Crutches, Books, and Cards

It's been two days since I got home from the hospital.  I've mainly only been doing 2 things: reading and sleeping. ;)  I'm also learning how to get accustomed to crutches again.  I can honestly say it's harder the second time around.  When I first started using crutches last year, it was new and exciting.  It's another story now.  Plus, it's more difficult because of the CRPS in my left hand.  I hope I don't have to be on these for long..  But, if so, I know God has a good purpose behind all this. :)

I've been able to read some great books since being home!

1. "Grace: A Child's Intimate Journey Through Cancer and Recovery" by Melinda Marchiano

Though I don't have cancer, I've been able to really relate with her journey and struggles!  Plus, she's a teen like me. :)  And, she was homeschooled!  Isn't that cool?

2."Implosion" by Joel C. Rosenberg

This is his latest non-fiction book, and I highly recommend it!

3. "I Come Quietly to Meet You" by Amy Carmichael

A friend gave me this when I was in the hospital. :)  Thank you so much, Holly! <3  I have been thoroughly enjoying it and am trying to read only one devotional a day to make it last.  That's hard, tho.' ;)

This past week, I received so many cards while I was in the hospital that I decided to paste them all on the wall next to my bed. :)  I'm so thankful for each one of you!  Your cards and loving words so encouraged me, and I will treasure each one of them!  Sorry it's kinda blurry, but here is the finished product:

In addition to all the cards, the two picture frames are from my siblings.  The big one to the left was for my spiritual birthday a while back (in honor of the day I became a Christian in 1998), and the right was from my older brother for when I graduated from high school last year. :)

Hope you enjoyed this post! :)

Happy Day

I'M HOME!!!! :)  It's so good to be back!  It's only been a week since I was last home, but it feels like I've been gone forever!  Coming home from the hospital, I'm now in more pain than when I first arrived there.  Very amused.  Haha! ;)  My right arm is purple and green all over from getting so many IVs and blood draws.  My latest IV infiltrated, so now I kinda have a lumpy and hard patch on my forearm.  Very weird to the touch..  I'm still dealing with that new headache on top of the old one, but I received one last IV drip of magnesium before I left, and I hope it lasts!  My left leg is super weak, and it's so different being back on crutches, especially in the house.

This is Brian and me. :)  Will always treasure this picture!

Since my symptoms are still unresolved, here's the plan: I see my pain dr. this coming Monday (10/1).  We'll discuss the possible removal of my spinal cord stimulator to get that MRI.  Can't wait to know what his thoughts are on that..  I start up physical therapy again (I've been off of it for more than a month!) on the 3rd.  And, on the 5th, I have a follow-up with my neurologist.  So next week will be quite busy!

And in the meantime, I'm gonna get some sleep.  In my own bed. :D  Without any phlebotomists waking me up at 6:30 in the morning.  Without nurses coming in my room at 7:30.  Without seeing doctors soon after that......... ;)

Good night!

7th night

Okay, hopefully tonight is my last night in the hospital.  7 nights and 8 days spent here is enough for me for now... ;)  I feel like it's been too long since I slept in my own sweet bed!  The reason I didn't go home today is because the genetics team hasn't seen me yet.  Been waiting all weekend.  But I think I'll be seeing them for sure tomorrow..  Also, my headaches still get bad if I don't receive IV magnesium and toradol, so we'll be discussing pain management tomorrow for when I get discharged.  Oh yes, my spinal tap results came back completely normal! :)  Thank you, God. What a relief that I don't have Multiple Sclerosis or Myasthenia Gravis!  But at the same time, this is kinda hard because this also means there still isn't an answer for all my symptoms. :(  And I've been waiting so long.  We'll see if the genetics doctors have any answers, and I'll also be discussing with my pain dr. whether I should end up getting my implant removed after all to have the MRI.  He's reluctant to do it, mainly cuz the stimulator is so helpful.  Please pray that the Lord will give me wisdom to know what to do.  It's been really hard deciding as you can imagine because it would be really terrible if I went through the whole explant surgery and MRI only to find out that the results are normal...

