Life just got crazier!

This blog has been mainly focused on Madalinn and her health journey since late October last year.  We have loved that so many of you have followed along and are praying regularly for her.  In my last post I shared about how the boys went to Cincinnati for HHT scans, but I left out one of the boys...Josh, my husband.  At the time we were not ready to share about his findings yet.  Today I am sharing with you this new journey that we are on.  This might be a long post, but I think I should start at the beginning.

All of his life, Josh has known he has HHT (Hereditary Hemorrhagic Telangiectasia) a blood vessel disease. It runs in his family and they affectionately refer to it as "the bloody nose disease". When Madalinn was diagnosed with Pulmonary Hypertension she was tested for the genes that cause HHT and was positive for ACRLV1.  It has been determined that that gene is what caused her PH because of disease in her pulmonary arteries.  

Once she tested positive, Josh and our two sons were also tested and found positive for ACRLV1.  With HHT it is highly recommended to have a brain MRI, lung scans, and blood work to check the liver so they can find any malformed vessels (AVMs) that may need fixed to prevent future problems.  Josh has never had these scans so we decided to have him and the boys scanned in April.  Madalinn received all of these scans during her hospital stay in the fall.

Hosea checked out fine and is recommended to follow up in a few years.  Crosby will be going for a CT scan on his lungs to check out how large or how many AVMs he has.  This will be June 9th in Cincinnati.

That information was all a recap of the journey that I've shared in past blog posts.  

Now for the new stuff...

After the scans on April 29th in Cincinnati, the neurologist met with us in a room separate from the boys and told us that Josh has a large AVM in the left frontal lobe of his brain.  It measures 7cm x 4.9cm x 4.5cm, the size of a clementine.  We were told his was born with it and that it is amazing that he has lived with no symptoms for 40 years.  (Below are the photos from the MRI.  It looks like the AVM is on the right side but that is actually the left side). We left that visit feeling fear, sadness, and shock while wondering if anything could be done.

On May 18 we met with Dr. Powers, a neurosurgeon at Ohio State University Hospital who told us that, if left untreated, there is about an 80% chance that Josh will have a stroke from this at some point over the course of his life.  However, Dr. Powers feels like this is completely curable.  He laid out the following plan:

Step 1: Do an angiogram (a camera through the arteries to the brain to get a detailed road map of his AVM).  During the angiogram the doctor plans to embolize parts of the AVM (to intentionally block of blood vessels to redirect blood flow)

Step 2: A few days to one week later - repeat step 1

Step 3: A few weeks later - If no further embolization needs to happen they will proceed to brain surgery.  In this step they will open his skull and remove all un-needed vessels.  This has a 6 week recovery time.

The goal is that after these procedures are finished the risk of stroke will be eliminated. 

How are we feeling?

Josh is feeling excited to get this thing out of his head.  He feels a ton of relief that we found a great surgeon and there are things to be done to fix this.  

I am feeling nervous about timing and the vastness of brain surgery.  I continue to cast my cares of the Lord and trust him to carry us through this.

When is this going to happen?

We are hoping for July.

In other news...

We are in contract on our house and close on June 16.  We are in contract on a house in Centerburg that the Lord placed in our lap and close June 17.  We will be moving the weekend of June 24th.  

Ways to pray:

1. Pray for Dr. Powers to remain in network.  We have already reached our max out of pocket for the year so all of Josh's procedures will be 100% covered by insurance if he is in network.  Dr. Powers is also one of three doctors in Ohio that specializes in Josh's situation.   THIS WAS ANSWERED!!  He is continuing to be in network! :)

2. Pray for us to continue to trust God.  Thus far, he has given us a peace that passes our understanding and has allowed us to experience his easy yoke and light burden.  

3. Pray for Madalinn's heart Cath on June 1st and Crosby's CT on June 9th.

4. Pray for God to heal Josh's brain AVM 

Two last cool things

Madalinn has recognized that there is great purpose in her pulmonary hypertension.  Without her diagnosis Josh would have never gotten scanned.  Her sickness is saving his life!  

When the doctor was talking us through the pictures of his brain he said, "there is no brain tissue in his left frontal lobe.  It's all blood vessels." I asked, "How is Josh functioning so normally with no brain tissue there?"  The Doctor replied, "since he has had this since he was formed, his brain has never known any different.  It just used other parts of his brain to make up for the loss."  Our Creator God is just so amazing!!  

If you have any further questions, please feel free to reach out and ask.