morning
People are mourning
The weather in life outside is storming
But what would it take for the clouds to break
For us to realize each day is a gift somehow, someway?
So get our heads up out of the darkness
And spark this new mindset and start to live life cuz it ain't gone yet
And tragedy is a reminder to take off the blinders
And wake up and live the life we're supposed to take up
Moving forward with all our heads up cuz life is worth living

We live we love
We forgive and never give up
Cuz the days we are given are gifts from above
And today we remember to live and to love

God’s message to me was clear: live this day! Don’t worry about tomorrow! Don’t wish away this pain! This day is the only day you have been given, and THIS day is GOOD! This day is something to be grateful for. This day is a blessing from God.

I awoke this morning to breakfast in bed, cooked by my amazing husband who had the night before collapsed into bed in grave pain but had awoken this morning determined to push on through his pain and take advantage of this day he had been given. We spent the day with just Noah home, doing chores, spending time together, praying, crying, sharing, and loving. (Okay fine! We did a tiny bit of fighting too!) But this day was a BLESSING! In and of itself, whether there are any more days to share or not, this day was a BLESSING! We are all still a family. We have a roof over our heads. We have food to eat. We have a car to drive. We have jobs. But even if a day comes in the future where we have NONE of that, we have our salvation, and no one and nothing can take THAT away.

Closing tonight with words from I Peter 1…

Praise be to the God and Father of our Lord Jesus Christ! In His great mercy He has given us new birth into a living hope through the resurrection of Jesus Christ from the dead, and into an inheritance that can never perish, spoil or fade – kept in heaven for you, who through faith are shielded by God’s power until the coming of the salvation that is ready to be revealed in the last time. In this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that your faith – of greater worth than gold, which perishes even though refined by fire – may be proved genuine and may result in praise, glory and honor when Jesus Christ is revealed. (vs 3 – 7)

How to pray...

So many are praying for us. Thank you! Here are some specific ways you can be praying.

1. John had a MISERABLE weekend. Yesterday he was very weak and in excruciating pain. The have taken him off any pain meds that have aspirin in them (so he won't bleed out at the angiogram); the replacement pain meds do not do much for his headache AT ALL. So yesterday he was in a great deal of pain, and he was very weary from the pain combined with being weak on his right side. Today he is VERY discouraged about his health (it is a HUGE blow for him to be this weak and frail) and about our finances (he said today, "How am I supposed to relax and take it easy so I can get better when we have NO idea how we're going to pay the bills?").

2. Finances....already the pain is coming. John was out of work from his second job for 8 out of 10 days in the last pay period. Not sure where the money to pay the 1st of the month bills is going to come from. We ALREADY need a miracle.

3. Testing/appointments this week.... tomorrow is the angiogram. Pray that it goes without any complications. Thursday we meet with the neurosurgeon to determine if he needs surgery or not. Friday we meet with another neurosurgeon for a second opinion.

4. starting to show a bit of the stress of all of the trauma our family is experiencing. We have told him a little more about John's condition then we told the littler ones. Please pray that we have told him enough, but not too much.

5. God be glorified. All this pain... All this suffering.... my cry is that God will be glorified through this so that it will all be worthwhile.

Thank you for your continued support.

Saturday, August 29, 2009

Rock Bottom

Have you ever been at rock bottom? I mean the very bottom of the barrel the lowest point you ever thought you would be at? This summer I have been there several times. Only here’s the problem: each time I hit the bottom with a resounding thud and think, “Hmmmm…. This is a sucky place to be. But at least it can’t get any worse.” What I thought was rock bottom gives way, and I plummet down, down, down again to another depth…. Each one of these rock-bottom stops along the way feels like it is surely a depth at which I can never live, a fall from which I can never recover. Yet live I do.

The bottom fell out again two weeks ago. After all this summer has held, I really thought a deeper, darker valley could not exist. Yet it does. This time, however, is a little different. See I’m really not as dumb as I look, and I think I finally might have this figured out. After crashing hard against the bottom of this most recent trial, I have started to gingerly lift up my head and struggle to a seated position. But while I am lifting myself up and brushing off the dirt of the pain all around me, I realize that I no longer think, “This has to be as bad as it can get.” I full well know the reality is that this too could be a false bottom, and before I know it I could be careening on another death defying drop towards another heart-crushing stop.

