Tiny's got wheels!

Today was Eli's wheelchair appt.  We were there for 3 1/2 hrs.  They got it all fitted and adjusted and got his tray made.  He absolutely loves it and was happy as could be going down the hallway and reading a book on his tray.  He's wiped out now and has been asleep for quite some time and probably will be for the rest of the night. 
The pharmacy has had an issue getting one of his meds sent out and therefore he is completely out.  It's of course his GERD medication and he's choking and gagging even worse than normal.  Hopefully they get it compounded and out here quickly tomorrow.  His upper lungs still sound a bit yucky, mostly on the right.  We are keeping a close eye on it all.

tiny man checking out his new wheelchair

Exhausted after his appt

Sound asleep after his appt

Here is the picture of Bob and I meeting Josh Groban!

We are still here!!

I apologize for being MIA these last 10 days.
We have been moving.  I spent a week packing and started getting a bit sick.  I thought it was allergies, finaly went to the doc as it was getting worse and worse.   Come to find out I had pneumonia.  I got so weak I could hardly move, and breathing was a struggle.  Lots of meds and rest later I'm somewhat better.  Bob spent a few days in town helping finish up all the packing.  The movers came this last Thursday and all of our things are now in KC. 

During the move Emily got sick as well.  Her asthma went out of control.  The school called saying her O2 was 86.  Rushed to the doc for tons of breathing treatments and steroids.  It wouldn't come above 95.  The next day the same thing happened.  They doubled the breathing treatments and steroids.  Still stayed around 95 to 96 for days.  She is finally able to breath without having to work so hard and her O2 is hanging out around 98.  Much better.  She's hoping to try school today as she was out at the end of last week.

My little man.  He's "stable" at the moment.  It's been a rough time for him.  His O2 has been suprisingly pretty good, but the last 2 days his upper lobes have sounded junky.  We are hoping with agressive suctioning that will keep it from settling farther down in his lungs.  He's running a bit of a low grade, but not enough for major concern.  His heartrate has been strangely low for him, which we will be calling the cardiologist on Monday.  With his heart issues and this dang calcified leason in his heart, we report any changes and let his cardio team decide what next!   He has struggled the last few days with dehydration.  He can't handle any heat at all.  The air conditioner has had to be turned down low to allow his body to be able to keep itself cool enough.  We are pushing as much free fluids as possible and as of last night he was finally peeing again.  His new meds to help lower his secretions don't seem to be working effectively enough.  A call is in to his pulmonologist to find out if we can slightly up the dose.  This Tuesday Eli's wheelchair comes in.  He will spend a few hours at seating clinic getting all the final adjustments done!  We are excited to give him this opportunity to be up and moving around even when he's to tired to crawl on his own.  Eli has also been trialing a new car seat this week.  He struggles to breath well in the car and will routinely drop his O2 levels to 71.  His pulmonologist suggested he meet with a therapist trained in carseat positioning.  She has loaned us a seat to see if we can get some better positioning in the car.  He has done a bit better with the new seat but is still dropping into the low 80's.  Luckily with the move coming up soon he won't be in the vehicle as much, but will still obviously be in there.  We are hoping soon to find something that will make it easiest for him to breath!

This past Saturday was an AMAZING night.  My mom got Bob and I tickets to see Josh Groban in concert.  It was my birthday present from my parents!  Wednesday evening the phone rang and it was one of the hosts from our local radio station.  They have followed Eli's journey (they are the ones who arrainged for Santa to come to Eli, since Eli couldn't go to Santa) and wanted to do something for Bob and I.  They had arrainged back stage passes for us to meet josh groban and get pictures and autographs!  I was beyond excited!  Saturday evening we did get to meet him, and even got to chat with him about Eli and give him one of Eli's cards.  He was an amazing guy and it was such a great experience.  We were enjoying the concert and listening to all of the amazing songs.  Next thing we know Josh is talking before going into his next song.  He was talking about meeting us backstage and our little mans journey and fight to stay strong.  He dedicate a song in front of 6000+ people to our little man!   I curled up into my husband and cried as I listened to him sing for my tiny man.
No recording was allowed during the concert, but I wanted to share a video of the song.  Here is the link to view the video and hear the song.
http://youtu.be/XL71Za0Kpqg