Goodnight, everyone!  Hopefully my next post will be typed at home... :)

5th night in the hospital

God has been so good to me the past week.  Every day in the hospital, I've seen evidence of His providence and mercy.  You want to know what made my day yesterday? :)  I found out that Brian, a medical student that has been seeing me everyday for his neurology rotation, loves the Lord! :)  Isn't that so cool?  It's a small world for sure because he goes to Solid Rock like my brother!  And, when we showed a pic of my bro, Brian told us he's met him a couple times!  He also teaches the same little kids' Sunday school as my brother (but a different Sunday)!  Haha! :D

He told me he's praying for me and that he prays for his "patients" every night!  Feeling so blessed by him!  Pictures to come soon once I get home. :)

So Thursday, I had that spinal tap!  And now I'm waiting for results..  Yesterday morning, I woke up with a new and very severe headache in a different area of my brain.  The doctors came to the conclusion that this isn't from the spinal tap, so this now adds to my mysterious case..  The inpatient pain service has been seeing me everyday because of all the pain, and I'm so thankful.  I got hooked up to a magnesium IV drip, and the doctor also has been giving me a daily dose of toradol through the IV.  It has helped immensely!

I was supposed to see the genetics team today, but for some reason, they never showed up..  So I don't know how much longer I'll be at the hospital.

Been praying for a young girl in a room close to me.  She has cystic fibrosis, and basically all day yesterday, she was throwing up continually. :(  I could hear her crying and weeping, and my heart goes out to her.  Could you please pray with me for her?

Staying in the hospital really brings one up close to all the suffering there is in the world.  My heart longs for the day when there will be no more pain and no more tears!  There will be no more genetic diseases like cystic fibrosis and Ehlers-Danlos Syndrome! :)

Longing for Heaven,

Kerissa

...and the adventure continues.

Just wanted to write a quick little update before I head off to bed!  For those of you who don't yet know, I'm back at the hospital because my left leg suddenly became weak on Sunday.  I now have to use crutches.  Add that to my drooping eye and headache!  All my doctors are saying I'm a pretty tricky and mysterious case. ;)  Today I had an EMG done to test the function of my muscles in my face, arm, and leg.  To say it was painful is an understatement.   They had to "shock" my muscles and stick needles into them!  It took about 2 1/2 hours!  Not kidding that it was pure torture.  I didn't get the actual results yet, but they are now thinking I don't have Myasthenia Gravis. :)  I'll probably know for sure tomorrow.  The doctors are now suspecting this to be central nervous system-related (brain and spine).  They're going to get my pain dr. on board with all this because I may have to get a spinal tap and/or my spinal cord stimulator explanted...  I'll keep all of you posted!  So glad I have my own room tonight.  Yesterday I had to share rooms with a lady who had a chronic wound infection!  And when I was trying to fall asleep that night, I assume she had nightmares because she yelled out loud and screamed and cried out and talked in her sleep all the way through the night!  A very startling experience.  Thankful I had my iPod on. ;)

Thankful for medical care :)

So exhausted.  Since Saturday morning, I've gotten like 1 hour of sleep!!  My pain dr. and spine surgeon's resident dr. on call told me I'd better go to the ER again yesterday.  I was in the ER for about 12 hours!!  Didn't get my own room till 3 am in the morning.  I ended up staying the night on the neurology floor at the hospital.  Never knew I'd have to get so many diagnostic tests in only one day!  And to my great surprise, I had to get 4 CT scans, 2 on Friday and 2 on Saturday....!! :(  I also had to get 2 chest x-rays....a urinalysis....3 neuro exams....2 IVs in my right arm....and, if I'm correct (I kinda lost count ;), 13 tubes of blood drawn!!  I think my right arm has just about had it!  I don't think it can take anymore trauma, and I was afraid the CRPS was gonna spread there!  As I read what I just typed, I see that the Lord sustained me through EVERYTHING. :)  I couldn't have made it through the weekend without Him!  The next few weeks are probably gonna be tough ones...  I see the orthopaedics spine surgeon tomorrow, my eye is still drooping, my headache's still there, and recently, my whole left side of my body has become weak and "lazy."  My neurologists are really hoping I don't have something called Myesthenia Gravis where basically my nervous system gets attacked. :(  That's bad.  And I have to wait about 2 weeks till I hear the results of this important blood test I had which will show whether I have MG or not!  Please please pray that this is not what's going on.  And I have to admit, I'm a little nervous and scared.  But I just have to remember that I'm in the Lord's hands.  This weekend has kinda been a blur, but I have to say, if all this didn't happen, I wouldn't have met such amazing people who cared for me in the hospital! :)  Plus, it was super fun seeing my pain dr. 2 days in a row!  In his own words, his second visit today in my room was kinda like a "social visit."  That made my day! :)