I have been through more pain than I ever thought I could tolerate this summer. I have faced things that I never thought I could survive. I won’t say I came through victorious, but so far, I am at least still standing. It has been a very long time since I have blogged because I have not known how to be the “my life as a lesson,” “bare-naked honesty” Jami through this valley. I have not been able to share some of the struggles of the summer of 2009 so I instead chose silence.

The silence has ended and I have a few lessons to share from this life-changing summer:

1. No matter what you are going through, no matter how painful, no matter how hopeless and desperate things seem, GOD IS THERE WITH YOU. Life may pack a punch that leaves you face down on the ground. Human beings may hurt and betray you. Sickness may invade your body and leave you in pain and miserable. But no matter what, He is THERE. He will never let you down. Put your trust, your hope, your faith in Him, because HE alone is worthy.

2. There is ALWAYS something worse. I know a lot of the times it really doesn’t feel like there could be, but trust me there is! So no matter what the struggle or trial you are facing today, find some way to thank God that it is not worse. Because believe me, it really could be worse.

3. You will make it through this. You may not feel like it. You may not even want to. But you WILL make it through this if you trust in Him.

4. God is good ALL the time. In the face of what I have seen this summer, I will admit I have questioned this one. I have thought, “God how could you have let this happen?” and “God where were you when this happened?” He is GOOD. This world is evil, and there is a real live Devil who prowls around trying to destroy you, but He is GOOD. HE IS GOOD!

I guess I’m a little scared to even say, “I’m back.” My heart…. My life…. Everything is so raw right now that I do not want to share it, but yet I feel compelled to put it out there and risk the ridicule, the questions, the scorn in the hope that someone, somewhere will be encouraged. That somehow my life will be a lesson to at least one of you. So I guess this jumbled mess of a blog is back online. It will become, however, a messy hodgepog of (hopefully) inspiring blogs and medical updates on John. I am too exhausted and depleted to start up (and keep up) a separate blog for what’s going on with John’s health. Therefore, I’ll post updates on him here along with blogs as often as I can get what my heart is feeling into words.

Please pray....

As if the worries over the seriousness of John’s medical condition were not enough…. WOW! Please pray for us! I am trying hard to cling to hope but my grip is getting a little slippery.

Just found out that if John does have to have surgery, basically not only will he have to go 4 – 6 weeks without pay, but upon his return he will owe MU for the premiums he didn’t pay on his insurance. In addition to that as a part-time employee for his McD’s job he doesn’t have any sick time.

My head is spinning. I know that our God is big, but I just have way too much on my plate right now. Trying hard to remember:

For I know the plans I have for you declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future.
Jeremiah 29:11

We don’t find out for sure if he has to have the surgery until next Thursday. Plus after that we will most likely seek a second opinion. Please, please, please pray for us.

Thursday, August 27, 2009

Information from the Neurosurgeon

Well John has two things wrong with his brain (I know, I know you thought there were many more than that).

1. Cavernoma – he has a spot on the left side of his brain which the neurosurgeon suspects is a cavernoma. Apparently a cavernoma is a leaky blood vessel. The doctor does not believe this is what is causing his symptoms: right side weakness, headaches, vision problems, etc… However, this area must be looked at more closely to confirm the doctor’s suspicions that it is not the main culprit.
2. Chiari Malformation – John also has a Chiari Malformation at the base of his brain. Basically, his brain is sinking into the top of his spinal column and putting pressure onto his spinal cord. The doctor suspects this is what is causing the symptoms. The solution for this is brain surgery.

What is the gameplan? It’s gonna move pretty quickly. Apparently the quicker this is resolved the more likely that John’s right side weakness and other symptoms will be resolved and not be permanent.

1. Tomorrow he goes to Hartford Hospital for an MRI of his cervical spine.
2. Monday he goes to St. Luke’s (in Milwaukee) for an angiogram of his brain.
3. Thursday we go back to the neurosurgeon to see if brain surgery is the recommendation.

