Rough Night...Better Morning (Another Angie Post)

Monica had a very rough night. She was on heavy pain medication, so she was in and out of consciousness a lot. Dan describes it as haunting, and it's a good description.

Whenever she was awake she described the pain as excruciating. In the middle of the night, she began experiencing numbness in her right arm and leg and a burning sensation in her heels, along with a lot of pressure in her skull. Miserable is an understatement.

This morning, Dr. H came in and said the numbness was symptomatic of spinal fluid build-up, so he performed a lumbar puncture to relieve her pressure. He removed 26 cc's of fluid. The norm is 15. She is feeling much better now that the pressure has been relieved, but she is concerned it could build up again and that they may have to put a shunt in. Dr. H said that barometric pressure can also impact fluid build-up, and Monica is especially sensitive to changes in weather, so that may have been a factor in the pressure.

When I came in the room after Dr. H performed the puncture, he looked over at me and said, "She is such a brave woman." It's at that point I fell apart.

She is.

So very brave.

This morning in pre-dawn darkness I read these words to her:

"For the mountains may depart and the hills be removed,
but my steadfast love shall not depart from you,
and my covenant of peace shall not be removed."
says the LORD, who has compassion on you.
(Isaiah 54:10)

Our Almighty Father, Creator has given her breath, our Savior has brought her new life, and our Holy Spirit is ministering comfort to her. I can see her peacefulness in the midst of struggle. That is evidence of your prayers interceding for her. She is so grateful.

Dan is here now, and Monica is eating her breakfast and drinking coffee and seems more chipper than she did at all yesterday.  I love sitting here watching Dan and Monica interact. It is beautiful.

She is so loved.

Y'all are loving her well, too.

Would you continue to pray? She is desperately asking that this fluid build-up would not happen again. It is scary and overwhelming, but she is resting in the steadfast love of the Lord.

Thank you.

Strength for Today... A Post By Her Friend, Angie

Monica had supper delivered to her, and if one can be jealous of hospital food, I might have been a bit jealous of her chicken and rice. She chewed bravely even though it was so much work.

As I sat there and watched her, I couldn't help but think of one of her favorite quotes by Eleanor Roosevelt: "Do the thing you think you cannot do." She is so courageous, doing what she must even though it is hard and painful.

I have sat by her bedside for several hours now and watched her drift in and out of sleep, listened to monitors beep while the IV nonsense drives her crazy, and chatted a bit with her during her more alert moments. Always she tells of God's great faithfulness to her and her family. She tells of how Dr. Henderson has cared for her and quotes to me his prayer before surgery. She rejoices in her "floaties" in her vision disappearing. She whispers of Dan's care for her and of speaking with her girls earlier.

At one point, she laughed. "Did you ever imagine how many surgeries we'd have between the two of us?" It's almost comical. Then we talk of how we really must be kindred souls. But it is more than that. I'm convinced God knew we needed each other to fully understand all the weight each other bears.

She bears her trials well, and I marvel at her resilience. I am so blessed to sit by her side and learn from her even here where the walls seems to close in on you and the light is so harsh and fluorescent.

The stronger meds from surgery have worn off, and she is in a lot of pain today. She struggles to find a comfortable position, but she barely mentions it, only asks for help to sit up or gritting her teeth as she pushes the button to pump more medicine in.

Dan is staying at the hotel tonight to get some much needed rest. It makes me think of Jacob in the Bible, how he worked seven years for Rachel and yet it seemed a short time because his love was so great. They have such a long week ahead of them, and he will bear much of the weight of care. Only his love for her is so deep, I know it is a weight he is willing to bear for her.

She made some progress on her supper and received a visit from another patient here who has encouraged her that it does get better. The nurse came in and got Monica up, and her pain has gotten more intense,  so they've given her some valium, and she is resting comfortably now. I've read some Facebook messages and texts to her, and she is overwhelmed by all of your love and prayers and support.

We are curling up for the night, and it is quiet, or as quiet as a hospital can be with machines whirring and intercoms buzzing and loudspeakers blaring in the hallway. I am so very thankful to be here, to pray over her and ask God for strength for today and bright hope for tomorrow. And I am so very thankful to hear her speak of all of you... your prayers and support and encouragement are bolstering her spirit. 

Maryland, My Maryland...A Dan Post

Monica and I are comforted both in the doctor she has carefully selected and the fact that the surgery is in Maryland. Though the faces in this small hospital are unfamiliar, the surrounding environment is where I spent a few years attending the University of Maryland here at College Park and subsequent employment in the region. We met in nearby Sterling, VA, residing in the area and also rented a home in Gaithersburg, MD, where Danica was born. Though we prefer the more relaxed pace of Northeast Ohio, we still are connected to this area. I think it aids in recovery if one feels comfortable in their surroundings.

