Sunday, August 12, 2012

It's Time

It's time for access.  Eli was admitted this last week.  It took us 8 hrs to get an IV in and we ended up having to give up on labs because we couldn't get any blood.  We were finally able to get him on some IV fluids and start his cleanout.  He did really well with his blood sugars.  Now that we know about his adrenal insufficiency and have very strict protocols in place and his meds we are much better equiped to deal with his sugars.  He had his EGD and colonoscopy the next day.  Hi GI said that his large intestines looked "weird".  There was discolored spots all over and he is unsure why.  He took alot of biopsies so we will get those results in a week.  He again agrees that Eli seems to be having an absorption issue.  His protein was again low and his nails are now beginning to fall off.  Between the labs and exams and tests and all of these things it's been decided to move forward with access.  Eli went from his procedures to ultrasound.  They checked all over to make sure he didn't have any clots.He will be admitted to the hospital on Wednesday and will be having a Broviac central line placed on Thursday.  We will be switching meds and fluids over to the central line and hoping to keep his nutrition running thru his J tube.  Currently the goal is to avoid TPN as we know he's had some struggles with his liver.
He also met with his orthopedic surgeon this week and got his cast off.  She was able to see where the foot was fractured but says it looks like it has healed nicely.  He's doing well adjusting to life without the cast.  We also met with his eye doc this week and he is going to work on getting a good fit on Eli's glasses.  This is something that we are really struggling with right now.  So I'm glad that he's taking that project over.

Emily ~ She's good.  She's been gone alot.  She has been spending alot of time with 2 friends that live close to here.  She's still busy with her violin and has lessons once a week, as well as daily practice.  She starts the 6th grade tomorrow, her last year in elementary school.  She got the teacher that she really wanted and is really excited about that.  Our elementary school closed this last year, so all 250 kids from our neighborhood school are combining with the school in the neighborhood next to ours.  Emily's age group gets the new wing of the school that was just built this summer, so they are all excited about that!  She will be in class with alot of kids from our old school, and alot of kids from the new school.  She's excited.

Jace ~ He just celebrated his 9th birthday on the 6th!  Getting so old!  We had a small celebration that day and then my parents came in town this weekend and we went to the Money Museum, to Steamboat Arabia, and out to dinner at 54th Street Bar and Grill.  He had a great time and got all of the presents that he wanted!  He got ninjago's with a book, remote controlled beyblade, the new diary of a wimpy kid book, a giraffe pillow pet, skates, socks, and some money!  He will be starting the 4th grade this year and also got the teacher that he was hoping for!

Benjamin ~ He's been busy swimming.  He is 100% a little fish.  He loves it.  He's been going to the outdoor pool this last week and jumps right off the diving board into the 12ft deep water and swims no problem.  I'm amazed at how much he's learned on his own.  He will be starting the 2nd grade this year and will be with a new teacher.  He is happy though because he will be with his best friend who just lives a few streets over from us. 

Ariana ~ She's been busy with her neighbor friends and playing with her new polly pocket that she bought with her chores money.  She spends alot of time with Eli and I going to appts and such.  She is going to be starting kindergarten on Wednesday.  She is excited to get to go to school full time.  She enjoyed her first year of school shopping and is all packed and ready to go! 

We had a garage sale 2 weeks ago and my kids again sold "Muffins for Mito" as well as keychains.  They ended up making $122 that day and have since made another $10.  We will be getting pics of their keychains up and continue to sell.  ALL proceeds go to our team for the Energy for Life Mito walk here in KC on September 15th.  We are excited to get to go again this year and see everyone.  We were also so proud of the kids and all their amazing work.

This next week will be a busy one.  Early this week I have to interview nurses.  We sadly lose one of our nurses because with the central line we are now only allowed to have RN's and one of our nurses is an LPN.  I also have a few appts, the beginning of school, and Eli's hospital stay will be here before we know it.

We are scared.....really terrified.  This is what Eli almost died from in January of 2011 (sorry typo. Accidentally typed 2010 but it was January 2011.  Gotta love typing quickly).  It scares the heck out of me to be at this point, to have no choice.  We 100% stand by this and think it's the best choice but sadly that doesn't take the fears away.  We are so happy with Eli's team and trust them with our sons life.  I'm just not ready to hand him back over to the anesthesiologist and surgeons again this soon, not that I'm ever ready.  We will update as we can.

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