Thank you so much again for your prayers!  You are an encouragement to me! :)

A Visit to the ER

Well, friends, I had enough excitement for one day! ;)  This morning, I had to go to the ER at OHSU.  My drooping eye has been getting worse (it's been horrible), so my mom called my spine surgeon's office and spoke with a resident dr. on call.  He said that I'd better get checked out because any facial symptoms (like a drooping eye) usually mean something's going on in the brain.  My ER dr. was super nice! :)  He really wanted to do an MRI, but my mom called St. Jude Medical to ask if getting one is really contraindicated, and they said I can't get one.  If I did, my device would probably malfunction and I'd possibly get an electrical surge through my body from the leads..  So I ended up getting a brain CT scan and a cervical spine CT scan with the lowest amount of radiation possible.  The results show that I didn't have a stroke. :)  That's good news!  So this rules out one thing, and now I just have to wait till Monday when I see the spine surgeon..  I could have a Chiari Malformation in my brain which is common with EDS (but they don't show on CT scans), or the cervical spine instability is causing the drooping eye and headache..  My appointment can't come fast enough!  Thank you so much for your prayers. :)

One year ago today :)

Today is a special day.  One year ago, on September 13, 2011, I had my spinal cord stimulator implant surgery! :)  One of the best days of my life.  I'm so thankful to God that this neurostimulation has helped the CRPS pain in my feet all these past months.  It's been such a blessing!

This is my pain dr. and me. :)  I've known him for one and a half years now!  He's the best!  We've laughed together, joked together, and been through joyous times and tough times.  He has a real compassion for those in pain and tries to do all that he can to help others.  My case has been so crazy and challenging, but he has stuck with me all these months!

4 days till I see the spine surgeon! :)  You want to hear something funny?  Yesterday, I saw a physical medicine and rehabilitation dr.  With him was someone taking notes.  And guess what, that person told me he has EDS, too!!  That really surprised me, but it makes sense because he's short like me!  You're probably thinking, how does that make sense?  Well, I found out that people with EDS are short....no joke. ;)  Pretty interesting!  At least I now have a real reason as to why I'm the shortest in my family. :D

Never Forget...

another update

Hi, guys!

Here's a little update: I'm being referred to see an orthopaedic spine surgeon who has a good knowledge of EDS and CRPS.  Thankfully, I can see him this coming Monday.  My pain doctors aren't sure yet why I've been having a drooping eye and headache until I get some imaging studies done.  An MRI is contraindicated because I have an implant in my back, and my pain dr. doesn't really want to do a CT scan because of its high dose of radiation on a 19-year old.  So we'll be discussing this predicament with the orthopaedics dr. 

My pain dr. doesn't want to do anything for my hand yet until the head/neck problems are more under control.  And I can't have physical therapy at this moment because of the unknown..

I hope things move along quickly cuz this drooping eye is getting bothersome.. ;)

Kerissa

Today

Hey everyone!

I got an appointment with my pain dr. today at 2:15 pm! :)  Thank you, God.  Please pray that my dr. will have wisdom to know what to do.  I started experiencing some new symptoms this morning.  My left eye is kinda drooping... :\  A little nervous about that..

I will let you guys know what happens soon!

Kerissa

"Pain, pain, go away"

Thank you so much, everyone, for your prayers! :)  This past week was really hard.  Let's just say all that happened reminded me once again to fully depend on God and not on man.  I've had to turn to Christ because there was no one else to turn to!  Friends, when all is going "wrong" in your life, turn to the Lord for help.  He does not disappoint!