Monica is doing well post-op. This morning Dr. Henderson commented the surgery went perfect and seemed very pleased with her progress. She just finished breakfast and could still handle an Asiago bagel from Panera. With the C1/C2 fusion and decompression, the extreme pressure in her head and black "floaties" in her vision disappeared completely. The pain from harvesting a rib is very significant but she is thankful that this new pain is in a new place. Similar to Danica, she is wearing a Vista neck collar which covers the small incision in the back of her neck. She has a small but private room here in Lanham and the recovery wing seems to be mostly empty during this Thanksgiving holiday. Our short term goals are to get all these wires and tubes removed and get back to our hotel by Thursday.

There are key events in your life that help define who you are. Monica surviving multiple surgeries while still always thinking of her friends and family speaks volumes for her loving character. Finding myself alone at times in the waiting room last night made me realize how important our relationship is. Amy(sister in-law) and I were not getting any updates during the surgery and my mind began to wonder a little while reading the Steve Jobs biography. I realized that my wife and I are partners in this world and we are there for each other in good times and in bad times. Specifically, she needed me and depended on me to be there and if I ever questioned my role in life or where I was supposed to be, nothing cemented the fact that I was exactly where I was supposed to be. It was a good feeling.

Maryland seems to be the place where we happen to find ourselves during the most strenous times of our lives. I vividly recall sitting bedside next to my mom in a Southern Maryland hospital watching her one lung barely move due to cancer. This morning while Monica slept I sat bedside watching her lungs move up and down at long intervals due to her deep medically induced slumber. In Rockville we endured several months of unbearable pain during Monica's pregnancy with Danica. We do not think it mere coincidence these events transpired in our "hometown" of Maryland. We believe this is part of a plan to help us cope with our reality. Monica still has two rough days ahead of her as the pain begins to reveal itself but we are comforted in our surroundings and in our hearts. Our past experiences prepared us for this time of suffering. Monica's extremely loving and caring friends will carry us on their shoulders. "We can do all things through Christ who strengthens us."

Things planned long ago

"O Lord, you are my God;
I will exalt you and praise your name,
for in perfect faithfulness you have done marvelous things,
things planned long ago."  Isaiah 25:1

Tonight I am broken. I cannot breathe or move without the strength and grace of my God. The day seemed frantic and without the togetherness I had imagined but just for a few minutes tonight we sat in the dark as a family with the twinkling tree lights and Dan, who had not showed much emotion today but pushed through what needed to be done, went and got his ipod and played this song sung by Selah for us as a family. Then we listened to it again. " . . .You always give the healing and grace our hearts always hunger for . . .Here in our weakness you find us falling before Your throne  . . .You are the One that we praise.  You are the One we adore."

Each of us are feeling much different emotions but all have the same thread. Me, the momma bird, leaving my baby bird for the longest I ever have. I snuggled her in her little nest tonight and sniffed her hair and kissed her nose and the ache was more than any physical pain I could ever feel. I whispered in her ear, "I am you and you are me." Me, leaving my Laney who said matter of factly after I tucked her in and prayed with her and sobbed, "Mom, I'm used to this. It's my life." Me, looking into my husband's eyes and seeing how weary and frightened he is beneath the brave, strong and loving heart. We hugged. He told me he is making a commitment to me to be "up" even when he feels down because he knows I need that from him to get well.

The PERFECT faithfulness of God shown in marvelous ways this week reminds us who wrote this story. The next weeks and months are not blank pages. These things were all planned long ago. Even your love to us was decided much before He laid it on your heart to pray or give. Tonight we settle into the arms of a God who is ALL. We praise Him. We trust Him. Our hope does not disappoint.

(Thank you so much for praying for us all and especially for safety for our travel to Maryland and for my surgery Monday. I will be at the Doctors Community Hospital at 9am to get a PICC line, 11am I will go back for surgery prep and 1pm is the planned surgery start. He has the operating room scheduled until 6:40pm. Dan or my sister-in-law, Amy, will be updating here and on facebook as they can. I have a stack of thank yous here I desperately want to write and unanswered emails and messages and even un acknowledged great love. To each of you I say, your words and prayers and blessings are needed and appreciated and give comfort and encouragement. We love you.)

