Sorry It has been a couple of days. Not much happens at the hospital on the weekends. Clay has been receiving a medication called DHE through his IV. He received 9 doses of it over the past 2 and a half days. It is supposed to help break the migraine cycle. His headache has not dipped below a level 7 on the pain scale 0-10. Last night when we left it had ramped back up to a 9. Now they are alternating between giving him magnesium and depacon through his IV every 6 hours. He had received two treatments by the time we left last night. I haven't spoken with him this morning to see if he is feeling any better. He hasn't been sleeping well, so we found out through some other long time Diamond Headache Clinic-ers to ask for something called the triple shot. I don't know if he got that last night or not, but his doctor did change his sleeping medication, so hopefully he received more rest last night.
Today we start one of his long-term preventative medications Emsam. It is an MAOI in a patch form. Hopefully his skin and body will tolerate it. He will have to be careful about not eating foods with tyramine in them because it can cause a severe reaction with the medication. Please pray for his liver. The doctor told him yesterday morning that his liver enzymes were elevated. We don't know what it is from yet, so they are doing more tests. More than likely it is from a medication he is taking. This is not the first time his liver enzymes have been elevated. We corrected it last time with diet changes. Pray he makes good dietary choices!
Overall he is doing well. Time seems to crawl by in the hospital. There is a patient lounge we hang out in and do puzzles and talk with other patients. Clay's floor is dedicated to just headache patients. It is oddly comforting to meet other people who have gone through and are dealing with the same issues we are. You do not ask these patients whether or not they have headaches... you assume they do and ask what "level" they are at, meaning pain level. It breaks my heart and the Lord has lead me to be more diligent in prayer not only for Clay but for Jeff, Joy, Emily, and a little 14 year-old girl whose name I can not remember. We met Jeff the first day we were at the hospital. He is going on day 12. He is 10 years older than Clay, but they have a lot in common. He is a contractor and hasn't been able to work for 6 months just as Clay has not been able to. His situation is harder than ours in that he has 4 children, no insurance, and has more difficult headaches to control (Chronic Cluster Headaches). Please pray for him and his family. He is so nice and has been reaching out to Clay and us. He shared his deep dish Chicago pizza the first night with Clay since the hospital food is so yummy.
It has been therapeutic for me to be at the hospital and talk with some of these people to see how their families cope. For some patients this is their 2nd or 3rd time to be at the hospital. I am realizing that this whole experience is teaching Clay and I how we will manage his migraines. It might not get rid of them, but hopefully we can manage them better than they have been. It seems as if the doctors will send people home with maintenance plans and when those are not working the patient will come back to the hospital to get the migraine under control again, change the plan and then go home. So we might be looking at a long term relationship with Chicago. Perhaps we will have to purchase a second home! :) ha ha
Ok, I am off to take a taxi cab BY MYSELF to meet a good friend who was in our wedding, and I don't think I've seen her since then, so I am thankful for this opportunity. We are taking her son to wiggle worms, whatever that is. Oh how I wish my days were full of going to wiggle worms, changing diapers, and worrying about what to cook for dinner! Perhaps with this headache clinic all those things will be on the horizon! yikes
sarah

Hello From Chicago

My flight was cancelled on Wednesday night, so I flew in yesterday morning and met Clay's dad at the airport. Riding in taxi cabs is smelly and awkward, and also something to check off the "never have I ever" list.
His appointment went well. Thank you to those of you praying during it. We were there for a couple hours. Dr. Freitag is very nice, very smart, and will be seeing Clay everyday that we are here. We checked him into St. Joseph's hospital last night around 0630. The floor he is on is a dedicated floor for the Diamond Headache Clinic. So every other patient up there is a headache patient. I kept wanting to ask other patients if their head was hurting RIGHT NOW to see if anyone else up there was like Clay. I didn't because I figured that would be awkward and wouldn't really be helpful anyway.
The first order of business was to draw labs, have vital signs taken, and start an IV. After the nurse missed twice, it took all I had in me not to offer to start one myself. Not my place. :) Clay will be receiving IV meds to try and reduce the severity of his migraine now. Today there are all sorts of educational classes we are going to go to with him. He's going to see a GI specialist, and a specialist to do something for his neck pain. In a few days he'll start a medication that will be administered through a skin patch. It is absorbed better through the body in this form as opposed to taking it in pill form. Please pray that his skin will not be too sensitive for this drug. He has sensitive skin and as soon as the doctor said "you shouldn't have a problem unless you have super sensitive skin" I thought...poop. But maybe it will be ok.
Alright, that is all I know for now. I need to go fix my hair with my new super-style hair straightener; Merry Christmas Sarah. I think we are planning to rent a car...yipee...cause last night I truly almost vomited in one of the cabs because it smelled so bad. Lord have mercy!

