Thursday, February 19, 2015

Recovery mode

My goal in starting this blog was to keep people updated on Jeremy.  Then I wanted to offer support to other families raising a child with chronic medical/developmental needs and to be an encouragement.  I wanted others to see there is joy in life with GOD in even the most trying circumstances.  My long term goal was to eventually write a book about living in Jeremy world, which is where I got the title, Welcome to Jeremy World.  I want it to be about Jeremy's world, I don't want to box cut him to fit into the world but the other way around.  This seem to be a good place to gather my thoughts and eventually get my contents.  Then GOD sent us the side-kick, the Mulley cat so I changed the blog and added including Mulley (her name is Mollie but that is how Jeremy pronounces it) remember this is about Jeremy world.  I then started to ponder writing a series of children's books with these 2 funny characters because there isn't much "Normal" in this world and I think people forget that.  I however am constantly reminded of it because again I live in Jeremy world including Mulley.  I'm not sure which direction GOD is leading me so I continue to blog.     

Jeremy got really sick a few weeks ago, but he is in full recovery mode.  He started running a high fever, we checked him for flu, UTI and both were negative.  He stayed home from school for a day, but played, acted like himself, so the next day he went back to school.  We had a few nice spring like days so he played outside.  Thursday morning he woke up with yet another high fever, that seem to have a vengeance.  Jeremy was maintaining his oxygen and heart rate, but Cyrus felt since his fever was back we test needed to be ordered.  We did a chest X-ray, CBC and blood cultures.  Jeremy's nurse was scheduled to be at the house until midnight so I was able to get some sleep.  Jeremy started about 1am, with high fever, couldn't maintain his saturated oxygen levels, he was working hard to keep it between 88 -90 on 2.5 liters of oxygen and if he took his nose cannula off (which he does at times)  he dropped to 73 and was taking him a while to get back up.  Jeremy is on oxygen 24/7 so we have it at home, plus we do continuous pulse ox at night.  I was monitoring him closely and knew what to watch for.  I can tell you, he scared me many times, as a mom of a child with chronic health conditions my son keeps me grounded and makes me realize how fragile life can be.  I was scared, scared that Jeremy might not survive this sickness and that he was going to take his last breathe.  I watched him like a hawk from 1am to 6:30am and was exhausted.  Jeremy finally started maintaining his oxygen at 93, so I turned it down to 2 but left it there to give him a rest.  The results where viral pneumonia, elevated white blood count and strep, blood cultures were coming back negative.  We seen Cyrus partner that afternoon, she started an antibiotic and asked if we wanted to be admitted because he was there.  I was trying hard to keep him out of the hospital but I was also on the fence, exhausted, afraid of another repeat night and me rushing him by ambulance to the ER.  I opted for us to go home, where I knew he would be comfortable.  Jeremy did much better that night, fever broke, he was maintaining his oxygen at 93 on 2.0 and he slept soundly.  He did stay home from school for 2 weeks, but is back to his baseline. 

If he ever requires 3 liters of oxygen for more than 30 minutes his Pulmonologist says he needs to be in the hospital so they can give him some assistance, which would mean he would need to be put on the vent, to give him lungs/heart a break.

I was driving to Muskogee and that was my first quiet time that week to where I can sing out to God, worship him, and seek  his face.  It's like GOD is starting to teach me compassion and mercy, he extended it to me and how I need to extend it to others.    The fact that I have this amazing Grace.  I have my total faith, trust and life in GOD and I know at the end of my life when I stand before God, that I WILL HAVE HAD EVERYTHING BECAUSE I HAVE GOD.  I also know God has plans, reason beyond my comprehension and I won't understand them all, but I don't have to because I have my faith in GOD.

Here are a few pictures of Jeremy world....
Beautiful Sunrise, waiting on bus

Mollie enjoy the spring weather

A tired boy, ready for bed

Cat in a box

Finally feeling better
To much time together

Mollie watching it snow

Mollie in a box

Ready to pounce on Jeremy

Ready for a break