Nuts and bolts in layman's terms

I'm trying to keep my rollercoaster of emotions private and not open a floodgate of pain and fear.  I know many of you have been checking here waiting for a "nuts and bolts" explanation of my surgery happening Monday.  I often speak in neurosurgery lingo now.  This has been our world for so long.  It just all makes sense to us.  I understand it's mostly foreign to you.  If you have emailed or facebooked me I am sorry to not reply.  I have not had the strength to build my own "PR" campaign.  And by "PR" I mean prayer and public relations.  Smile.  So, please pray and ask someone else to pray too.  There are so many needs, and I am too broken and tired to say them out loud.  God knows, and He will be faithful. 

There are several other ladies who had or are having a similar surgery to mine with Dr. Henderson this week, and the explanation of one of their friends describing the condition and process was so good I am going to borrow from it.

I have been suffering for over a decade and have finally been diagnosed with Ehlers Danlos Syndrome, Chiari malformation, basilar invagination, cranio-cervical instability, a syrinx in my spinal cord and probable tethered spinal cord.  The past months I have struggled to get out of bed.  The pressure in my head due to low lying cerebellar tonsils has caused painful and debilitating neurological symptoms and increased wide spread pain. 

The surgery will be complex and and take about 4 hours.  The hope is it will help to slow or stop the progression of symptoms from some of these conditions and improve my quality of life overall.  I will have a suboccipital decompression, reduction of basilar invagination and cranio cervical fusion from the occiput to at least the c-2 using ribs which will be harvested from my back during the surgery. 

In layman terms, the lower portion of the base of the skull will be cut away and the outer tissue removed so the cerebellar tonsils (brain) will now have room. A titanium plate will be put over the skull to cover what what was removed. Then titanium rods will be placed one to the left and one to the right of the vertebrae from the occipital plate to at least the c-2. Rib bone will be removed from behind the shoulder blade and will be shaped to fit between the rods to fuse the area to vertebrae permanently to give stability in the neck to hold up the head. (The instability is caused by EDS.)

Yes, I will have the back of my head shaved.  Yes, I will have a long incision and scar on the back of my head and neck.  I will wear a more restrictive collar/brace coming out of surgery and then hopefully be downgraded to my Aspen after while.  Yes, having the ribs harvested will be one of the most painful parts of this surgery.  Yes, there are many risks and complications that can arise.  We have walked this road with our precious Danica.  Her light leads my way down this dark road.

Dan and I will leave for Maryland on Sunday morning.  We plan to stop in Hagerstown to get a hug from my sister Rochelle and her husband and have lunch.  Sunday evening we will settle into a hotel just a few miles from Doctors Community Hospital in Lanham, MD, where my surgery will take place the next day, Monday, November 21st.  Right now I am scheduled to be there at 11 am and for my surgery to begin at 1 pm.  Please pray for timing and circumstances to work towards this end.  I get very low blood sugar and cannot imagine not having anything at all to eat or drink from midnight until 1 pm the next day.  I know my anxiety will build and my strength will be all but gone by afternoon.   

We can speculate about recovery and time in Maryland before being cleared to come home, but we know these things are all fluid and so I am not holding expectations but leaving all that to God.  The soonest I would be allowed to travel is Tuesday, November 29th.  I will need to return to Maryland for a 6 week followup.

Please pray for us these next few days left together as a family.  Please pray for my Dan and Delaney and Danica and their individual fears about what is about to happen.  Please pray for my surgeon to have health and strength and some good rest over the weekend leading up to the surgery.  Please pray for my parents as my dad is still recovering from his lower spinal fusion and they will be responsible for the girls while we are away  Please pray for our financial needs.  We have paid a small part of the requested down payment thanks to donations from Grace Designs Photography's fundraiser in Septemeber, a donation from the dear parents of a childhood friend and my parent's help.  My sister-in-law who works for Marriott has gotten us a very good rate for our at least eight night stay in the hotel there.  I will most likely be released from the hospital on Thanksgiving Day or Friday and then stay in the hotel until I can see the surgeon again early the next week. 

Lastly,  Please pray for my physical suffering and most of all for my heart. 

I read this quote by John Bunyan last night.  It speaks to fusion and salvation.  It comforts me.  Believing that sometimes the deepest wounds create the sweetest healing bearing the most fruit. 

"Conversion is not the smooth, easy-going process some men seem to think.  It is wounding work, of course, this breaking of hearts, but without wounding, there is no saving . . . Where there is grafting there is a cutting, the scion must be let in with a wound; to stick it onto the outside or tie it on with a string would be of no use.  Heart must be set to heart and back to back, or there will be no sap from root to branch, and this I say, must be done by a wound." 

