She sure is a tricky one to figure out these days. Before we left the hospital this evening, or should I say this morning, Lindsay had spiked a fever again. Doctors keep taking cultures and they don't grow anything, so no infection as of yet. They wanted to take more tonight but JR and I got a little upset because everytime that they do this, they obviously take blood from her that she needs to keep. After a long discussion with the doctors, and yes we went back to PCTU to have discussions with them as well, we have come to the conclusion that they will take blood cultures if she spikes again which we are quite convinced that she will because, even though the moderate care doctors won't admit it, SHE IS WITHDRAWING PEOPLE!!! grrrrrrr. We just think that she is not withdrawing quite so severe as other children. Low cardiac output could be another reason for fevers but her symptoms are even different from that. So, with a little Tylenol and we luke warm washcloths, she comes down nicely and is our happy little girl again. They just have to expect her to be doing this after being on constant sedation drugs for 7 weeks!! I hate to argue with some of the best doctors in the country, but we have seen her at worst and at her best and the mom is starting to come out in me..........picture me as Shirley McLain (sp?) in Terms of Endearment.....give my daughter the drugs!!! Give my daughter the drugs!!!!!
Well, it didn't go that far but I'm obviously still revved up about it since I'm posting this at 2:15 in the morning!!!! WHew!
Jr and I are leaving for Kalamazoo around 2pm tomorrow. We will get the boys for a night so that will be great to have them. Cole has a Thanksgiving program at school that we can't miss on Monday and then I'm back to Ann Arbor Monday afternoon. Jr will be home with the boys through Wednesday and then all three will be joining me in A2 for the weekend. Hoping we can keep them entertained enough to last that long. Otherwise, Jr will just go back earlier if need be. He is then back to work for a while.
Thanks for letting me vent tonight........keep praying and pray for our sanity....I think we have been here way to long and it just might be getting to us! :-)
Love,
Suzie
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12 comments:
Praying Praying Praying!
GOOD FOR YOU to stick up for Lindsay!!! Sometimes the Dr.'s just go with "routine" and ONLY you and Jr really KNOW Lindsay.
I have become the "NO and WHY" mom at the hospital, but have saved Owen MANY of pricks and unecessary testing because of it. You have every right! After Owen's Glenn he spiked fevers ALL the time... we'd been in ICU for over 30 days and he was teething. I had to put my foot down on the cultures because NOTHING ever came of them.
Sounds like you have things under control up there! Enjoy the boys this weekend and I hope you have a fabulous Thanksgiving. This Thanksgiving is ONE that we truely have more to be thankful for than we ever thought imaginable!!
Hugs from AZ
You guys have every right to be frustrated! It is so hard as a parent to know when you are doing the right thing even when everything is all well and good. You have a Mother's intuition, nothing better!!!!
Please enjoy your family being together this holiday and know that will we all being saying a "thankful" prayer for the Princess!
Love,
Dan,Maggie,Ben,& Alli
Hang in there. You should be proud of the dedication you have given your daughter. It is amazing the strength that you all have had through these challenges. We are hoping for the best and feeling especially thankful for the health that we so often take for granted. Happy Thanksgiving!
Cheryl, Craig, Clayton and Grace
Well, my dear Suzie...your cheerleaders are out in force this morning!!! (even if we land our splits backwards...an inside joke with your mother!!) YOU ARE RIGHT to step in with the doctors about Lindsay...no one knows her better than you and JR.
And O. M. G. ...are you saying every time you switch units, you switch doctors???? That would drive anyone crazy...I do not know how you two are staying sane!
I am so glad you ranted to us...you need to be able to do that and if that's at 2 am and then you can sleep...good for you! I know that everyone of us who loves you would take a phone call from you at 2 am...so if you really need to yell, call one of us!
You and JR are doing an awesome job of advocating for Lindsay and that is what God wants you to do for now. Our fundraising committee is kicking A-- so that you can do what you need to do. If you need ANYTHING, let us know...money, company, an ear to listen...we will figure out how to do it! WE ARE FAMILY AND WE LOVE YOU!!!
So...there is Elaine's rant and I feel better too! Have a wonderful time home with the boys,
Love, Elaine
You should absolutely argue with those doctors. They may know the "medical stuff", but you know your daughter! The biggest lesson they should have learned in med school... Don't Mess With Mom!
Hang in there. Enjoy your time with the boys this weekend.
Aimee
Dear Suzie and Jr,
FRUSTRATED!! You think! I would have been up in the tower on Oakland Drive by now,if you aren't from Kalamazoo, you won't understand. You two have been and continue to be so strong. Just know that we are all here praying for your sanity and strength to continue for Lindsay, Cole and Cruz. You two are doing a great job keep it up.
Have a wonderful time at Cole's program and keep us updated. We love you all more than you can know.
Love ya,
Steve and Tina
You are all in our Thoughts and Prayers! Joe and Sara Dziewicki
Good job Suzie!! Always follow your gut instinct. Doctors are super smart but sometimes it takes someone other than a doctor to take a step back and say "STOP!". Its medicine and its far from an exact science and all patients don't follow the book--Miss Lindsay certainly doesn't seem to. You guys have a great week--I hope to get over to see you.
I still can't listen to the music on the blog....especially with her sweet eyes looking at me.
Love,
Amanda
Hi Suzie and family,
we wish you all a happy Thanksgiving. We are thinking of you and praying for a new heart soon. Good job standing up to the doctors, they sometimes get carried away and tend to think only by the book. They ofter forget that a patient is a person!!
Love Ute and family
It is so fustrating watching your child go through something and not be able to help and waiting for the doctors to figure things out. Just thank god that the cultures aren't growing anything. Try to keep you sanity. It's hard I know, trust me I know. Were just around the corner if you ever want to use Eric as a punching bag to let off a little steam.
Michelle
you know your baby the best! a doctor should always go by a mothers intuition (in my opinion!). you guys have seemed to have held it together for so long I am sure there are points you just want to put your foot down and say "look here people..." Tonight as I read this I will be praying for the princess, but putting more energy into keeping you two strong as parents and giving you the strength to pull through, yet again another frustrating time. Deep breaths!!
Tiffany
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