Last night, everyone went to bed really early, but once again, I couldn't fall asleep.  My hand was hurting, and the base of my skull felt horrible.  So, after trying to get to sleep for about 2 hours, I decided to head downstairs.  I turned on the lamp and read my Bible on our couch in the living room.  I'm going through the book of Job, so chapter 15 was next.  It was about Eliphaz accusing Job and saying that Job doesn't fear God.  Haha, now, that wasn't what I wanted to read for comfort, so I closed my Bible and asked God, "Show me what You want me to read."  The first thing my eye landed on when I opened the pages again was, "The Lord promises peace."  Isn't that awesome? :)  God is good!  It's like He wanted me to remember that in the night.

This is what I read: "Thus says the Lord who made the earth, the Lord who formed it to establish it---the Lord is his name: Call to me and I will answer you, and will tell you great and hidden things that you have not known." (Jeremiah 33:2-3)

I meditated on those two verses before trying to go back to bed.  And, you know what?  I was able to get to sleep that night! :)

This morning, we found out that my pain dr. is not in the clinic today. :(  Not sure why....he could be sick or maybe he teaches on Mondays since he's a professor, too, at the hospital..  Still don't feel good.  And I almost wanted to go to urgent care Friday night, but the dr. on call at the pain center said they would probably just admit me as a patient to the hospital and run some tests since clinics are closed on weekends.  Soo, I didn't want to do that yet..

I'll keep you posted!  Thank you again for your support on this journey!

Having the Blues

Feeling miserable right now, so please forgive me while I vent... ;)

1. My left arm/hand really hurts, and I still haven't heard back from my pain dr.  I have a feeling that he's probably swamped since he just got back from vacation..
2. I have had several canker sores in my mouth from the EDS so I have to stay away from citrus, vinegar, tomatoes, etc., which means I sometimes can't eat what my family eats for meals..
3. My neck, shoulders, and cervical spine are all feeling horrible from the cervical instability.
4. Yesterday, I started getting a severe headache at the base of my skull, and it's still not gone!  Waiting to hear back from my pain dr. about what to do for this..  I called my primary care doctor's office about this, and the nurse mainly told me to go the ED if things don't improve and to see what my pain dr. says.
5. In addition to all this, I'm either dealing with bad hay fever or am starting to fight something...I have a feeling it's allergies.  My eyes water and get dry, my throat itches, my nose runs, and I have some congestion.
6. I sent a message to my pain dr. on Monday.  I didn't hear from him.  So I called the pain center this morning, and the lady told me she'll send a message to him to let him know that I'm waiting for a response, and I still haven't heard from him which is so unusual cuz he always replies quickly!!

So now you can tell why I don't feel good.  Plus, I haven't been sleeping as well because of the CRPS pain and the headache.  They wake me up in the middle of the night!

If you think of it, please pray for me.  Your prayers would be greatly appreciated!  Hopefully my next post will be much happier.. ;)

X-ray Results

I received the full report of my spine x-rays on Friday, so here's the gist of it:

• There is a rudimentary disk space present at C4-C5.  Not sure what that means yet!
• I have anterolisthesis of C2 on C3 and C3 on C4 on flexion which then reduces on extension.  This basically means these vertebrae slip onto each other..  That's not normal.
• And lastly, I have a congenital C4-5 segmentation anomaly!  My C4-5 vertebrae are fused. haha ;)  Never knew that!  The doctors think I've had that since birth..

Right now, I'm still waiting to hear from my pain dr. about what's next regarding all this and the CRPS pain.  Not sure if he got back from his vacation yesterday or today..

This week, I'm supposed to get another blood test.  This time to check my thyroid function.  When my pain dr. used ultrasound for my latest stellate ganglion nerve block, he noticed my thyroid looks bigger.  So he's not sure if this is just from the probe he used or if I possibly have hypothyroidism..  I hope not!  I really don't want another problem added to "my list".. ;)

Please continue to keep Liam's family in your prayers.  I know they would be so grateful.  I can't imagine what they're going through right now.  What a day that will be when there's no more pain and suffering, no more sorrow, no more HLHS that Liam had, and no more CRPS and EDS!!  How amazing that day will be. :)

