Friday, August 08, 2008

Friday Follies

Elaina had a good day today! She's back down to 1 liter of oxygen and her sats hovered in the high 70's and even 80! The PICU doctors tried to transition us to the floor, but the doctors on the floor were "afraid" of her. They said that she looked too blue and her acceptable sats were too low (we accept sats of 60 or higher...) and that she would continually scare the nurses. Can you imagine being afraid of this??


Or this?



So we decided to take a wagon ride around the PICU today instead.
Elaina even got to sit in front of the window and see the blue sky and clouds.
If she's really good tomorrow, the Nurse Practitioner said that we could take a walk outside to the Angel Garden for some fresh air! I'll take lots of pictures if we get to!



We're once again talking about the "H" word. I'm not going to spell it out because I swear I jinxed it last time. There are just a few more things holding us up and then we can get out the door. Home Health won't pay for the c-pap unless Elaina passes a sleep study. The pulmonologist came and evaluated her today and he said that he thought that the c-pap was helping her, but that in order for her to pass the sleep study he'd need to have her oxygen down to 1/2 liter or less. The doctors agreed to lower the O2 for the study (they want her on 1 liter minimum) so she's scheduled for Saturday night. He also told me that he had seen a lot of kids with Di George that had sleep apnea, and that they all benefited from having c-pap at night. He just transferred to Primary's from Denver. Hmmmm. Any other DiGeorger's out there that use c-pap? Anyway, we've changed her to floor status (in the PICU) and the docs wrote an order in the chart that I (Super-Mom) am in charge. The nurses do their assessments every 4 hours, but I get to give her all her meds, do her chest PT and suctioning, change diapers, and practice putting on her c-pap. Basically, I'm doing in the hospital everything that I'll be doing at home. They want to make sure that I am comfortable and confident in her cares to ease the transition.


She was really tired after her busy day of socializing and wagon riding, so she took a nice little nap. Notice the cute blanket? My sister Tricia and her daughter Kate made this blanket and donated it (along with many others) to Primary Children's. It found it's way to Elaina's bed and when I told the nurses that Elaina's cousin had made this blanket, they told me that we could take it home! Yay!

This is after her bath and with her c-pap on. She really loves to snuggle with her teddy bear. The c-pap puts her right to sleep too. Of course I'm sure it helps that she got her bedtime meds a few minutes before. I hope that she can have a restful night....


Thank you all so much for your encouragement and support. I try so hard to remain positive, but it's hard sometimes when the doctors keep forcing her condition down my throat. I won't know anything from Stanford for a few more weeks, so I'll post when I hear something. I know that through our Savior anything is possible and that He has a plan for Elaina. I am so grateful for her and her life. I know that if I live every day to the fullest and fill it with joy and happiness I will never regret the time I spend with my sweet angel. She remains so precious to me!! Please know that your words of kindness and prayers mean so much to me and help give me the courage to continue on this journey.
Love,
Hollie

15 comments:

Mami Adame said...

Hollie, I admire yours and Elaina's strength. I'm so sorry this roller coaster ride you are on has so many unexpected ups and downs. Keep strong, lots of hugs for both of you!

carolyn q said...

I am so glad that Friday was a good day and that she was able to go for a wagon ride and get out of that bed.
I had a really good time going to dinner with you the other night and I could see how much you enjoyed it too.
Yes, lets not say the "H" word but we all know that we are thinking it!
Love Ya. . .
Carolyn Quigley

Vaeh's Blog said...

I agree, lets not jinx anything! And what wonderful sats! Did you tear up whn you saw 80?! I would have.

Sounds like you're doing everything you can... just keep enjoying & loving that beautiful little girl!

Much love & many prayers!

Kelly said...

She looks adorable! What a great day! Stand back... Super Mom is in charge! I bet that feels great to finally be taking care of your precious little girl! Go Eliana! Go!

Kathy said...

I'm just going to start calling her "princess blueberry"...she's so darn cute...but, we all too understand how the floor nurses can be scared of these little ones! (it's almost comical!)
That's awesome that she was able to take a wagon ride...what fun! And you always have her looking so snazzy with bows and all!
ARE YOU ready for all that equipment at home?? We just lived in our living room for the first few weeks until we got the hang of all of it. We haven't tried cpap before...but, I do know that it benefits Isaac to have O2 at night...so, I can only imagine how wonderful the cpap must feel to her (let her little body rest).
You are doing a wonderful job...keep it up!!
(I finally send that pacifer holder out--sorry, when I went out of town...my sweet hubby couldn't find it)...
Lots of love to you guys...
take care..
and thanks for the updates!
Kathy

ssbiasutti said...

Hollie,
Elaina is looking pretty good!! She is adorable in her little wagon! It does my heart good to hear that she is doing better and you are once again talking about the "h" word. I'll come find you in the next couple days and we should go to lunch or something. You are such an amazing mommy and you've been a great friend to me!
Love, Sara

Auntie Liz said...

She is so beautiful!
Sending many hugs, kisses and prayers.
xoxoxoxoxo
Liz and John

Djinni said...

I am so glad she went on a wagon ride and got to see the blue sky. I think about her often.
I dropped off a music CD on Thursday while you were at parent hour, I hope you and or Elaina get a chance to listen to it. The Artist David Lanz has inspired me so much I thought you would enjoy listening to it. I've noticed that a lot of ICU nurses like it at many hospitals. Sorry if it is mostly sample clips, It was the only legal way to copy music without breaking the law. If you like it he has more free downloadable music at his website which is www.DavidLanz.com
Anyway I am constantly praying for you and your kids. Love, Djinni

Wendy said...

Just wanted you to know that I continue to think of you and keep your sweet Elaina in my prayers. She's so adorable...such precious pictures of her in the wagon! I'm sure it feels good to walk her around, even if it's still in the PICU!

Heart Hugs & Prayers,

Wendy (& Emma, too!) ~ TOF
www.caringbridge.org/visit/emmanicole

Vanessa said...

I'm so glad you got to take her on a wagon ride. She looks so happy to be out of the room. I can't wait to see pictures of her outside!!

We haven't experienced the CPAP so I can't offer any advice on that topic but I hope you get someone who can.

You really are a super mom and you will do great when you get to take Elaina home. I'm always praying for you guys.

Love,
Vanessa

Ryan & Brytten Pettit said...

COME AND VISIT ME, I MISS YOU!
RM#3079
HEART HUGS- BRYTTEN

bmann said...

It was nice to meet you the other day I wanted to sit down and talk with you but it just wasn't the greatest timing. Elaina looks so cute on her wagon ride. I hope she gets to go outside for a ride soon! We think about you guys a lot.
Diane Mann

Mina said...

I'm so glad to hear Elaina had a better day. No we won't jinx her, but I hope the sleep study gets you the results you need to be one step closer.
Mina and Bilal (ToF)

khanfamilyoffive.blogspot.com

Gourley Family said...

Wow, you have been busy! We will be up tomorrow and will stop by to see you (if you are not too busy being Mom,I love that you are in charge!)
Heart hugs,
Emily

The Portas said...

You're such a good mama. You show those nurses what's up and how to take care of that precious little girl. It's so funny to me how different nurses on the floor are and how afraid they are of heart babies. They're nurses, right? Hmmmm. Anyway, you are doing such a great job and it looks like the prayers are paying off because that little girl is so beautiful and precious and it looks like she is ready to ditch that place.

Keep up the 80 sats!!! xoxoxo