Moving Day is in 30 Days!!

Things are falling into place for Cleveland...  we move in 30 days!!  We are in the process of gathering records and scheduling appointments at Cleveland Clinic.  Michael is currently scheduled with an esophageal GI specialist that we hope will be able to get him off of the feeding tube.  He's also scheduled with cardiology, endocrinology, and a primary care doctor.  We are still waiting to hear back from neuro...  they are reviewing his records to schedule him with the most appropriate doctor.

As far as Michael goes...  it's been up and down.  The story of his life.  About 2 weeks ago Michael started acting funny and then woke up the next day with a very strange... but familiar headache.  We immediately recognized he was dealing with high intracranial pressure...  pressure in the brain.  His neurologist had us come in the next day for a spinal tap and it confirmed what our suspicions were.  For most of us, our ICP is 13-17.  It is not uncommon for Michael to be closer to 20 and even the low 20s.  His pressure was 31!!!  Dr. Sahgal drained 21 units of fluid off of Michael's brain and by the next day he was feeling MUCH better.

His pressure being that high leads us to many questions.  Why?  What's the syrinx doing in his spine?  Does he have new scar tissue in the brain that's causing it?  We talked with the neurologist and decided not to pursue any more MRIs here, but to wait until we move in 5 weeks.  Why you may ask?  Because it doesn't matter what they find on the MRIs...  we wouldn't treat it until we got moved anyway.  We did, however, agree to see the neuro-ophthalmologist to be sure there was no damage to the optic nerve.  Thankfully, there isn't a permanent damage...  only some mild swelling that is improving.  

So now we focus on our move in 30 days.  I'm flying to Cleveland next week for interviews, to see our house, and to talk to an insurance broker to get health insurance arranged for Paige and I.  We started this venture 6 months ago knowing we would need about $5500 set aside to get moved.  That number is now down to about $1500...  so we are WAY closer, but not there yet and starting to get nervous.   Especially not having a job in place yet!  We are incredibly grateful for the Visa gift cards and food gift cards we have received to help with the 4 day trip.  

That leads me to prayer requests....

1)  Michael's ICP will stay stable until we get moved
2)  I will find the right job that will offer me the benefits and flexibility I need
3)  That the financial end will come together so that we don't have to stress about GETTING to Cleveland!
4)  That the review team at Cleveland Clinic will partner Michael up with the PERFECT neurologist to help him improve!

As always, much love to all!  

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If you feel led to help, you can donate through the One Day at a Time, One Prayer at a Time  site.  Any funds received will be used to help Michael and his family with the travel costs and medical expenses for all appointments, copays, deductibles, other out of pocket medical expenses, day to day living expenses associated with chronic illness and disease.  If you prefer to send a personal check or gift card, please click the "Contact the Organizer" link on the site for an address.
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Scroll on By.....

This is a note from me...  Michelle. 

I have been criticized a lot over the last few years for being negative...  or "draining" in my updates or posts on Facebook.  I've been told I "share too much".  I had a church member tell me that I was "depressing" and my posts were not good for her spiritual health.  I even had someone tell me that people think I "make it up" because there's no way this much could really be going on.  Just this morning, a family member messaged me that he was deleting and blocking me because it's "depressing".

Michael lives with post-brain injury deficits and severe dysautonomia.  More days than not Michael is unable to leave the house.  He can't drive to the grocery store and get the things we may need because he forgets how to get there or forgets the few things he needs.  He has to have someone with him at every doctor's appointment because by the time he gets home he has no recollection of what was discussed and by the next day he doesn't even remember being there.  He can't take the kids to any of their appointments for this reason as well....  so I do.  He has to use a very specific pill box and things have to remain in order on the medicine shelf or it will throw him off and confuse him, causing missed meds or overdosed meds.  Often Michael forgets what happened last fall leading to the reason he is on a feeding tube and will eat because he wants to...  leaving him coughing for hours and then saying "oh yeah.... now I remember".  More days than not he is in a dark room because of the debilitating headaches and dizzy spells to keep them at least "tolerable" so that he doesn't go into a seizure.  Kids have came home with a friend, introduced him, and 3 hours later he ges upset because no one told him we had company in the house.  We put EVERYTHING on a paper calendar including church days, my work days, when people are coming, when to refill meds, etc. because he can't keep track of things and forgets that something as simple as church that we go to every single week.  There are days where the brain just has had too much and he sleeps for HOURS.  TBI sucks every bit of emotion out of it's victims, leaving Michael apathetic to pretty much any situation around him.  Holding a conversation with him is hard because he will forget the topic, what he's going to say, or just not be able to get his words out.  When we are out in public or at church he puts on fake face so that people won't worry about him or think him any different.  But that exhausts him and when we get back home he will sleep for hours.  He tells me he feels "useless" because he can't work to bring in the extra income we need to survive, can't go and do a huge grocery shopping trip for me so that I can rest on a Saturday, and most recently verbalized feeling useless because we had to ask family to fly in to help after Paige's upcoming surgery because he can't lift her to help take care of her.  We don't go out to dinner.  We don't go to events.  We don't have an intimate relationship.  We don't have a "normal" marriage or family life.  Sure, it's not a cancer diagnosis.  But TBI and all that comes with it is a lifelong, debilitating, progressive disease that changes our life every single day in different ways.  