"And I heard a loud voice from the throne saying, 'Behold, the dwelling place of God is with man.  He will dwell with them, and they will be his people, and God himself will be with them as their God.  He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.'" -Revelation 21:3-4

In Heaven with Jesus

Liam has his wings and Heaven has a new angel, that bright shining star up above, Liam has changed us forever. Fly high baby boy - so many friends there waiting - until we see you again, Grandma Nanci said it best - we're shattered. Your support has been overwhelming and we read many of your postings to him so he knew how much he was loved. We still BeLiEvE in Miracles.  -latest posting on Liam's facebook page

There's a hole in my heart now.  I've been blessed to follow his story for many months, and everyday I would have another reason to look forward to a new day.  Just by seeing his smiling face encouraged me in my trial to keep being strong in the pain. 

Today I've cried tears of joy and of sadness.  Tears of joy because this little 18-month old baby boy doesn't have to suffer anymore.  His body will no longer be swollen from the HLHS.  He can learn how to walk and talk like other 18 month-olds, now that he has a new body in Heaven.  He doesn't have to be confined to a hospital bed any longer.  

Even tho' I don't get to see new pictures and moments of your life anymore, I'm so happy for you, baby Liam. :) You get to have lots of fun with Jesus!  And one day, I get to meet you!

 

 

Update on Liam

For all who are with us on this incredible journey, we cling to your love and prayers. According to doctors, Liam's time on Earth may be nearing a close. Liam is very tired of being confined to that bed and is ready to soar.....and you need wings to be able to do that. Please pray for comfort, peace, and divine wisdom. Whatever the Earthly outcome, we know that God is with him. Please pray for the miracle we call Liam. Roar and soar little cub! -from Liam's facebook page

Little Liam, you are an amazing fighter.  Even tho' I don't know you personally, I've followed your journey for so long now.  My heart is breaking, but we'll be so happy for you whether you stay here on earth or soar to heaven.  We love you.

Prayers for Liam

Hi everyone,

Could you please keep sweet Liam in your prayers?  He needs prayer badly.  He has hypoplastic left heart syndrome, and his story has been heard all across the nation.  His facebook page has over 60,000 "likes."

https://www.facebook.com/pages/I-Love-Liam-Lyon/137992366273067

His family loves Jesus, and they asked for prayer for him 12 hours ago, and we haven't heard since then..

Liam's life continually inspires me as I go through my own little trial.  He is so precious and such a fighter.  Here is a little paragraph about him that I copied from his facebook page:

William Elijah Lyon, affectionately dubbed Liam, was born February 18, 2011 at 3:25am to Whitney and Brody Lyon in Ft. Smith, Arkansas. Although he was about 5 weeks early, he was a perfect size weighing 6 lbs and measuring 19 inches long. But it was quickly apparent there was a serious problem. Thanks to Dr. Seglem and his diagnostic skills - Liam was quickly diagnosed with hypoplastic left heart syndrome. Our boy had a congenital heart defect that is fatal if left untreated. He was transferred that evening by Life Flight to The Children's Hospital at St. Francis in Tulsa, Oklahoma. The doctors spent a week trying to decide the best course of action and decided he needed a transplant instead of the first of three palliative surgeries (Norwood, Glen, Fontan) and he was transferred to Arkansas Children's Hospital in Little Rock, Arkansas. He and his mom were transported by an awesome Angel One team sent by the hospital. He has been there ever since. The doctors here thought he should have the surgeries to try and make his heart work as long as possible - maybe even until he was a teenager! He had the Norwood, but it wasn't working quite right and they had to operate again. It quickly became apparent that the palliative surgery iwas not performing as expected and he was listed status 1A for a heart transplant. He had the Glen, got better for a week, and got much sicker - and then he had a heart transplant. This is his journey and we love him. There are so many people who have followed his story and encouraged us with their prayers. We love you all.

PLEASE pray.  Here's a song that comes to mind when I think of Liam.  It was originally written for a little 5 year old girl with brain cancer.  Her website has received over 14 million visits.  Here's her story: http://www.caringbridge.org/visit/mcraekate

Please watch this video and read the words.  And most of all, please keep Liam in your prayers.

God is near, little Liam.