June 10, 2008

The scoop

I have a page of hastily scribbled notes from the doctor's phone call yesterday. They are almost worthless, stating things like: "no bike or hammock", "brace-clam shell", and "surgery with gen surgeon." It was a gut wrenching phone call. I can't say our worst fears have been confirmed, because I can't even think about my worst fears. Though what I'm about to write may seem absolutely terrifying; I hung up the phone and thanked God for watching over my daughter.

The MRI showed that Salomae's infectious mass is only in front of her vertebrae (this is good news). Her spinal cord is draped over the mass, and her vertebrae are in a precarious position (very bad news). The doctor then informed me that most children under the age of 5 who have this are paraplegic. Since they are in developing countries, their parents don't get them medical help when the lump on their back shows up. Their bones deteriorate until one morning they can't move their legs, or perhaps they fall and injure themselves. When he said this, I stopped my note taking and sat their for half a second thinking about all of the bike accidents, sliding headfirst down the slide, flying off the hammock...and I almost wept because any of those things could have paralyzed Salomae. We are getting a brace for her back that will protect her from causing permanent injury to her spine. Until then, no physical kid activities because one fall at just the right angle would mean she spends the rest of her life in a wheelchair.

The doctor was hanging up with me to consult a general surgeon about our case. They had scheduled an appointment for us at 2:00 with this surgeon, "Can you make it?" Uh, yeah. I tried not to think about the madness that would ensue in order to leave the house in 45 minutes (I had gone for a run and was still sitting in my sweaty clothes, no lunch, baby on my lap having a bottle). Thankfully, I have a friend who is able (and willing) to watch my four children.

This surgeon will perform the biopsy that we need in order to successfully diagnose Salomae's infection. Most likely, it's tuberculosis. I know, freak out. We already did. Fast forward to our appointment at 2, which turned into 3:15...This doctor comes from the Big City only once a week. He expressed how lucky we are that there are two fantastic pediatric orthopedic surgeons at the hospital (who we already saw). Otherwise, we'd be traveling an hour or more to a children's hospital for these appointments. This doctor immediately put me at ease as he reminded me of the pastor who married Seth and I. He is a kind, straightforward doctor and explained things in a very clear way.

**Only read further if you want the nitty, gritty details**
We have three stages ahead of us. First, diagnosis (requiring a biopsy). Second, medication and then, surgeries to 'fix' her back. The biopsy is presenting him with a little difficulty. The mass is unapproachable from her back, so he will have to get it from her chest. He could try a needle, but perhaps won't get enough tissue for diagnosis. He could do it laproscopically, but same issue-not enough tissue. Perhaps even complications because of internal bleeding. Third option is to slice into her chest, pull back her ribs and access the stinky glob of infection from there. He said that would be the safest bet. Which seems weird to me. At any rate, he's trying to weigh everything to make sure we do what is best. She has a lot of major surgeries ahead of her, we'd like to have the least invasive procedure, maximize the amount of tissue for biopsy and culture, and keep her safe. He's consulting with a radiologist, pathologist, and the orthopedic surgeon. Then, he will call me today with a plan.

We should be visiting the brace-man today for measurements to order the back brace. I've been taking my older daughter there for 3 years for a prosthetic leg. Now the leg-man is the brace-man, too. I needed to talk to them about a new foot anyway, killing two birds with one stone is so nice.

I hope I don't sound lackadaisical about the dire situation that my daughter is in. The only thing I can do is thank God for his provision this far and pray that He continues to keep her safe. Beyond that, I don't know what to do except follow my notes that say, "no bike or hammock". Please pray that she stays safe and the doctors have wisdom in determining treatments and surgery.

19 comments:

Jill Coen said...

Apryl, you amaze me! The Lord has put Salomae in your family on Purpose!! He is going to get you through each stage of the plan. Praying for no falls! It's obvious, as if it weren't before, that His hand has been on this little girl from Day 1.

Thanks for taking the time to update!!

love,
the huggers

Sherry said...

Apryl - What a praise that the Lord has brought Salomae to a family who can get her the medical care she needs and the love to encourage her through it! I am praying for wisdom for you and the doctors. I am praying for complete healing, whether through divine intervention or through medical care. Give your sweet daughter a hug from me! My heart and prayers go out to her.

Blessings! Sherry Semlow

Karen said...

We will continue to pray for you and your family!

sdd said...

