Saturday, November 22, 2008

Withdrawl.....











This could mean a few things in Princess Lindsay's world.......when I don't post for a few days, this is what her stalkers go through and this also means that Lindsay is going through this because of her drug addiction! Yes, she is showing signs of withdrawal by having spiratic fevers, throwing up and being very agitated. She is FINALLY off all sedation medication as of yesterday and is just being given single doses intermittently. So far so good and she had a fantastic day of rest. The only time that they gave an extra dose was tonight around 9pm. What was even better about that is that this time it didn't come with a fever. The last few have, so that is also fantastic! She is getting there and hoping to start the Rituximab early next week. She has also kept down most of her feeds and is up to 65 cc's every two hours. Will probably have to increase soon because she is really starting to get her appetite back. It is so nice to have our baby back again. She is smiling and starting to play a little. She has physical therapy 3 times a week now because she has been in bed for 7 weeks! YIKES! However, the therapist said that she is actually doing very well and isn't overly concerned that she will have a problem progressing with her motor skills. What a tough little cookie!

I have included some pictures of her from the last few days and also one of Meg, the nurse for transplantation services. This is when she was calling UNOS to list Lindsay for transplant. I know, kooky, but I had to have that picture because it was a huge deal! Andrea, and for those of you who might understand, she is listed as a 1A. This is the highest category because of her being in the hospital and on a milrinone drip. So, that increases her odds but will really matter is that we get rid of the antibodies. So, next step, Rituximab next week.
Love to each and every one of you!

Love, Suzie
PS Carlee and Connor are stable and came through surgery very well. The both had their hemi-fontan's today....Connor's was waaay unexpected at only 2 months old!!! But Dr. Bove thought about it overnight and decided that that was what Connor needed. So far so good. The next few days are critical, so please keep them in your prayers.

12 comments:

dani said...

oh those eyes...so amazing. i am so glad to hear our princess is up and playing! any drama queen smiles yet? i miss those:) we are thinking of you all the time and are sending all our love from oregon.

love...dani

Anonymous said...

Glad to hear that Lindasay is awake...and playing too :)
We know a few families from U of M awaiting new hearts, and we will definitly be including Lindsay in our nightly prayers.
Another family whose carepage I follow(But do not know personally)just found out yesterday that their daughter will be listed for transplant. Her carepage is SofiaLaPres...maybe you will see them around the floor this weekend. We will be up there next Tuesday for Braeden's echo and cardiac check-up...we will stop in then and say hello. Hang in there...

~Stephanie and Braeden

The Simmons Family said...

OH YEAH 1A!! I was praying that she was a high priority on the list... relief!! Lindsay looks amazing!! I just want to kiss her little cheeks and play games with her! I met one of the echo techs from UofM, she just moved to Phoenix a couple weeks ago and was doing Owen's echo at the hospital and she knew Lindsay. Small world!

I'll drop in on Connor's carepage and give them well wishes. We also had an unexpected and early Glenn and it was frightening!!!

Heart Hugs from AZ and hopefully the withdrawls will get easier!!

Anonymous said...

Look at those chubby little cheeks... I just want to squeeze them(softly of course ). Good to hear she's keeping her food down, she sure doesn't look like she's missed a meal- she looks very healthy with her chubby little cheekers! I am so glad she's on top of the heart list. I am sure it will give one family a sense of peace knowing that their heart wrenching loss will mean they are giving a life to another sweet baby. Do you ever get to meet the heart family (after all is said and done?) Wow, that would be amazing if you could! like always, you guys are in our thoughts and prayers. I continue to be amazed with you and Jr.'s strength through this all. Your family touches lives daily in so many ways-Thank you!
Tiffany

Anonymous said...

What a week! I sent out another prayer request to our friends and extended family a couple of days ago. I cannot even explain the way I felt when one family e-mailed back and asked for prayers for a neighbor family of theirs who lost a one year old son due to a tragic home accident in 2007. My friend said the family is still dealing with the loss of their young son BUT they did donate his organs and were able to help 7 other families! My hope is that Lindsay's stalkers will say an extra prayer tonight for Angel Matthew and his family when they kneel down tonight and pray for Lindsay and family.
Please know that we are still checking the blog everyday and are keeping the prayers coming from down here in Texas.
Love,
Mark, Barb, & Chad

Anonymous said...

Glad to Lindsay is doing better, everyone at ask about her every night, thanks for the up date. Nice pictures of you and Lindsay. I went to the jewelry party had a nice time, everyone there was so nice. I saw the boys they looked good. Our thoughts and prayers are with all of. Lots of love Retta and Wade.

aimee gillespie said...

Hope Lindsay is doing better with her withdrawl this afternoon. Way to diagnose her, Suzie! I had a really nice visit with you guys on Thursday. And you're right, she does tend to want to draw people back because I'm looking forward to making a return trip! Give her hugs and kisses from us.

Aimee and family

jen hnilo said...

Lindsay is just beautiful! I bet it feels beyond wonderful to see her becomming more like herself again. Thoughts and prayers with you as always.

Elaine said...

Well...it isn't like you haven't heard this before...but what a GORGEOUS child!!! I mean, first the eyes look right at you and then you see the cheeks...well I just want to pinch them and kiss them!! I can hardly believe how quickly she looks like a happy normal little girl once she comes out of sedation...amazing.

We are all praying for you, of course, and also Carlee and Conner...please tell their parents that the names they don't recognize on their blogs, are just the Lindsay stalkers checking in! I am sure you have formed a new family among the 6 of you who all understand what each is going through. That is a blessing for all of you.

Well...M didn't GO BLUE today...so maybe the HLHS babies at Mott's can show them how to win!

Love and hugs, Elaine

Tina said...

Miss Lindsay looks so good, we are so glad to hear her progress is good and that they finally put her on the "List". We are trying to prepare for the North Carolina group so haven't been able to stalk today. Thanks for the beautiful pictures. Hugs and prayers on the way.

Love you All,

Steve and Tina

Maggie Geiger said...

Oh my Gosh, she is just the sweetest thing!!! I agree with Tiff, I want to squeeze her cheekers! Thank you so much for sharing pictures of the Princess, it's always nice to see her cute little face when I log on. I'm so glad that she is on the top of the list. Exactly where a Princess should be!!!!
As always, you are in our prayers.

Love,
Dan,Maggie,Ben,& Alli

Amanda-The Family News! said...

I am praying for you all!!! I am in a hotel in LA on my way from SC to TX and had to check in on you! I am glad for the update...much prayers.