Saturday, April 30, 2011

Quick Updates

Eli and I are in KC.  We got in Friday evening.  Went to look at a house that works perfectly for us!  We got back and put Eli to bed.  We hung out with our friends visiting and came to bed around 11pm.  Eli had been struggling with some coughing fits and gagging, but this isn't anything new unfortunately.  Bob woke with Eli at 1:30am as his sat monitor was beeping.  He went to pick Eli up and felt wet everywhere.  Eli's GJ had come completely out.  So our friends had a foley cath and we got that in.  Then our friend, who is an RN was able to finally able to get a G tube in.  We called CMH and they said to go to the ER.  We were there for hours and they finally decided to not drop an NJ or do an IV and to just have us come back at 8am.  So we drove back and forth.  So we slept like 2 hrs.  He did finally get his GJ replaced.  Now this evening he's super fussy.  His belly seems to be bothering him from all of the irritation and the barium.
Tonight and tomorrow we are hoping to rest.  More updates hopefully tomorrow.
lots of doc appts this upcoming week at CMH.  Hoping for some more answers.

Monday, April 25, 2011

Easter Weekend

I'm exhausted so a full blog update isn't happening tonight BUT here are a few pictures from Easter. I will get a full blog post up tomorrow!
I'm still trying to learn my new camera so red eye is horrible.  I will have to figure that out!

Thursday, April 21, 2011

Behind on Updates

Again I'm a bit behind.  Eli was in KC earlier in the week.  He had his PH probe, as well as his kidney ultrasounds and urology appt.  We are still waiting on the results of the PH probe.  His kidney was still very large BUT looked slightly better than his last scan.  His doc wants to redo in a few months.  We will begin discussing his next testicular surgery. 

Since coming home he's made a huge advancement.  He has learned how to hold onto something and go to standing.  He's such a big boy!  Once he even figured out how to get back down to his bottom once.  It makes me nervous as crap.  Everytime I just keep thinking about his blood thinners.  I sooo can't wait until he's off of them.  He's still as exhausted as ever though.  He is napping every few minutes, and every few crawls.  I feel so bad for him.
He also had his next speech appointment.  Finally we are all on the same page.  The hearing aids don't appear to be making a difference.  He isn't responding to more sounds, he isn't making any more sounds, and he still isn't responding to sign language at all.  It has been decided to start Eli on a switch with pictures.  We will be trying the basic "real life" pictures instead of stick figure drawings.  If that doesn't work well for him we will switch over to actually pictures from OUR home.  Right now his switch will be super big with a very large picture, since his eyes are so horrible.  She will start him with 1, and then advance up to 2 or 3.  I'm excited to try but also so nervous.  What if it doesn't work?  He is almost 17 months and has ZERO communication. 

Today was/is my birthday.  It has probably been the worst birthday of my life.  I'm so glad that it's the end of the day and can't wait for it to be over.  I will say that some special people in my life rallied together to help save the end of the day.  Emily baked and decorated a cake; Paula, Eli's nurse, brought flowers, card, and a cake; and Sasha, the kids babysitter, brought a pamper mommy gift basket and a card!  Thank you guys for helping end the day on a better note!

Wednesday, April 13, 2011

Quick Evening Update

We tried doing his meds over 31 minutes, which equals 1ml/each minute.  He still choked and gagged.  looks like tomorrow we will try over 45 minutes and see if that helps any.  He's miserable and oh so tired.
Here he is getting his meds (syringe push) and his breathing treatment.

