More Headache Procedures -- mass email update

Hello again family and friends!

It has been a while since I’ve been in touch with you and let you know how things are going.

The week following my last update, I had a bloodpatch procedure. After consulting with the CHAMP nurses over the phone, the neurologist called me directly and suggested that either I had a CSF Flow leak that was undetected or the Flow Study may have given me a leak. Dr. Eloff set up a the bloodpatch to be done the next day (Friday August 10). 
The procedure went well but did not resolve my overall headache. (The resident who performed the epidural bloodpatch stated that this type would only repair a leak if it was a result of the CSF Flow Study.)  
FYI, the bloodpatch involved an IV for fluids, a different site to remove 20mL of blood, and an epidural needle in my lower back to inject the withdrawn blood – it is supposed to form a type of scab around the spine and stop the leak... if there is one.

So now, as far as I know, all that can be done has now been done. 

I have followed up with my family doctor to discuss my medications and what else I could or should be doing: more bloodwork, other specialists, dietary changes, etc.   His opinion was to defer to the CHAMP neurologist’s expertise in this area, and he says there is nothing more to pursue from his office. My next scheduled appointment at the CHAMP office is in November.

I have been able to see some improvement in my headache. Through weekly massage, much rest, minimal activity, and regular medication, I am able to keep my headache to a 5/10! Praise the Lord! (If I increase activity, reduce rest and/or miss a dose, my headache quickly increases to a 7/10.) Thankfully, we were able to hire a wonderful twelve year old nanny (Emmie) to spend the work week with me and the girls at home for the remainder of August. 
September’s routine is still an unknown and we are discussing what kind of help we need, can find, and are able to afford. I am trying not to worry about tomorrow or next month, and am praying fervently for wisdom, direction, strength, and patience.

Thank you for your love and support and prayers! We have appreciated the many ways that God has touched us through the people upholding us: answered prayers, childcare, many homemade meals and desserts, cards and emails, hugs, and encouraging words. Thank you for ministering to me and my family through this difficult time.

Many Thanks -- mass email update

Hello again Family and Friend Family!

I have much to be thankful for this week.

1)      I came home to my family after a good visit with extended family.

2)      Grandpa is out of the hospital again – after multiple infections and complications. He is resting and adapting in the comfort of his own home, with the comfort of my parents’ proximity (upstairs).

3)      The CSF Flow Study procedure on Wednesday went well.  

    a)      Mom was able to come back into town to care for the girls, before returning home on Thursday.

    b)      The procedure was not as menacing as we originally anticipated. The freezing for the spinal tap injection was the most painful, although laying stick still for so long was arduous. For two hours I had to lay still as they took pictures every 15 minutes – I was very thankful for the mp3 book I had downloaded onto my iPod. Then, after a pee break, I had to lay still for 40 minutes for the 3D image that concluded in a CT scan.

    c)       Even the return visit Wednesday night to the ER at Foothills Hospital was a blessing...eventually. I was able to try a new medication (Sumatriptan) that seemed to help a little, and we got the verbal results of the Flow Study:

        i)        No leak

        ii)       No infection

    d)      We are able to check this off as done and no longer a concern.

4)      My massage therapist Kendra is able to reach parts of my headache – and possibly alleviate some of it... still adjusting to see what is the necessary pain to achieve the gain... I was blessed to be able to see her twice this week as I missed my appointment last week with my changing plans.

5)      We are enjoying a wonderful long weekend. We have not ventured from home, except when Alex ran out to the grocery store twice. Our girls were excited to have their bath in our outside turtle pool last night, and they delighted in our backyard picnic all day today – pool fun, hot dogs in the shade from a sheet, more pool fun, family nap in our beds, even more pool fun, freezies, hamburger dinner... We were able to have some special time without the stress of leaving home, as even a walk to the park is still a journey for me. It has been a splendid day.  

6)      Loving family and friends that are now family. Thank you for your prayers and support!

I am humbled to have so many big details to be thankful for, as there are innumerable small blessings that I need to remember to note.

Next on my headache journey? Keep on keepin’ on. I am waiting to hear back from the CHAMP nurses as to how to possibly work in the new medication, but their office won’t reopen until Tuesday). I will be making a follow-up appointment with my GP to go over the written results of the CSF Flow Study – and wait for my November follow-up with CHAMP.  I continue to keep my headache journal and life details so that information is at hand if and when needed. ... I will take advantage of the summer and hire one of two nanny teenagers that our girls love to help out on work days. Praying for and about September. ...

:)