In layman's terms, this hurts in the deepest place something can, but it also has the hope of saving my life.  I'm all in.

Take heart, my friend

“You may not remember the time you let me go first.
Or the time you dropped back to tell me it wasn't that far to go.
Or the time you waited at the crossroads for me to catch up.
You may not remember any of those, but I do and this is what I have to say to you:

Today, no matter what it takes,
we ride home together.”   
Brian Andreas, Story People

My dear friend, Angie, wrote this about the burdens we are carrying on her blog yesterday. For my birthday she sent me a "mix tape" for suffering, something she knows more about than almost anyone I love. "Take heart my friend" sung by Fernando Ortega is the first track. Tonight she told me she planning to come visit me in the hospital next week.

We'll ride home together. No matter matter what.

Getting inside the miracle

Sometimes being a writer is painful.  Words are constantly writing themselves in your head and your heart, and there is no way to capture them all in their time and place.  Often when you come back and try to revisit they come out jumbled and wrong.  I have had a flood of important things to say, but I can't.  Quite simply, I cannot hold this old laptop on my lap.  It is burning my legs and shutting down every fifteen minutes because it overheats.  My fingers cannot hover long over the keyboard before they cramp and shooting pains move up my wrists and arms.  I grieve these lost words because they continue to tell a story.

Yesterday was supposed to be a really fun evening for our family.  We don't have those often, and I put more energy than I really had into preparing for it.  We have a tradition in our little family to put up our Christmas tree on Thanksgiving Day.  We play our Christmas playlist, and the kids lovingly unwrap each precious ornament, and we talk about where it came from and what year we first got it.  When we are all done "decking the halls" we sit together with just the twinkling lights, and we begin Advent readings and singing songs and the thrill of watching and waiting.  I will be in the hospital for Thanksgiving.  Dan and I will be in another state far away from our dear girls.  It was important for me to preserve this tradition.  Knowing I would not be able to participate when I get back we had chosen last night to celebrate. 

Snyder law says what can happen will happen.  I pushed myself all day to the point I could barely hold my head up.  Danica has been sick with fever and a strange rash the past few days and really wanted to crawl in bed, but her child excitement oozed as she peeked through the clear Rubbermaid at all the baubles.  Even Delaney who seems jaded and sad more and more as my surgery approaches had so much joy in participating.  Dan got home and the fiasco began.  Our prelit tree that is three years old decided to only light up in certain sections.  The minutes of trying to replace bulbs and fuses and everything under the sun unravelled into tears and sadness.  My tenacious husband, so tired from work all day and our nights awake with Danica sick, would not give up.  He eventually took Delaney to the Hardware for something called the "Zapper".  They came home so hopeful it work work, but no life could be breathed into the lights.  Danica passed out with disappointment and fatigue.  I collapsed into bed.  Delaney hid in her room with tears and my husband stayed out there trying and trying and trying. 

Fast forward a few hours and Danica begins throwing up in my bed.  I look to the heavens.  I don't ask "Why?" any more.  I wonder if this is really growth in faith or just resignation.  I do beg for Grace.  I ask for things to just get a little easier, if not for me, please Lord, for my family who is so tired and weak and ready for some normal, some peace and some joy. 

I cannot sleep, and I keep thinking about miracles.  I think about how flippant we are with the word and how blessed I am to know what it really means.  I touch Danica's hot forehead and watch her restless snoozing.  I think of all the times Jesus healed bodies to get to the hearts.  I try to pray and get close enough to touch the hem of His garment.

One of my beloved poets, Luci Shaw, writes about getting to the root of a miracle.  This morning I sneak out of bed to find her words.

No, he is too quick.  We never
catch him at it.  He is there
sooner than our thought or prayer. 
Searching backward, we cannot discover
how, or get inside the miracle.

Even if it were here and now
how would be describe the just-born trees
swimming into place at their green
creation, flowering upward in the air
with all their thin twigs qivering
in the gusts of grace?  Or the great
white whales fluking through crystalline seas like recently inflated
balloons?  Who could time the beat
of the man's heart as the womans comes close enough to fill
his newly hollow side?  Who will diagram
the gynecology of the Incarnation,
the trigonometry of Trinity?
Or chemically analyze wine from a well?
Or see inside joints as they loosen,
and whole limbs, and lives?  Will anyone
stand beside the moving stone? And plot
the bright trajectory of Ascension?
And explain the tongues of fire
telling both heat and light?

