Wednesday, November 5, 2008

We are back in Children's Hospital this week:(I have fallen off the blog updates because it has been chaos around here lately.  The quick version is that Lilah started running a fever last Saturday night.  Because of her fragile condition, her pediatrician wanted her checked in the ER.  Many tests, pokes, and hours later, we came home with a "it's a virus. her heart looks good" diagnosis.  Headed to the pediatrician Saturday, as she was still running a temp.  He gave her an antibiotic shot, she had some terrible reaction to the pain (a vaso-vagal response?), turned gray, and Lilah and I headed to Children's via ambulance.  We hung out in the ER to make sure that it was just a reaction to the shot and she was cleared to go home.  Monday, back to her doctors office (in case you haven't picked up on the trend, her doctors keep very close tabs on Lilah) where the O2 monitor reported oxygen saturation levels in the low 80s (you want 100).  So, because she was dependent on the oxygen, we had to be admitted to Children's and travel by ambulance.  

Post chest xray, lots of labs, echo, and EKG...they still say "it is/was a virus".  Apparently, her little body just got worn out from fighting it and is having a hard time oxygenating her blood.  We are in the process of weaning her from it and are hopeful to go home soon (she has to have at least 1 night O2 free for release).

We are doing okay.  This has definitely not been as hard as last time (although the second ambulance ride did get to me:( ).  I'd say we are feeling emotionally tired and missing having our family together.  There is sadness and loneliness that comes every time we are reminded of the hard road ahead.

Lilah looks great, though.  She is smiling today and eating well.  She gives the nurses and lab workers her "opinion" (which is negative!) on procedures, which thrills me to no end.  It means that despite this step back, she has made many steps forward from that terrible day when they told us she was in serious heart failure.

We continue to be thankful for God's goodness and hopeful for the plans He has for her precious life.  As always, we covet your prayers.


11 comments:

Jessica said...

I am so sorry to hear this, Gina. I hope for continued good progress and will pray for such. xoxo

Temple Tidbits said...

Gina, we continue to pray for healing for Lilah. We are also praying for new mercies every morning and for God to continue to hold your family in His hands.

Elizabeth Myatt said...

Praying for you, loving you, and missing you.

daisyeyes said...

Oh Gina, I'm so sad for you...always sending up prayers for you and for your family.

Our Princess said...

We're praying for you guys! Rest in Him!

David Burch said...

thanks for the update Gina. We're always praying for you guys. miss you!

Anonymous said...

Gina,
I am sad to hear that the hard journey continues, but encouraged and humbled by your faith in our Amazing God. He is clearly with you every step of the way and it is evident in your words, despite the weariness I know you all feel at times. Thank you for sharing your journey, it is edifying for those of us watching. May God continue to carry and comfort you and (we are praying) HEAL that precious Lilah! We are praying.

Love, Beth H.

Johnson Party of seven! said...

So sorry! We were in the ER on Saturday too! We left around 6. Same thing-, "its just a virus". Hutton's O2 levels were low on Tuesday night and she had to be on Oxygen all night long. She is coming around the corner now. Praying that Lilah is too! Hang in there!

Jill Johnson

Anonymous said...

Gina, you are such a brave, strong, amazing mother. I think of you often and pray for you just as much.
Love you,
Megan

The Leonards said...

Y'all are all on my mind constantly. I pray Lilah's little body will be well enough to come completely off the oxygen soon, and that Lilah, you, and Paul will be able to rest well this weekend...hopefully AT HOME:)

notes from em said...

praying, praying, praying.