I promise to keep up with blogging.  The kids and I are at my parents for this week and we officially move to KC friday.  Our life is changing, we have all vowed to go into this and to stay strong for our little man.  Sometimes I can't believe this is all happening.  We are leaving our home, our family, our friends, all to be close to the childrens hospital.  Who moves for a children's hospital?!  Parents of medically complex kiddos do.  I know it's not going to be easy, but I know we are doing what is best for Eli.  I wish I could be as strong as my little man.  Watching him get the last bit of energy to push himself into someone's lap.  Everything he goes thru, smiling as he goes.  He wakes up hooked up to tubes and machines and looks up at me and smiles.  He's amazing and is constantly teaching everyone he meets the true meaning of life.  We are constantly told how much Eli and our family have touched people, and we feel we have been blessed to have met so many other amazing people thru Eli's journey!

Pictures soon!  I have to find my camera cable!

Eli's struggle

It's been a rough week.  Eli started struggling alot more....AGAIN.

We finally got the call from the Hematologist.  His hemoc doc, cardiologist, and ECHO radiologist all met.  The spot in his heart is no longer a blood clot, it is a calcified leason in the left atrium.  This is why it is growing.  He is off of the blood thinners as they will no longer help.  Hemoc is going to do a full work up in 32 days to find out if he has a long term blood clotting disorder or something underlying that has caused the blood clots or if it's simply from the port.  Now cardio is in charge as this is specificially a heart related issue at this point.  Nobody is sure quite yet what is going to happen.  He will have another ECHO in 4 weeks.  If it continues to grow that is going to be a HUGE issue as it will block the flow of blood in his heart....

The new allergy meds don't seem to be working.  Last night was one of his worst nights in I don't know how long.  He started dropping his sats at 1am.  I would rub his back vigorously and he would stay at 77 for his O2.  I ended up having to put him on O2.  He still consistently dropped his sats into the low 80's for over 4 hrs.  He was so mucusy he was having trouble breathing.  He was coughing and choking.  No position seemed to help him at all.  His heartrate was running between 175 and 194.  By this morning he was miserable.  He has slept a huge chunk of the day, and his O2 has still run low for his normal.  His HR has still been running a bit high.  I kept suctioning but it's to far down to get it.  I put a call into the doctor 1st thing this morning.  Lots of discussions with docs and nurses.  His main doctor says that his secretions are just out of control and he's not handling them well, especially at night.  The more secretions he has the more it wears him out trying to keep them under control, which means he handles them even worse.   If that makes sense.  It's an endless cycle.  His main doctor has ordered catheters to suction him and wants us to do that as often as needed.  If we can't clear it with the cath suctioning at home we need to take him to the ER.  His doc is already discussing the need to order overnight nursing to help take care of Eli at night since that is when he struggles the most.  I'm hoping it doesn't come to that. 

I'm really struggling to watch my little man struggle with things he once had no trouble doing.  I remember a day where he could curl up and nurse.  It seems like such a distant memory.  It's gone and so many other things that once were, are gone as well.  In the beginning they would tell us that each change was just temporary, that he would get past it and gain that skill back.  It's not so.  They know it and I know it.  They have stopped promising those kind of things. 

I'm scared.  I'm so very scared.  I don't know what to do.

Ridiculously fast update

We are home.  We got in early this morning.   All the kids went to school and I got everything unpacked and some laundry done.
This afternoon Eli fought his nap so hard.  Tonight he went to bed and promptly began screaming.  His HR is of course thru the roof.  He has been quiet for an all of 5 minutes and he's already dropped his O2 below alarm setting twice.  It's going to be a loooong night.
I will get pictures put up tomorrow!