Enough.  Refrain.  Observe.
a finished work.  Think --
today: another miracle: the feathered
arrows of my faith may link
God's bow and target.

Miracles are always about the heart.  Once again I sit at the stable in Bethlehem.  I sit at the foot of the cross.  It is finished.  And so my feeble heart still cries about being forsaken and letting this cup pass, but I give my life and my family over to the sure thing God is doing. 

Team (Mo)nica

I have prayed about sharing the details of my own diagnoses and treatment with everyone in this forum.  There are all kinds of privacy regulations that rightly try to protect our personal medical information.  This blog flies in the face of the very good reasons behind those policies.  I have not shared our journey this far without considering the risks of being so vulnerable with my daughter's information, our family struggles emotionally, spiritually and financially and now my own life altering health issues.  When Danica's little head became crooked and months later was diagnosed with Chiari, a condition I had never even heard of before, it was the internet that connected me to research but most importantly people who had walked in similar places and were willing to help me fight for my daughter.  Since I began documenting here so many have googled "Chiari" or "Atlas Assimilation" and through the wonders of search engines and God's providence they have landed here.  If you have survived something like this you realize how unique each story is and how much it matters if only to the one next person who can be helped or given some hope. 

Many of you have written asking in almost disbelief about my surgery.  It is amazing to think I will be having a suboccipital brain decompression, reduction of basilar invagination and cranio cervical fusion in less than three weeks.  I wish I could explain all the diagnoses I received, but I cannot really.  I joke I could practically be a neurosurgeon at this point, but the truth is the combination of conditions I have is a messy melting pot spelling eventual disaster.  For some reason only known to God my symptoms have snowballed the past months into some very scary times.  Thankfully, I had all this knowledge from Danica's diagnoses and treatment and a lot of gut instinct and my friend, Pam, a woman who has a road right next to mine who kept whispering to me to find help. 

The emotions of our family now and the raw reality of what we are racing into is for another time and post.  I have not fully let myself go there quite yet, because I am laying here in bed with calendars and paperwork and lists and trying to take care of details that no one else can or would even know to.  In the back of my mind I worry I don't have advance directives and a living will and wonder how anyone would know what song I want at my funeral if I don't tell them. 

As I type this my shoulder pops in and out of joint.  I feel so much pressure from the back of my skull into my head I want it to explode just to stop the pain for a minute.  If I move my neck the bones literally make a crunching sound.  This is all stemming from Ehlers-Danlos Syndrome, a genetic connective tissue disorder.  For over ten years I have been told I had severe fibromyalgia.  In my heart I always knew something else was wrong.  It was not just widespread pain in flares.  It was like my body was imploding some days.  I would tell Dan over and over, "There is something REALLY wrong with me."   EDS relates to almost all my other issues because our connective tissue holds EVERYTHING in place.  When it's loosey goosey things get dicey especially around your brain and spinal cord. 

This is a picture of my cervical spine in a lateral position.  Looks pretty good right?  The C1 is covering the C2 55mm.

Now I'm going to show you my cervical spine when rotated to the side.  YIKES.  In the most extreme turn my C2 is only covered 13mm.  You can imagine what is happening to my brainstem any time I move my neck.

I do not plan to post my MRIs here, but needless to say, there are quite a few neurological results up and down my spine because of the compression of my brain stem and spinal cord.  I have a syrinx in my lumbar spine.  I also have imaging, symptoms and other tests that confirm I have a tethered spinal cord.  Surgery for this would be next spring sometime once I heal and can access how many symptoms remain after fixing this critical issue.  I also have Chiari in certain positions and will have my brain decompressed.  Because my skull and cervical bones are moving around in flexion and extension and rotation an entirely new picture of my cerebellar tonsils, brain stem and spinal cord emerge.  These are scans that most neurosurgeons would never order but paint the real picture.  People have also been asking why I need to go to a surgeon in Maryland.  There are really only a few surgeons in the United States that will agree to decompress and fuse EDS patients.  God most decidedly led me to Dr. Henderson.  He does not participate with insurance.  Thankfully the hospital is considered out of state, in network, so many of the services required will be covered.  The most expensive part of the surgery, the surgeon, will not.  He is asking for a large down payment to perform the surgery and an agreement for monthly payments.  We are moving forward.  God will make a way. 

Dan recycled the Team Danica shirt my friend, Kim, had made last summer to get a little laugh out of me.  Thank you for sticking with us and praying to the God who is able to do exceeding, abundantly above all we could ask or think.