Apryl--Have been following your blog since you went to Ethiopia. (Have since gone back and read the whole thing--love your writing.) Tough news about Fetya! You are in my prayers and thoughts. Don't know if you're familiar with the Horrock's blog--they adopted from Liberia recently, and their little girl had tb in the spine, required major surgery, and is still in treatment. Their blog is http://deniseinsc.blogspot.com/.
God bless.
Symona

the Steiger's said...

You seem so calm.
I will be praying for your family. Wow you have a lot on your plate. I am so glad you got your girl just in time before something happend. Love to all
LEnka

William said...

Harbaugh family -- we are praying for all of you. Thank you God for your continued provision and presence with this family and the assurance that you will see them through even the most difficult of times.

Susan said...

Awww man! What a blessing though that Salomae is part of your family and will be getting help! She is in the perfect family to help her.

Love & Prayers, Susan

Taylor Family said...

Apryl, thank you for your faith towards God in this difficult time. His grace is so evident in your life and is a testimony to me. We are praying for you all, may you be constantly reminded that His grace is sufficient for you and that you have no reason to fear, He is with you!

E said...

Apryl,

I wholeheartedly agree with what Jill wrote - the Lord has put Salomae in your family for a reason! But...oh...the "something" of it all. I'm hoping and praying for all of the best possible outcomes.

Ugh! This news is heartbreaking and scary. I'm praying for you guys as you face the challenges before you today and in the months ahead! I'm in awe of the way your handling it all - I'd be having a breakdown about now. It's OK if you need to have one...I'd still be in awe.

Love, peace & prayers,
Erica

Steve & Anna said...

Apryl,
We will be praying so much for all of you and especially for Salomae's safety and wisdom for the doctors. This is a huge journey! Thank you for sharing so we can pray.
Anna Stager
(AWAA)

3Points said...

Apryl,
I have been following your blog for sometime now. All of your children are so beautiful. You may know the Luncefords who are waiting for referral. I am Ryan's sister. I am also an orthopedic nurse. I have worked with 100s of kids who have had spine type surgeries for one reason or another. I just wanted you to be aware of our specialty hospital here in MN where we have some of the best ortho MDS in the country for spine surgeries. We have families who travel from all over to see them. I work for Gillette Childrens Specialty Healthcare. We specialize in caring for children with special needs. Visit www.gillettechildrens.com. We will be praying for you and your family. If you have any questions please feel free to contact me. I also wanted you to know that you may be able to go to Shriner's hospital(if there is one near you) and most services are free.
Blessings,
Kristy

Rob & Candy said...

Apryl, praying for yout and your family.
xxoo,
candy

THE HARPOLDS said...

Apryl:
We are praying for ALL of you! You are an amazing family and God has chosen you for this precious child and He will see you through this!

I will especially be praying for you trying to keep her from the "no physical kid activities"! We met her and we know how active she is!!! This may be the hardest part of all! LOL!! WE LOVE YOU GUYS and will be praying for God's hand to be on your family!!

Mel
AWAA FAM
www.ouradoptionstory-blessed.blogspot.com

Jori said...

Wow, I only have 3 kids right now and just can't imagine telling any of them "no phsicaly activity"! I am praying with you for the wisdom and hand of God himself to be touching dear Salome through the doctors! What a blessed girl she is ... lifting up your entire family right now!
Blessings, Jori

Team Dragovich said...

Wow, what else can I say that everyone hasn't already encouraged you with!!! You ARE doing fantastic, and it is very obvious that God put sweet Salomae in your family for His purposes and plans. One step at a time, one "no hammock" or "bicycle" at a time, :) and most importantly, continued faith... Keep your eyes up, Girl!
Love,
Shari

PS. Thank you SOOO much for keeping us in the loop.

shawn and tisha said...

Apryl,
Praying for God's great help, provision and protection over Salomae and your entire family.
Blessings and Peace to you in Jesus name,
Tisha

Jen said...

Apryl... Girl, I don't check everyone's blog for a while and look what we've gotten into!

I will surely be praying for your family and especially for Salomae. What can I say more than that? Please keep us informed.

Carpenters said...

Well, now I know why you haven't gotten much sleep lately. (Although I'm sure Josiah has his way of keeping you awake at night too.) I'm glad that you now know more and have a diagnosis. You really are super-mama taking care of this and remaining so calm. Praise God that Salomae is getting the care she needs and has not injured herself. Scare stuff. We will be praying that God give you wisdom on how to proceed and that He keeps Salomae safely in His care.

With Love,
Penelope

Farmboy and Buttercup said...

Wow! How blessed we are to have faith in the ONE who is in control during times like this. Your faith is an encouragement to us all, although I know the enemy will try time and again to shake it!

Take care!