Saturday, June 6, 2015

When life gives you lemons...go to the Janeway :)

June has not been an easy month for Jake so far...and we're only 6 days in.  Jake gave us another reminder of how precious our "normal" days are - the days with no hospital involvement.  The bug that Jake has been struggling with for a couple of weeks intensified on Thursday/Friday, and led to Jake being taken to Emerge because of low oxygen saturations.  Jake always has low oxygen saturation (100 is normal.  Jake lies in 80-90 range most days), but when he gets sick they can really dip and then he needs oxygen assistance for a little while.  On Thursday night they dipped to 68-72, then when we were ready to bring him to emerge they recovered into 78 range.  Friday they dipped again - 66-74 range, so I called cardiology then packed him up and went to Emerge.  After 5 hours of trying various things to see if they would help, iv, bloodwork, nose swab, and blow by oxygen....Jake was admitted to the Janeway for observation overnight.

After some oxygen, and IV antibiotics Jake seemed to rally - and held his own for the rest of the night with no oxygen required.  That meant he could go home today! It was his shortest hospitalization to date, and I'm so thankful for that! Thanks so much to Poppa for all his help - it's hard being in two places at once when Georgia can't be in Emerge or the Isolation area with Jake.  We couldn't have managed it without you.  Jake was so happy when his Poppa came in - with new dinkies for him to play with, of course.  He fell asleep in his Poppa's arms soon after being admitted.

Jake has a follow up on Tuesday to get his blood levels rechecked (both white blood cells and platelets were low), and follow up with the admitting pediatrician.  He's on stronger antibiotics here at home, because we still don't know if it's viral or bacterial.

As you can see...Jake is happy to be home :)

It's funny the moments that stick in your mind...since we've been home I  keep having this flashback.  When the nurses were attempting Jake's IV (Jake is an extremely difficult poke), I was trying to comfort him while holding his arm in place.  It was too hard to look at his face, so I looked down at the table and noticed that his ear was filled with tears.  It was a pool of tears - my heart broke.

The nurses always say it's harder on the Mom than on the kid, but I don't know.  I think in the case of a kid like Jake who is always at the hospital and frequently being poked and prodded - it's harder on them.  My prayers lately have been focusing on Jake's mental health and strength - I don't want him to be a child who fears everything, who expects the world to hurt him.  That's not right.

Tonight as I try to calm my mind to go to sleep, I'm rewriting this verse for Jacob.  And for Me.  And for Georgia and Jon.

Psalm 18:2New International Version (NIV)

The Lord is my rock, my fortress and my deliverer;
    my God is my rock, in whom I take refuge,
    my shield[a] and the horn[b] of my salvation, my stronghold.

The Lord is Jacob's Rock, Jacob's Fortress and Jacob's Deliverer;
my God is Jacob's rock, in whom Jacob takes refuge,
Jacob's shield, and the horn of his salvation, his stronghold.

The Janeway telethon is currently underway, and that hospital has played a crucial part in Jake's journey.  Cardiology, Dietician, Occupational Therapy, Audiology, Gastrointestional, Perinatal, X Ray and Cat Scan, Emerge....I don't know where Jake would be without them.  Especially Dr. T - we are so thankful for you.  

To make a donation to the Janeway, click here.  

Check out this year's theme song...Bounce Back...and be warned...I cried...

1 comment:

  1. Hi I have a 14 going on 15 teenage boy. He also has a DILV. He underwent the Norwood Procedure, completed in 2003. He grew like any other kid, except with some physical limitations, mostly slower than other kids in P.E, and seemed normal to those who did not know. I just wanted to share with you. I thought this would encourage you. I can give you more details if you like, of course every kid is unique, but if it helps you, it would be my pleasure.