Sunday, August 03, 2008

Life in the PICU....

Another day in the PICU, I seriously feel like I live here. I counted, and since this admission (a mere 80 days ago!) we've been in the PICU for 55 days!!! I need to sit down and really figure out how many days we've been home verses the total number of days in the hospital. I'm sure it would be enlightening....

Elaina started out by having a rough night. She had another de-satting episode, and this time it was decided to put her back onto the c-pap. Needless to say, I was very discouraged when I got in the room this morning. Fortunately, she didn't need the c-pap for long, and by mid-afternoon she was back onto the high-flow. She's spent the majority of her day just sleeping (and being snuggled by Mommy).

Do you see the cute blanket???? BUGS! They're lady bugs, but they could be "turtle" bugs if you use your imagination. Here's a closeup of the fabric. I really must look for it and make my own for her to have..... (or if someone else out there can find it, let me know and I'll pay for it!)


Oh-my-goodness! Too cute!!! :)

Okay, that was a little detour... After talking to the medical team today it seems that we were right in thinking that the diuretics were the culprit this week. It seems that this is what happened:
Too much diuretics, they dried her out and her heart rate skyrocketed.
All diretics were stopped, her fluids were increased and her lungs started to get wet so her saturations went down.
Now, we're trying to find the "fine line" of diuretics for her. She obviously needs some, but not the amount we were giving up through last week. It is going to be a balancing act and it will take some time to get it all figured out. We also need to get her electrolytes stabilized. Her potassium has been too low and her sodium is super high (this contributed to the high heart rate). She's still having fevers, but so far nothing has cultured. So funny, fever is what got us admitted on May 16th and in the 80 days we've been here we haven't been able to really find an answer to that. We may never know, and she may go home with unanswered fevers. No word yet on when they might send us home now, we'll just have to wait and see how Elaina does.

I was able to attend church at the hospital this morning, and it really lifted my spirits. It is such a wonderful blessing to be able to take time to worship the Savior. I am so grateful for all the blessings that have been bestowed on me and my family. Just one month ago I was told that my daughter would not survive and I was asked to make a choice that could have ended her life. I turned everything over to the Lord and have been blessed with a month of being able to hold her, kiss her and love her. I am so grateful for all that I have, and for the tender mercies that have been shown to us.

5 comments:

Mina said...

I heard about precious Elaina from Tina and Vaeh's blog. I'll be keeping you in my thoughts, and praying for Elaina.
Mina and Bilal (tetralogy of fallot)

Mike and Rebecca said...

I hope they find the real answers to the fevers. I think her pictures of her on Sunday look much better, she is so adorable with her eyes wide open. Please know you're family is in our thoughts and prayers.

Hugs,
Mike & Family

Vaeh's Blog said...

Poor little bug!! What a story she'll have to tell when she's older! "I'm tough, so don't mess with me!"

Glad they're getting things straightened out & Elaina back on the path to going home! Guess she wasn't ready to leave that round the clock attention in the hospital yet! Oh, these kiddos... its always in their time:0)

Still praying...

Love & Hugs from Ohio:0)

Isabella said...

My heart is breaking for the both of you. I hope and pray and very soon you get the answers and Elaina gets to go home. It seems that Elaina and Isabella are so similar. We fought so many unanswered fevers for the first year. She couldn't tolerate being dry at all!! It was a constant balance game with being too dry or too wet. She was so fragile that any little thing would spike her temp and her heart rate.
You and Ben and Elaina are in our constant thoughts and prayers.
Megan

Colin's Blog said...

Lots of prayers being said for Elaina. So many setbacks but, she's still fighting!! It's the horrible vicious cycle for these heart babies-being too dry or too wet!! We still haven't figured out the exact combination for Colin but, we're getting there and Elaina will too!!

Melanie & Colin