GI issues

Eli's GI system has never been cooperative.  But seriously this is just getting ridiculous.  When Eli was 1st born we were able to give his meds/feeds by mouth.  Then he stopped tolerating so we switched to stomach.  Then he again stopped tolerating so we switched to intestines.  He has now been struggling with his J meds.  We had tried to up his feeds and his body wouldn't handle it.  He can handle 44ml/he but not 45ml/hr.  He was handling his meds and flushes.  Then a few weeks ago he started choking and gagging and not tolerating them.  So the doctors had us change things around and experiment with different ways.  His choking just keeps getting worse.  The GI today has decided that Eli can't handle ANY bolus, not even 3ml's at a time.  So now we are supposed to push all meds slowly over 1 hr.  So basically load them all up into a 60ml syringe and slowly hand push over 1 hr. 
We are running out of options to get medications into his body.  It's so frustrating.  I hate watching him get worse.  It's devestating.
He is also struggling to bounce back from his Atlanta trip.  He is constantly tired.  He is sleeping 75% of the day if left to his own ways.  During the times he is awake and playing he's back to taking frequent breaks and not having as good of control over his body and movements.  I keep hoping that he just needs 1 more good night of sleep between him and the Atlanta trip and that he will wake up nice and refreshed in the morning.  But so far that's not happening.
He had PT this morning and we were chatting about his development and she is getting concerned.  She isn't the concerned type.  She has always been laid back to the point sometimes of driving me insane.  So that just concerns me even more.  So much more information that we need.  So many unanswered questions. 
I wish life was cut and dry.  I wish things were easy. 

Tuesday, April 12, 2011

Tuesday Update

Bob is in KC and getting situated.  Yesterday was his 1st day or work and all went well.  He's back at it today.  M-F 8 to 5!  Super nice.  This evening after work he will also be looking at his 1st house.  Hoping to find something by a move in the 1st of June. 
It was asked why Bob didn't take Eli with him.  First Eli doesn't yet having nursing there.  Secondly Bob is living at a friends house in a small bedroom.  Thirdly Bob is working, Eli can't just go to daycare.  Fourth Bob can't just take off work everytime Eli has to go to a doctors appointment, even if Eli had nursing the laws do NOT allow them to drive the clients.  Eli is best here at home with his nursing and his home.  I will travel up for each of Eli's appointments right now.  We didn't expect Bob to find a job so quickly. 

We are all ok here.  Missing Bob alot.  Emilys foot is getting better, slowly but surely.  Jace is doing pretty well.  He got 100% on his last spelling test PLUS 1 of the bonus words!  Super exciting!  All the extra work this year is really paying off!  Ben is doing decent.  Yesterday he had some issues and took a bit to get him back on track.  Ari is doing well.  Busy as always.  Ari and Eli have started bounding and he's really enjoying her company.  She loves baby-ing him!  :)

I will try and get some pictures up this weekend.  The kids are all going to an easter egg hunt so I will take some pictures there!

Sunday, April 10, 2011

He's on the road

My household has gone from 7 to 6....atleast for the next 7 weeks or so.  I'm so hoping that these 7 weeks fly by.  There were alot of tears and I'm sure more will come. 
The kids and I are ordering pizza and just having a quiet lazy evening.  We will probably watch a movie.
Eli has been beyond exhausted today.  His nurse finally had to wake him up at 10am as he wasn't showing any signs of waking.  During the day he just keeps laying his head down.  I'm hoping he's just trying to catch up from the Atlanta trip. 
This is going to be one of my shortest blog posts ever as I'm just blah right now and trying to get my bearings.  I miss my hubby!

Saturday, April 9, 2011

Home from Atlanta

We are home.  Eli was pretty exhausted and sore the day after surgery.  We spent the morning laying low, and met some friends at the Atlanta Zoo in the afternoon.  Friday we packed and again laid low.  We flew home last night. 
The 1st flight from Atlanta to Denver had multiple issues, including wind and delays and stuff.  We finally got to Denver.  They loaded us on the plane at 8:15pm.  Eli was asleep and his O2 dropped.  We had to put him on his O2 but his sats wouldn't come up.  He was in the 80's.  Then we heard that the flight was delayed and we just had to sit on the plane.  Bob went and told the crew that we wouldn't have enough O2 battery life because of all of the delays.  The crew wasn't happy.  Alot of conversation began.  The crew wanted us to take a plane out the next day BUT refused to get our bags out from under the plane.  I kept telling them that without our bags Eli would have to be hospitalized because I had virtually no medical equipment with us on board because it was a TINY plane.  The other passengers on the airplane were in an uproar against the staff and ready to walk out and unload the plane themselves.  Finally it was decided that Eli would use his O2 during take off and landing and the airplanes emergency canister during the flight.  We finally got home around midnight.  Eli had to be on high with the O2 the entire ride home to stay above the alarm setting of his O2 monitor.  It was a long flight, atleast it felt like it.
Today he's been pretty tired.  Played a bit, slept alot. His incision is looking much better, still sore and red, but better.  Bob and I are beyond exhausted.
We now WAIT.  They ran 26 tests and the results tak 6-8 weeks. for the big announcement....
Bob has accepted a job in Kansas City.  He moves to KC tomorrow and starts his new job Monday.  The kids and I will join him after the school year ends.  It's going to be a long 7 weeks without him here.  We are super excited about the job, and about being a few minutes away from Eli's childrens hospital.  We are also super excited that he was only on the hunt for a job less than 3 weeks!  We are sooo blessed! 
The entire family has spent alot of time talking about this and we all agree it's for the best.  Bob will come back some weekends, and some we will go there. 

