Puddle Jump Through Life With Us - Living... Loving... Growing... washed in the love of Christ

Puddle Jump Through Life With Us - Living... Loving... Growing... washed in the love of Christ

Become a Fan on Facebook

Twitter Followers

Flowing River of Blessings


It's time for a good book

Thursday, November 21, 2019

Six Months - How Did We Get Here?

This was intended to be a Facebook post on November 17, but I decided to turn it into a blog post since it's so lengthy. We appreciate your support throughout our ordeal, and really appreciate any of you who want to take the time to read to the end.

First, let me say thank you for your prayers. And, I don't know why God has been so good to us, but I will always give him the glory for John's health. I don't know why he is choosing to give John extra days on this earth in health while others go on to eternity or a devastating semi-living, non-functional human state. But, for some reason, God not only heard your prayers and said yes! By looking back over the course of events, I will always see God's hand in all of it, even to the point of where the bleed occurred, leaving him struggling for identifying words and detail, but still able to perform music, walk, talk, and be John. I mean, down to the fact that his curly locks were left intact even after surgery.




(Nov. 17) - Today is the day UPDATE ON @johnscott @johnscottmusician


It’s been 6 mos. since I heard those words “he may not survive this, and if he does he will not be the man or the musician you knew.”

You all have been faithful and sweet and generous to us. And, words will never ever convey what this has meant to us. From our friends who started the GoFundMe to Gene Ackman for organizing a fundraiser in July, to a gym and local pool membership to cards and flowers we received, to gas cards and restaurant cards to meals delivered during and after the hospital and rehab stay, to prayers, to friends with kind words to his sister who was my first point of contact for prayer who showed up every day and also sat with John so I could take the girls to VBS or simply head home from rehab to do a load of laundry, to those who cared for my kids while I couldn't, to Marvin, a friend who faithfully sat by John's side every day, to everything I'm sure I've failed to mention but still appreciate beyond words...

You have been faithful to pray and read my, and my sister in law’s updates, John's sister Janis Haas.

But, you may not know some of the specific details along the way, some of which I read in the medical reports after the fact. You may not know some of the trauma I and my children experienced as well, as John's medical emergency came just 6 mos after losing my mom. 

John had a large hemorrhage that covered his language center and occipital lobe. Based on the follow-up MRI results they now think it was most likely caused by something he was born with called a cavernous angioma. The MRI also showed no additional cause for alarm other than several small angiomas in the back of his brain, which will probably never be a problem but if they were, this would be fatal. We just trust God with all of it. But, we really will never know for sure, 100%, what caused it. I still have my own thoughts on this.

In case you never knew the background:

On May 17, in the afternoon, we were preparing to go to my daughter's recital. She had her phone on airplane mode so she could not receive texts, which would prove to be a blessing and a haunting curse for her. John had a music performance scheduled, but he was mysteriously just not on their books when he called to confirm. So, he was home after getting tires put on his van that morning. He came in from loading his van and getting the mail, threw the mail at me and said something wasn't right that his head hurt so bad. He went back to the bedroom to lay down as I sat praying and thinking, this isn't something he should try to sleep off. My 12-year-old, at the time, got him to describe the pain, and when he came out of the bedroom more alarmed and in more pain, I started asking him questions and having him lift his arm, stick out his tongue, etc. There was not really any significant drooping of his right arm, but he couldn't figure out how to stick out his tongue, still knew his name, but couldn't come up with his birthday. He then began to throw up. My daughter grabbed a bucket and helped him to the car as I threw on a different shirt and ran to the bathroom before rushing to the hospital with him.


On the way, all I could eek out was a cryptic text to my sister in law asking her to pray. At the stop light, I managed to do the same on a Facebook plea for prayer.

I'm sorry to say that at this point, I knew he needed prayer but was in no shape myself to do so. I was numb and reliving losing my mom watching my husband exhibit many of the behaviors she had prior to her death.

We arrived at the ER, and his blood pressure was 181/118. They immediately called a Code Stroke and told me they were taking him to CT for a scan. They returned quickly telling me he had experienced a hemorrhagic stroke and that they were intubating him because he was throwing up, not because he was not breathing on his own. The nurses were amazing at explaining every step, but watching the intubation was horrific as several EMS workers stood around him preparing him for ambulance transfer to a different hospital that had a surgical room ready.

