Friday, March 6, 2009

Roller Coaster Ride - and a Skater Moose!

Wow!  Is life full of ups and downs for us lately.  Mostly downs....I used to love roller coasters...but when I hit 30 they started making me sick.  But, honestly, nothing is worse than the feeling I have lately dealing with my poor son feeling so miserable!

Wednesday, Eli started having issues again.  Wednesday night he hardly slept...then he woke up at 2:35 am....and stayed up!  It only got worse from there.

Thursday sucked!  (Sorry, just keepin' it real, folks.)  I had to start giving him Ativan again, to calm his body down as it was just crazy.  We took him to his developmental pediatrician, Dr. Walker, on Thursday afternoon.  We came up with a new plan for feeding and medicating him.  We are now on a slow drip feed for 20 hours a day.  Since it would be almost impossible for Eli to be hooked to a line while awake....we are using a syringe and a kitchen timer to put 10 ml of food in him every 20 minutes!
During nap times, and at night, I will use the pump.  We are also keeping him on a low dose of Ativan round the clock, so he can stay calm enough to eat, digest, and sleep....which will allow for more food.
He is eating about half the amount of food he was eating 5 months ago!  We are going to work very slowly at builiding up the volume, as he can tolerate it.

Dr. Walker is consulting with other doctors who have seen Eli to see what the plan will be for a more permanent solution.  Maybe a GJ feeding tube?  (Inconvenient, because only Seattle can place and maintain it!)  Possible Nissen surgery?  (YUCK - surgery scares us!)  We just aren't sure!

I've been holding him for 1 hour and 35 minutes this morning...and he will not go to sleep!  He is relaxed, because he is drugged, but he's still moving and jerking just enough....that he won't/can't take a nap.  I hope he can soon....his body needs a rest!

When Eli was in the hospital, I left a comment on my favorite blog My Charming Kids.  Well, one of her kind readers saw my comment and read my blog and starting leaving "we're praying for you, get well" messages for us.  How touching! 
Unfortunately, the internet connection in our room died Friday...and I wasn't able to check my blog comments or leave any updates before we left the hospital.
On Saturday, when we got home, and I was finally able to post...I found that this very nice lady had left a gift for Eli at the hospital.  I had to leave her a message that we weren't able to get it.  And guess what she did?
She said, "My son Riley really wants Eli to have this gift.  Can I mail it to you?"
And so, on Wednesday, Eli received his package from our new {generous} bloggy friends in the Seattle area.....Riley and Catherine!

ELI:  "LA, LA, LA, NOT LISTENING..."  hee hee

Catherine and Riley,
Thank you so much!  This moose is adorable!


Catherine said...

The Study Abroad program I work for did a nation wide Share A Bear Event in January. The day I saw Eli was the same day I had to deliver our groups bears to th RMH of Seattle. My husband and son had specifically made this one and we thought of Eli.

My son, Riley, saw the pictures of Eli. He said Eli looks like him - and he wanted to know if he can come over for a playdate. Riley was very happy to see Eli with the skater moose!

I hope you enjoy it! You're still in our prayers.

Anonymous said...

Amy honey I love you! And Eli Aunty Loves you too! I Love the moose! I am praying and praying. hugs!

Anonymous said...

The moose is VERY cute, as is Eli.

Hope he has gotten some rest by now.

I read MCK, too.