Ari had alot of fun at a friends house this week and enjoyed having a "twin" sister for the week.  The older 3 didn't have much change in their schedule at all.  Emily sprained her ankle sleep walking and ended up having to go for xrays and a foot brace.  Jace and Ben are their normal selves!

Today has been a day of family time before bob leaves tomorrow.  The girls are the unhappiest about him leaving.  Emily confides in Bob about everything and Ari has him wrapped around her little finger.  It's all about Bob for her.  It will be interesting to see how it goes.  With our new phones luckily we will be able to do video chatting but still not the same.

More updates soon!

Wednesday, April 6, 2011

Super fast update

Tiny is out of surgery and just got discharged.  They did a spinal block and gasses along with alot of local.  So no IV needed and no intubation as he want actually asleep.  So his breathing stayed stable.  Hes very bruised and sore.  his incision is glued shut since hes allergic to adhesives.  The hospital was great.  Super impressed.
We are getting his pain meds filled and them back to RMH so he can sleep.
More updates tomorrow.


We got into atlanta late monday evening.  Our flight was delayed out of denver due to storms in atlanta.  It ended up being a 12 hour trip.  Eli did really well and his oxygen stayed on the whole flight with no issues.  We got to the ronald mcdonald house and crashed early. 
Tuesday eli had his resting metabolic rate done.  He did really well with it.  There is a picture of it with this post.  Then we headed to dr shoffners office.  It was like meeting santa.  We talked quite awhile with him.  It was so nice talking to a doctor who actually understand what we are going thru.  Plans were made to add some additional tests to the surgery as well as setting all the anesthesia protocol.  Then eli had his pre surgery appointment at childrens at scottish rites.  Again lots of talk on following strict mh and mito precautions with anesthesia.
After all of our appointments we went out to dinner with an old friend of mine and her family.  It was so great to reconnect and spend the time together.  We are at cheesecake factory and ended up talking until after 10 pm.
This morning we slept in and had a lazy breakfast.  We are now at scottish rites waiting for vascular access, anesthesiologist, and the surgeon.  We will update today as we know more.
As always thank you to everyone for all the love and support.

Sunday, April 3, 2011

Flying High

"We're going on a trip on his favorite airplane with his airline approved infant concentrator, flying thru the skies with Little Eli.  Climb aboard, get ready for answers, theres so much to learn, Little Eli.  We're searching for a diagnosis, start the countdown, 5 metabolic testing, 4 specialist appt, 3 preadmissions testing, 2 spinal tap,  1 muscle biopsy.  ZOOOOOM!  Everyone to Atlanta, we are flying high, Little Eli.  Come on, lets go, we need you now, Little Eli!!!" (sung to the toon of Little Einsteins)

It has been a whirlwind of a few days.  We have been scrambling to get everything changed back over from driving to flying.  We've had to get kids taken care of, schedules covered, food bought and ready, and all of our bags packed.  Ari is staying the week with a good friend of mine and her 2 kiddos.  A friend of mine is covering mornings before school and my parents have the afternoons/evenings/overnights. 
We leave tomorrow morning.  We have to be at the airport at 5am and our flight leaves at 7am.  It's going to be an incredibly long day.
I'm numb right now.  I can't believe that we are finally here.  It's almost like a dream.  I'm nervous as could be.  I'm ready for this, just wanting it all to be over.  I want the answers and I want to move past this!
I will try to update as much as possible.