sarah

Quick Update

In about an hour Clay and his mom are leaving for Chicago. We decided last night after watching the weather forecast that it would be better to play it on the safe side and have them fly out early. A winter storm is supposed to hit Chicago tonight, and we were worried that our flights tomorrow would be delayed or cancelled and thus prevent us from making it to our precious appointment! The appointment is Thrusday at 1:00. I will still fly out tomorrow. I am supposed to work again tonight but am first on the list to get called off if today is not a busy trauma day in Nashville. Pray that I do, so I can pack and get myself ready tonight. Please also pray for Clay. He is in alot of pain this morning and didn't sleep well last night. It seems the pain medicine and all of the medicine to stop the migraine is not doing the job well enough. Pray he can make it two more days until we see the doctor at the clinic. Please pray for wisdom insight and whatever your heart desires for Dr. Frytag (the doc we're going to see). His neurologist here says he is one of the top dudes at the clinic and has been there for 25 years (no, she did not actually say dudes...she is very professional). That makes me happy. I am nervous and a little bit scared. It is quite frustrating to have his pain meds not working the way I'd hoped. I started to feel anger toward God this morning and confessed that I feet like he thwarts every plan we've made and that it seems as if his hand is against us sometimes. I was quickly reminded by the Spirit of the verse somewhere in the Bible that states: "If God is for us, who can be against us." Please God be for us! Ok, I need to finish getting my husband ready to leave.
thank you for your prayers.
sarah

ps. If i had not proof-read this, it would have said twarts instead of thwarts. Twarts sounds funny in my head. I've definitely been awake too long. good night.

Me Again

Ok so I'm still awake, but I am in laying in bed (is it laying or lying?). I always read from a devotional before I go to sleep. I ABSOLUTELY love the devotional I have now, given to me from a good friend. It is "Jesus Calling: Enjoying Peace in His Presence" by Sarah Young. Today's seems so pertinent to mine and Clay's situation that I just have to share it. She writes as if Jesus is speaking...

"Bring me your weakness, and receive My Peace. Accept yourself and your circumstances just as they are, remembering that I am sovereign over everything. Do not wear yourself out with analyzing and planning. Instead, let thankfulness and trust be your guides through this day; they will keep you close to ME. As you live in the radiance of My Presence, My Peace shines upon you. You will cease to notice how weak or strong you feel, because you will be focusing on Me. The best way to get through this day is step by step with Me. Continue this intimate journey, trusting that the path you are following is headed for heaven." Numbers 6:24-26

I love it.

goodnight...or good-day for you who live in the sunshine. Hopefully I'll be back in your world soon. I got an email from work about maybe switching to the day shift. Yipee!

Windy City Here We Come

I have been up all night so this will be short, so I can get maximum sleep time before I go back to work tonight. We received the results from the test, and Clay does NOT have acromegaly. Yes I'm disappointed, but also glad to know that my husband does not have an endocine disorder because that would not be something to be wishful for. I think we were just hoping for a specific answer. So....we are back on the plan to go to Chicago on Wednesday. Please pray for Clay because I know he will be disappointed. He is asleep and doesn't know yet.
I have been receiving much encouragement from the word recently due to some people who have sent me some specific verses, so thank you to those people. The Lord has been very alive to me for the past 24 hours. 1 Peter has proved to be very comforting, so have many passages from Isaiah.
Clay has an appointment with his neurologist today at 1:00. I'll try and post before I go to work tonight to let ya'll know what she says regarding him not having acromegaly.

sarah

A day from H.E. double hockey sticks

Somedays you believe that life can not possibly get harder or more harrowing than it already is...and then it does. Somedays you believe you cannot possibly give more than you already have...and then you do. Somedays you believe that God cannot possibly let you sink any further into the pit of mire before he rescues you...and then he does. So what do you do when life gets harder? What do you do when feel you have nothing left to give? What do you believe when you feel like you are just a hand's reach too far away to hold onto God? You jump a little higher and grab on. You give the nothing you have because even that is something. You trust when God said "this too shall pass",that even THIS TOO SHALL PASS. You have hope. You trust that the God of the universe can bring good out of any situation, even your very own. You trust that God is there because He says He is even though you can't feel, see, hear, taste, smell, or even sense Him. You pray to God that he HEARS you, and that he hears your prayers even when they seem to float into the air, slam into the ceiling, and fall right back down on the floor into a puddle of prayer goo. Sometimes I'd like to get a little postcard in the mail that lets me know a prayer has been received into heaven even if there is no answer yet. It might perhaps say "Dear Sarah, We are currently receiving a high number of prayers. Yours requests have been made known to us. An angel will be sent out shortly to assess your situation. Thank you for continuing your patronage." You receive the postcard and you think "good, a little validation."

02.01.08 0715 am
Got off work. Walked to the Eskind Center at Vanderbilt to meet Clay for his definitive blood test to rule out acromegaly.

0830 am
Sat in a room while he drank orange glucola and had a series of blood drawn over 2 and a half hours.

