Monday, August 20, 2012

Super fast update

This will be a quick update as I don't have a whole lot of time.
Eli's lovenox levels came back off still so we are adjusting the dose and will redraw at 2am wednesday morning.  Also we are still working thru feeds, fluids,IV pumps and supplies and hickman supplies and lovenox and all of those things ordered.
Lastly we met with his GI doc today.  He spent some time going over the biopsy findings.  They showed blood cells and immune cells all thru the intestines full of iron.  He has no idea what's going on but they are pretty sure they know what's causing it.  He ordered 2 full pages of lab tests and we drew those today (from the awesome) and then he will be scheduling Eli for a liver biopsy.
Everything is pointing to the liver.  Multiple docs over the last few months have suspected liver problems, some labs have also pointed to it.  So now they are seriously ready to investigate the liver.  We are nervous.  This is one body part we don't know much about we just know you need it.
We will update more as we know more.

Friday, August 17, 2012

Out of Surgery and in PICU

Eli got to the hospital Wednesday morning at 8:30.  He had his ECHO and we met with the surgeon to go over his plan.  We got to the floor around 10.  We were never able to get an IV.  So many attempts and so many bruises.  We got 1 IV in and started fluids and lost it 12 minutes later.  So anesthesia came and adjusted everything and we were able to keep fluids running thru the J until right before surgery to keep his sugars stable.  He went down to pre-op around 6:30 thursday morning.
Anesthesia and the surgeon spent quite a bit of time going over procedures and precautions.  Some things had to be adjusted since Eli was going into the OR without access.  They ended up giving him some versed thru this J tube and that really calmed him down.  They were finally able to get an IV in his head right between his eyes in the OR and were able to get surgery started.  They both came out and talked to me saying that his veins are shot and very thin.  They would be right inside the vein with no return of blood and the moment they tried to push they kept blowing.  They aren't sure why this is happening.  They were able to get a Hickman placed.  It's in his upper clavical and chest right over his heart.  The surgeon was happy with the placement and we were able to use it within 2hrs of surgery.  We have had no issues giving fluids and drawing labs.  They admitted Eli to PICU after surgery and that's where we still are.  His HR struggled a bit late yesterday evening and the doc ordered an EKG.  All looked good.  He stabilized.  Lovenox was started last night and no bleeding so far with that. 
Currently he is back on his elecare feeds thru the J tube and we are pushing all fluids thru the hickman.  This morning the team is coming with the pharmacist and the dietician to work on getting meds switched over to IV as well as a permanent fluid and feed schedule. 
We are hoping that he will be able to go back out onto the floor today.  They are also hoping to run some more metabolic testing today as his protein levels are still low and more nails are falling off.
Lastly we got some of the initial biopsy results back late yesterday afternoon.  They are another set of findings that the doc doesn't quite understand.  They showed hemosiderin containing macrophages in every level of the colon.  Basically this means that the hemoglobin (blood) is eating basically blood.  White blood cells are eating red blood cells.  They aren't sure why this is happening.  There are some explanations but they are still trying to figure out what this means for Eli and what we need to do next.  His GI doc is meeting with the pathologist on Monday to look over the slides and chat some more about it all.
We will be inpatient until atleast monday as we have to get to a therapeutic dose of lovenox as well as getting all of his fluids situated and obviously ordering all of his supplies and such to go home.  They team is already working with his case manager, DME's, pharmacies, and nursing agency to get the home stuff taken care of. 
We are exhausted as always but everyone is very hopeful that we are on the right track.  I will update more later tonight after we meet with the teams today and have more info!
Here is Mr Eli waiting for his ECHO.

Here is Eli in Pre-Op hanging out with his baby.

Eli and his baby after surgery in the recovery room.  Notice that baby came out of the OR with her own hickman.

Eli and his baby both showing off their new hickman lines!

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.