Prayer, prayer, prayer, prayer, prayer! We need PRAYER!

1. Wisdom for the doctors, nurses, technicians, etc…. to figure this out for sure and come up with the proper plan of action.
2. Complete and total healing. Whether through God’s miraculous intervention or through the healing hands of the doctor doing surgery….beggars can’t be choosers. We will take it however we can get it.
3. Practical matters: caring for the kids during all of this, paying the bills if John ends up out of work for surgery, short-term disability, FMLA, how much sick time does he have left, etc, etc, etc…

As far as the children go: Alex is in Afghanistan and will find out what he needs to know when he needs to know it. Amanda and Amber are adults and we are including them on everything we know. Noah, Jeremiah, Elijah and Hannah are way too young to process this. We will be telling them in bits and pieces on an as need basis. For example, Monday they will be with my sister Cori all day, and they will know that Daddy has to have a better picture taken of his brain. If any of you have chance to talk with any of them about this, we wanted to make sure you know what we are telling them.

We are exhausted, a bit overwhelmed, but completely secure in the verse that closes every e-mail I send: He knows the plans He has for us and they are plans to prosper us and not to harm us… plans to give us hope and a future. Thank you in advance for your prayers.

Sunday, August 23, 2009

Update on John

Out of respect for John’s privacy, this e-mail may leave some of you with unanswered questions. I will provide as many details as he is comfortable with and ask that you simply hold us TIGHT in your prayers.

The end of last week was a whirlwind of emotion….I frequently found myself thinking, “Seriously God? Seriously?” As if we have not been on enough of an emotional roller coaster laterly, throw in a little stroke and brain abnormality for good measure.

Here’s what I can tell you:

On Thursday, John had a TIA (Transiet Ischemic Attack) or a mini-stroke. We went to the Urgent Care and they called 911 and sent him to the ER in an ambulance. He spent the night and most of Friday admitted to Hartford Hospital and was release late Friday evening. He is doing better this weekend; however, there is obviously something going on in his body. He still has some obvious right side weakness, a persistent (and often excruciating) headache, and a few other troubling symptoms/side effects. Today at Wal-mart he fell to the ground because his leg simply gave out. The doctor has him on an aspirin regimen and high blood pressure medication. He explained to John that he is not sure if the stroke-like symptoms caused him to have ridiculously high blood pressure on Thursday or if the ridiculously high blood pressure caused the stroke-like symptoms. Regardless for the time being, lowering his blood pressure is a very good line of defense.

The MRI of John’s brain revealed an abnormality (we FULL WELL realize what an open door for wisecracks this statement is ). The doctor told us quite frankly, he has no idea what (if anything) this abnormality indicates. It is beyond his medical expertise. This is why John is going to see a neurosurgeon on Thursday.

Prayer, prayer, prayer, prayer… please COVER us in your prayers…
1. Please pray that the side effects of the medications along with the after-effects of the TIA (mini stroke) will subside and John’s strength and balance will return and his pain will subside.
2. I am doing the delicate dance of trying very hard to make a VERY independent man take it easy and rest in the face of how useless and restless these symptoms/side effects make him feel. After one day John is pretty much to the end of his patience with being ill; therefore, he is not interested in being restricted or giving in to my requests that he rest. Please pray that he will bend his will to reason and take it easy.
3. Please pray that he will continue to be upfront with me regarding the difficulties he is experiencing and that I will have the discernment to know which symptoms require a call/visit to the hospital.

I will admit to all of you that I am VERY scared about the recent turn of events in our lives. I pray every minute that the neurosurgeon will tell us this abnormality is nothing to worry about, that we simply need to get John’s blood pressure and cholesterol under control and all will be fine. I am RESTING in the FIRM knowledge that God always has us in His grip; however, I also recognize the reality that being His child does not mean an exemption from illness and even death. Please, please, please pray for us.

I pray frequently the words my Savior uttered before going to the cross, “Father, if you are willing, take this cup from me; yet not my will, but yours be done.” Luke 22:42
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