Quick Sunday morning update

Eli's hemoc pa called. His echo showed that his blood clot went from 3 x 3 to 3.5 to 5.5 which is definitely not what it is supposed to do. This means that the lovenox isn't working any more. She will meet with eli's hemoc doc Monday and they will make a plan and call us back. I wish my little man could just catch a break.

Ben is doing a bit better again this morning. He has eaten more and more and is consistently drinking. He's still got a lot of sensory overload issues but getting better.

Happy mothers day to all!!!

In KC

We are in KC.  We got here yesterday.  As of yesterday morning Ben was still struggling alot.  He wasn't able to stand up still and was hardly drinking.  We all loaded up and headed to KC.  He drank some sips of pedialyte on the road.  When we got here he actually had a bit of energy and ate some applesauce and drank some more pedialyte.  He was moving slower, but atleast moving on his own.  His sensory issues are in major overload.  By last night he all of a sudden had a meltdown and freaked out for food and drink.  He ate 2 mini cheeseburgers, drank an apple juice and a whole cup of water.  Last night he didn't have any nightmares.  This morning he's having trouble staying warm and ate a few bites for breakfast, but he did drink his juice.  Hoping to see more improvement as the day goes on.

Eli had his pediatrician check up yesterday as well.  His ears aren't still infected.  His allergies are so out of control that there is a ton of pressure behind his ear drums which is causing them to hurt, as well as causing them to be flat on the tympanogram.  The doc put him on allergy meds and is hoping that makes a difference.  So that is 2 new meds in 2 days.  Lovely.

We will spend the rest of the weekend in KC.  I feel better being closer to the childrens hospital right now as we make sure Ben is solidly on the road to recover.  The kids and I will probably head back to Wichita Monday morning assuming all is well.

More updates soon.

Very sick Benjamin

What a day.  Benjamin started getting sick yesterday.  He ran 102 fever and wouldn't move and slept.  He barely drank.  Lots of pushing to get him to drink, same again today.  He was so weak he hadn't moved from the couch at all.  He was sleeping again and next thing you know he's running screaming and grabbing his stomach yelling about flashlights and monsters and pain and needing meds.  His heartrate was high.  He was shaking so bad that he couldn't hold a cup.  Immediately called the doc.  They were concerned about appendix so had me rush him in.  He couldn't walk so I had to carry him.  He couldn't even stand on the scale so he had to be laid out across the baby scale to get a weight.  Within minutes they had an IV going.  Doc was checking him over and looked at his throat.  When she swabbed it, it was literally bleeding.  Ben has strep.  Apparently in young children it presents with high fever, severe stomach pain, shakes, sometimes delusions, and tons of other weird things.  Ben got 1000 mls of IV fluids, plus a massive shot of penicillin.  He was so cold and shivering we had to keep covering him in blankets. We were there for hours.  His fever crept back as we were leaving the doc.  His pediatrician literally carried him out to the car.  We are home and he was carried back to his place on the couch.  He is hardly drinking again and sweating alot with the fever.  We haven't seen a drop of pee in over 30 hrs.  It's been decided that if he isn't better by morning he will be taken to the childrens hospital in KC and admitted.  He's super sick and it's really scary.
As they were getting his IV going he was screaming at them "pretty pretty pretty please don't poke me" " pretty please stop" "I wish this was a dream" "I wish I didn't have to have 2 pokes" "I wish there was no such thing as sick"
The one that broke my heart the most was after they got him hooked up to the IV and he looked at it and said "I don't want to be like Eli".  He's scared that because he has to have a tube that he will be super sick like Eli.  Benjamin understand how much Eli suffers and that the quality of his life is hard.  His pediatrician, nurse and I spent constant time at his side to help him not be scared. 
He still doesn't have enough energy to sit up yet, so it took 2 people to get his shirt off...1 to sit him and hold him up and 1 to get it off.  I will update more as I can.  It's going to be a long night pushing fluids and keeping track of all of his vitals.

