August was a big month of appointments and finally received some answers we had been waiting on! Warning -- this will be a longer update!! Lots to share. 

The main concerns that we have had with Sam post-hospitalization have been: seizures, large DVTs/pulmonary embolism, just overall brain damage long term effects, and PTSD/mental health.

I'm going to try to touch on all that best I can! I will not be going into too much detail on certain topics/struggles, but this will be a great overview of some test results and doctor appointments. 

BRAIN DAMAGE

Permanent brain damage and cognitive changes is an unfortunate, yet expected outcome for the type of brain swelling and damage that occurred during the Meningoencephalitis. However, the discussion with the neurologist this past week was hopeful. She said she thinks his brain is still working on re-creating some of the pathways that were lost and that it's possible he could see some changes in the coming year. 

Some things he struggles with daily due to brain damage and the PTSD: 

- vision issues, especially as the day goes on

- fatigue

- severe light sensitivity (you'll notice him wearing some sort of sunglasses almost 100% of the time)

- constantly dizzy with balance issues/hits limbs on things as he's walking (his vertical axis is off, so you'll notice him tilt his head often when he's looking at you/something) 

- anxiety attacks, panic, very easily overstimulated by noises (aka 4 loud kids at home) 

- confusion about what he's supposed to be doing next when asked to do a task

- takes him longer to process information 

- trouble hearing

- lots of headaches, often vision related 

- struggles to remember how to do tasks & how to start 

- often forgets some of our "routines" at home (what needs to be done for kids' school prep, bedtime routine, etc.) 

- recently some extremely difficult mental health struggles -- thankfully MUCH better than it has been right now due to some med changes 

Is it permanent? This is a question we've been asked a lot. Short answer is yes. 

The brain MRI results show large bilateral areas of deep damage/scarring. But! Just because there is damage doesn't mean that the brain can't continue to try to reconnect some of the neuro pathways it once had. I'm definitely holding out hope that things will improve over the next year or so. 

BLOOD CLOTS in 4 extremities & Saddle Pulmonary Embolism

To recap: during the hospitalization he suddenly developed massive DVTs (blood clots in the deep veins) in his arms and legs. A large (about 9 inch) chunk of one of these clots went and lodged itself in his lungs and caused a saddle pulmonary embolism which nearly killed him. It was surgically removed. 

The worry with all of this has been WHY did his body start clotting like this? His hematologist ran lots of blood tests to determine if there was any sort of genetic factor contributing to this. Being hospitalized and having an infection already puts your body at a higher risk of forming clots, but Sam's clots were so severe that she thought there may have been something else going on. 

Turns out there wasn't, and that the clots were formed because of the rampant infection taking over his body. We still have a bit more blood work to do, but we are so thankful to hear these initial results. 

❤️Praise #1 is that he does NOT have a genetic predisposition to forming clots. 

In July, Sam had ultrasounds/dopplers done of all 4 extremities to check the status of the ankle-to-groin & wrist-to-shoulder blood clots. To our relief, the DVTs are gone (!!!) -- the blood thinners did their job to give his body time to break down the clots. He has extensive scarring in his deep veins that will be there for life (just because of how extensive the clots were), but this scan gave them a great picture of his new "baseline" so that if anything happens again, we'll be able to compare scan results. 

He also had a CT done of his chest, which showed a small amount of damage from the PE, but thankfully CLEAR other than that!! 

❤️Praise #2 is that the DVTs are GONE, aside from some permanent scarring in veins and lungs. 

As for continuing on blood thinners:  

We had two options. 

1) Stop taking blood thinners and just use them during times when he is at a higher risk of forming clots (for example -- airplane ride, long car ride, etc.) OR 

2) Continue blood thinners for life (but at a lower dosage) because he has a higher risk of forming clots like this again if his body is under attack in any sort of way. 

We chose to go with #2 because honestly it just scares me about the risk of the massive clots happening again. Also, Sam works in an office and is sitting down for a large portion of the day. 

SEIZURES & MED CHANGES

❤️Praise #3 is that Sam has been seizure free for SIX MONTHS! 

This is a huge milestone and it also means he is now cleared to drive. He has been driving himself to a from work for the past week and he is so very thankful for this piece of independence he has gotten back. I am not comfortable with him driving our kids, but having him be able to drive himself to work has been a HUGE weight lifted. 

Sam takes a very high dose of anti-seizure medication twice daily. He was recently switch to a different anti-seizure medication and we are hoping that it works as well as Keppra has been for the past 6 months at preventing seizures. This med was changed because we believe the Keppra was contributing to some of the intense mood side effects Sam was having, so we are hopeful that things will be better overall because of this change. 

That's all I can think of right now to write. Thank you all for your continued support and prayers for our family. It's been hard, but we're making things work. We're still just in the process of adjusting to our new normals since December 2022. New normals for Sam, for myself, and for our family as a whole -- and not only adjusting to them, but accepting them. It's been tough. 

Love you all!

Allison, Sam, and kids