0845 am
Called Dr. Brandes's (his neurologist) office to ask what to do. "My husband continues to be in severe pain with no relief, not sleeping, not doing well. Treatments and options are being pursued, but I NEED something to hold him over until we have a definitive plan. " Office Nurse: "Let me speak to the NP, and call you back".

0900 am
ring ring... Office Nurse: "NP says we do not have the IV drugs you might be needing." Me: "do I take him to the ER or do I need to find a different doctor?" Office Nurse: "don't know". Clay: in agony

1100 am
tried to speak with the endocrinologist at the office where the blood was being drawn. Dr. said that we needed to go to the neurologist for help with pain medicine. another dead end. Clay still in intense pain. I am livid, frustrated, and running on pure adrenaline and caffiene.

1130 am
Testing is over. No help yet for Clay. Phone call to his primary care physician. Spoke with the nurse, explained situation...husband in pain...cannot go on another minute without relief. Nurse Will speak to Dr. and call back. FORGET IT! Load Clay in oversized truck. Drive to Primary Care Doctor's office at Baptist. Dr. is a saint. Speaks to us and encourages us to go to Dr. Brandes's office, which is in Baptist Hospital.

1200 pm
Clay has to sit and eat something...feeling nauseated and in too much pain. Eat a quick lunch. Call Clay's mom. "We need you, come to Dr. Brandes's office." Sleep deprived, angry wife is about to take prisoners....need back up.
1230 pm
Arrive at office. Dr. Brandes is not in office, but has called. "Get Clay in." Wait to see the nurse practitioner. Feeling anxious and operating off no sleep. No sleep factor starting to kick in.
0130 pm
Ushered into a room. NP arrives. Apologies for earlier mix up and poor communication when we called at 0845.
0200 pm
Clay receives IV medication and is able to fall asleep. Sleeps in doctor's office for an hour. Prescriptions for medication to make it through the weekend are received until a follow up visit on Monday.
0330 pm
Clay is escorted from neurologists office in a wheelchair. Headache level has dropped from an excruciating 10 to a 7.
0400 pm
Drive back to Vanderbilt to fill prescriptions and call in sick for work, for which I am supposed to be at in 2 and a half hours. I am still wearing my same scrubs from the previous night. Trauma Unit nurses and management...awesome...very understanding.
The Lord is good.
0530 pm
Receive much needed and extremely difficult to obtain pain medications and other injections to take home and give Clay on a schedule to hopefully abort the migraine or at least continue to relieve intensity.
0545 pm
Arrive at home. Been gone for over 24 hours. Mission accomplished. I finally have pain mediction. I finally have something to give my husband to temporarily relieve his pain when he tells me it is so unbearable that he cannot take it anymore. I do not feel completely helpless anymore....at least for a few days until the narcotics wear off.
0600pm
Day from Hell officially over. Broke down and sobbed. Apparently I am indeed still human. Mom here to comfort. Praise God.
0730pm
Cadillac Margarita at La Paz with my mom. Thank God for moms.
02/02/2008 0130
woke up unsettled. Clay awake and needing pain medicine. tended to my husband. needed to blog. needed to read the Word and strengthen my weak soul with His everlasting strength and love.

We find out monday the results of Clay's test from earlier today, well yesterday now at this point. If the results are positive then we are looking at a possible surgery. If they are negative we pack for Chicago and fly out wednesday. "This too shall pass."

Amen Lord

Update

Hey, Clay here again, just wanted to give a little update on today's doctor visit. Overall it was a good visit, very nice doctor and he actually did his endocrinology fellowship underneath a long time family friend at Duke University. Our families have gone to church together since I was a wee little one. He's the same doctor who suggested getting this who pituitary thing looked into. Interesting how everything has played out up to this point. Anyways, this was basically a cursory/draw a bunch of blood exam. I'll go in early next morning for another blood test and then it will be a matter of getting all the lab results to see what they turn up. The one I'm going in in the morning for is basically the "have it or not" blood test that will determine if I do have the condition acromegaly. The MRI shows an enlarged pituitary, so if acgromegaly is diagnosed than the next step would be a closer inspection of the film and determining if there is any place on the gland that is the cause. If so surgery, which is routine and that would be that and the result would HOPEFULLY be complete relief, though even if I still have migraine for whatever other reason, than the treatment would still be likely to greatly decrease the intensity and frequently. Anyway, I'm not really worried/thinking about anything past lab results. Obviously my hope is that I have the condition, they do their thing and then it's all said and done, no more pain. Where I'm at mentally is that we're just waiting for more test results that will just rule out the next possible cause and have to continue a possibly never-ending search. Only time will tell and God's doing His thing and as was fleshed out in meeting with my pastor today, I don't like where I am, and I'm definitely not happy about it, but all I have is Christ to lean on. And there it is. So in short, keep praying and we should have all the lab results back on Monday. Now, it's off to watch the season premiere of Lost!