So, my response to those of you who have criticized me is this...  If a simple Facebook post or a family update makes you feel this way about me...  good.  You are getting a tiny little 10 second glimpse into our every day all day life.  Be thankful that you can click "delete", "block", or scroll on by.  I can't.  WE can't.  We have to face it every single day.

Updates...

Michael had an appointment at the BRAINS Clinic with Dr. Cardenas this week.  He was thrilled with Michael's progress... ESPECIALLY the progress he made with Physical Therapy. He assessed Michael's balance, walking, etc. and he said "Wow! That's a significant improvement!". Those are great words to hear out of a doctor's mouth. He reviewed the report he got from the Neuropsych testing that they did a few months back and compared it to the previous testing from 2 years ago. Overall, fairly comparable. There was some decline in a few areas - the most notable was memory and processing. He said that as we age we ALL decline in those areas and with Michael's past TBIs he would expect those areas to decline a little more rapidly than average. Because Michael has things in place at home to help him in these areas (white boards throughout the house, uses a pill box, etc) he wasn't too concerned. We talked about our upcoming move to Ohio and he said we were doing the right thing. He is going to see Michael will see Dr. Cardenas one more time before we go and then send all the records to the neurologist at Cleveland Clinic.

The feeding tube adventures have been up and down.  

Michael landed in the ER, and then was admitted to the hospital Wednesday. We went after the GI sent us there for a very evident infection in the stoma (the hole) of his GJ tube site to have it cultured and have the placement checked. We figured it would be a quick ER visit to figure out the type of infection and then send us on our merry way with a script for oral antibiotics. Instead, the scans to check placement showed that his tube had somehow coiled up and was actually into the stomach area, not the small intestines where it belonged. They initially said we could discharge home and come back outpatient to have it fixed. UNTIL the ER doctor realized he feeds into the small intestines using the J port because he can't have food in the stomach because it will reflux into the esophagus and spill over into the lungs causing aspiration pneumonia. So... he couldn't continue feeds obviously.... but also couldn't eat. Then she put 2 and 2 together and she suspects when Michael was so sick last week it was likely because it has been coiled and this scenario is exactly what happened.... he aspirated the feeds and what the PCP thought was a simple bronchitis with junky lungs was probably aspiration pneumonia. Next thing we knew she came back in and said he earned himself a hospital stay and surgery the next day!

Michael had the procedure yesterday afternoon to fix the tube and it couldn't have gone smoother. He was in the procedure room about 30-40 minutes, but he actual process of fixing it took less than 5 minutes! The preliminary culture reports were back on the infection by the time we got back... it's full of all kinds of icky stuff. The hospital doctor was confident they could treat it with high dose oral antibiotics (500mg of Keflex FOUR times a day!!!) though, and once they ran about 30 min of the feeds into the tube without any issues they discharged him.

Michael has to follow up with Dr Mohindra (primary) Tuesday morning to be sure the antibiotics are doing their thing, and then follow up with his GI doctor the following week. We have LOTS of questions for that appointment, but we are thankful all is back to "normal" for now!

Things are moving, albeit slowly, for our upcoming move home to Ohio.  The biggest challenge to actually GETTING there is the financial end of it....  we put together our moving budget (moving truck costs, gas for the 3 day drive, hotel stays for 2 nights, food along the way, cushion for emergencies, and deposits on the new house/utilities.  My mouth hit the floor when I saw the total go well over $5000!!!  Aye-yi-yi!  I had a good interview with a SNF contract therapy company and have had a few more calls.  Unfortunately we're still too far out to really get serious about moving forward.  It also looks like we found a house already!  The house is in the school district that Paige wanted to be in and within walking distance, where her Uncle Bill teaches.  We started scoping out churches in the area and the one we've felt most drawn to also meets at that same school.  

Things to pray for are....
- Michael's stoma infection to clear
- That Michael would NOT get "c-diff"...  he had Rocephine 10 days ago followed by 7 days of Levaquin and now a 10 day high dose of Keflex for infection...  he is at high risk of c-diff as a result of all the antibiotics.  No thank you!
- For the financial piece to fall into place for our move so that we can have that worry off our shoulders
- Also, we have a few unmentioned prayer requests for 2 family members who are battling serious health issues

Much love to you all!