Home from KC

We are back in Wichita. 
Tuesday:
Eli had feeding therapy.  He was a mess.  I discussed with her his gagging issues and she wasn't quite understanding.  Next thing I knew Eli had decided to demonstrate exactly what he does. She was like holy cow, and it made her nervous as she was grabbing him out of the high chair.  She said that it is definitely very concerning.
Then we moved onto seating clinic.  One of the vendors considered changing Eli's wheelchair that has been ordered but I wasn't happy with the changes he wanted to make.  So the chair stays the same!  It has been ordered and will be here in about 2 weeks!  We also met with a doctor in charge of the rehab dept.  He was very informative and it gives us a good idea of what next in that dept.
Then we headed to dermatology.  She thinks she knows what the issue with the weird rash is and wants us to come in as soon as it comes back.  It only shows up when he's sick so luckily it isn't there now!  :)
He then headed to the audiologist.  Hearing aids are all working well.  They did a tympanogram and both eardrums were completely flat.  Most likely because of fluid.  He will be checked by his pediatrician on Friday.
Tuesday evening was Eli spending more time choking and gagging and struggling to keep his sats up.

Wednesday:
Eli had his ECHO 1st thing this morning.  He was choking and gagging so much in the waiting room that people were getting concerned.
Then we moved on to Neurology.  This was our 1st neuro appt at CMH.  We were very impressed.  He met with me for about 1 1/2 hrs.  He agrees with the Mito.  He says that he believes that Eli is functionally deaf.  He believes that the mitochondria have caused road blocks in the neural pathways so they aren't allowing sound to go thru and be properly processed in the brain.  He also agrees with the hypotonia.  At this point he says it's hard to tell exactly what Eli is capable off.  He wants us to continue all therapies and see what Eli can gain.  He did say the longer it takes to gain it the less likely he will ever be to gain it.  So really it's a waiting game. Which no parent wants to do.  He is anxiously awaiting all of the paperwork from Atlanta.  He also had his social worker get the referral process started for Eli to get major therapy, and also to get the family going with the Deaf school in KC.
Then we moved onto Pulmonology.  We discusssed the choking alot.  She believes that they hypotonia, weak swallow, oral aversion, and tracheal laryengal malaysia are all working against Eli to make it so hard for him to swallow.  Everyone agrees that the problem is with his own secretions.  First she is trying him on some meds to help lower the amount of secretions.  We also discussed his sats still dropping with CPAP, so we will most likely be adding O2. We also discussed his issues with being in his car seat.  Then in true Eli form on the drive him he dropped his sats to 71!!!
So none the less we are home now.  The older 4 are super excited to see us.
Emily has finished all of her state assessments and did great on them!  She also scored 105% on a spelling test! 
Jace also got 105% on a spelling test, the 1st test where he has gotten everything including the challenge words!
Benjamin had his school program today and then came home from school and promptly fell asleep. My dad checked his temp and it was 102.  He is super tired this evening with a bit of a temp and super sleepy.  He says his legs hurt.  Hoping he feels better in the morning.
Ariana is the princess as always.  She has been busy hanging out at home and playing.  Talking up a storm! 
I am ok.  Exhausted.  I seem to have some major allergy issues going on which has caused a cough.  No fun.  Hopefully my allergy meds will kick in fast!

More updates soon!

Monday in overland park

It's been a long few days. Eli is struggling so much with his secretions. We are running out of ideas on what to do to help him. I'm really looking forward to these up coming appointments and hoping to get some answers. Last night he was trying to crawl up a stair and fell and his glasses broke and cut the side of his face next to his eye. He wasn't thrilled.
We started the morning with a doc appointment. Not much new info there. Then I went to the nursing agency and met with the team up here in overland park. Eli and I also got the dme transferred. Then we met bob for lunch at his work. Afterwards I picked up all the papers to get the kids enrolled for school next year. I'm so relieved to have a house up here and to be getting everything situated.
More info soon.