We arrived at the other hospital to be greeted by the neurosurgeon, who at this point, was trying to decide if he wanted to do surgery now or wait. To do it now would mean he would potentially bleed out and die. To wait could mean a brain swell, shift and death. That's when the surgeon told me:

"He may not survive this, and if he does, he won't be the man or the musician you knew!"

I didn't like my choices.

Every possible thought raced through my head playing out every scenario and wondering how to go about planning a funeral, and what our life would look like with no dad versus a dad in a vegetative state for who knows how long.


The next 36 hours brought significant swelling and his brain began to shift off midline. Immediate surgery is often recommended for a 5mm millimeter shift. His had moved 1cm centimeter (that's twice the distance for those of you who may not use metric every day) when the surgeon asked my permission to do surgery. Below is the CT scan from the ER. The big white blob on the right (which is really the left side of his brain) is the bleed. I saw but don't have a picture of, the following scans where his brain began to shift. I do, however, still see it in my head.

 

This was a really tough decision to be presented with given that 6 mos prior I watched my mom die after a head injury from a fall that created swelling and a very similar midline shift that ended in her death, so I knew the seriousness and I knew the haunting medical terms (a whole lot of PTSD and not an experience I wanted to watch again, especially not with my husband as I still grieved my mom and wished, so desperately, that she were there to help me) So much so that I could almost hear her voice comforting me. 


His surgery was performed on May 19 early in the morning. We waited in the surgical waiting room with my sister and my children and my daughter's boyfriend as we watched a livestream of our church prayer meeting.... PRAYING FOR JOHN THE ENTIRE TIME. Just as the prayer service ended, the surgeon walked out not ten minutes later to tell us how it went.

The surgeon successfully removed the solidified blood that was approximately 5 cm X 2.6 cm, or about the size of a flattened tennis ball. Considering that the average human brain is about 15 cm. long, this was essentially on 1/3 of the left half of his brain.  This was no small stroke.



His surgery was a success, and then the recovery began.

What do 6 months mean?

...Well... I think with all of his progress, I’ve silently been holding my breath till we walked across this 6-month mark. 


One of those nights after a day in the ICU, even though my son warned me not to, I looked up the statistics of survival. Living to see 6 mos was a huge milestone and a big indication of further living. This is why 6 months has been my marked spot to breathe and relax if that's ever really possible.

Of course, I cannot find the one significant study that talked about the 6-month point, but here are some I have since re-found just to give you an idea at the low percentage rate of a good recovery:














While I breathe another breath of praise, there are still some areas of prayer, mostly with his word recognition and finances. Though there are a few other prayer points, these are the main ones.

We did have a minor setback on Nov. 1 when he had to return to the ER due to vertigo. But, thankfully, there was no new brain bleed, and he hasn't experienced any dizziness since. 



He is performing again but learning many new songs (mostly lyrics he hasn’t already memorized) has been challenging. At his last doctor visit, he was given the ok to Slooooowly try to get back behind the driver's seat as well. We are taking this slow since his peripheral vision is still coming back but not fully there yet.

While you all have been amazingly generous, and we had an amazing forgiveness letter from a large chunk of the hospital bill which was out of network, I just want to let you know a bigger picture of where we stand financially - During the initial emergency, we had to cancel 70 jobs. In addition to this, some places had cancelled him for the rest of the year. And, he has not been able to return to his guitar teaching job. On top of this, Tere has given up writing, which brought extra income as well.

To allow him to perform, I have become a full-time roadie, chauffeur, and booking agent while still attempting to provide quality education for our daughters at home and manage any other work that comes my way. I’m not asking for help with any of these tasks, I just want you to get a full picture of how our lives have shifted. We have all learned to lean into God for every second of every day. We have also seen the very best side of people, something I never thought anyone would ever hear me say since I tend to focus on the negative side of humanity. This has been an amazing exposure of kindness for me.

I probably won’t be making any more public updates until maybe the year mark in May because I don’t want to overwhelm anyone with long, constant posts. Please feel free to check in on us or ask any questions at any time through PM or comments below.

Again, thank you for your support, your prayers, and your kindness. I don't know how people go through something like this without it and without the hope in a healing and restorative God.




To top off our adventures, there were two tornado warnings while he was in the ICU and step down. This one stranded us in a hallway in the basement by the cafeteria.



 We knew he liked Star Bucks, but didn't realize just how much until our pastor brought him a cup:










 




 






















No comments:

Post a Comment