We were able to check out of the hospital this morning around 10:45a.m. Gracie seemed to have a little bit of a rough night because she threw up 4 times. They decided to turn off her food because of it around 6:00a.m. This short experience in the hospital proved to be a little more frustrating than when we were there for 2 1/2 months. I told the nurse that during our last stay, in a way it was like she was kind of their baby and that this time around, she was MY baby. I know her now, know what she likes, how much food she can tolerate, when she should get her meds etc. So it was hard to not be the one in charge of her care. To sit back when you know something should be being done for your baby is very challenging. It took them until 10:00 p.m. last night to get everything organized to finally start her on food even though we had the go ahead at 6:30 p.m.. By 10:00p.m. it had been 16 1/2 hours since she had last had food in her stomach. They gave her sugar water through an IV but no milk. Don't get me wrong, we think Primary Children's is wonderful. It was just really difficult to sit back while certain things like getting her food and meds were delayed, and delayed again.
Since we've been home, Gracie seems to be hurting. Some of Gracie's side effects are:
1. Raspy cough and cry. I'm sure my poor baby has a sore throat from that breathing tube being down her throat for about 5 hours.
2. A sore where they took the IV out and two other sites where they obviously attempted an IV and failed.
3. A big bruise on the outside of her right leg. They are not sure how she got it. They think it may have been from the restraints they put on her while in her cath.
4. Four pretty good scratch marks across the back of her head. We think she scratched her head on the cords coming off the blood pressure cuff that was on her upper arm.
5. And of course the sore in her groin area where they went in with the catheter.
It breaks my heart to see her in pain. Gracie cries or whimpers every moment when she is awake. Hopefully we will have our little smiley girl back in a few days. I am grateful for modern medicine and the abilities of the wonderful doctors who have the knowledge to attempt to fix what is wrong with our Gracie Girl. With the reality of her condition on the forefront of our minds the last couple of days, I could not help but think that she should not be alive. For how severe her condition is and what she has been through, she truly should not be here. We are grateful for every minute Gracie is in our life. We appreciate all of you who are praying for her. Your prayers are working!
24 comments:
What a relief that everything looks ok for now. I'm so glad that she's home with you. So sad that she's uncomfortable.
Michelle,
Reading your blog tonight reminded me of how we as Mothers want to protect our children from the hurts of the world. It must be very difficult to see Gracie go through all the procedures and to be in pain. I feel for you.
Marilyn Moore
Oh my gosh! I have been having computer issues, and have been in the dark about the latest happenings. I am happy to hear you are home, but it sounds like another rough ride. Poor little Gracie. It is a good thing she is such a little fighter, though! And I think that if she takes after you, it is a good thing! :) You all are in my prayers. And we will all be fasting on Nov. 2nd.
Were you making a pun with your "working out the kinks" title? I sure hope the doctors worked out Gracie's kink in her Sano and everything will go smoothly from here on out. We love our little Geeg. She is a miracle, she MUST stay around to teach us more life lessons....I have learned so much from her already. ;)
I am glad to be reading that you all are home with your precious baby girl!!!! Prayers will continue!!!!
Amanda in SC
I certainly relate to the frustration of someone else caring for your baby differently than you would. Know it breaks your mother-heart! Evie is preparing for a cath in the near future and Im dreading it. So hard to sign your baby up for pain when they appear to be healthy and happy. Will continue to pray for Gracie's speedy recovery. She's beautiful!!
Mandy
I hope sweet little Gracie gets back to her old self soon.
Poor little Gracie! I am so happy that she is out of the hospital! I just wish that she felt better too! I am still hoping and praying that she will recover quickly! Good luck little Gracie girl!
I'm telling you those caths suck, it took forever to get Teagan back to Teagan and then turn around and it is time for the Glenn. I'm glad your home and you can do all her nursing again!
I can only imagine what you are going through. I can't help but wonder how YOU are doing. I pray that you will have the strength to keep up with all that is required to care for your little Gracie Girl.
Dearest Michele,
Bless your heart. I love you and I'm so saddened by what your family and Gracie are going through right now. She has endured so much and still seems to be such a fighter, she's such an example to me. Give her a gentle squeeze from me and us.
Love Grandma Wiser
I am so glad you are home now. Poor Gracie - I hope she will heal soon and get back to her cute little self. I can't imagine how hard it is to see your baby in pain. It breaks my heart! Here's hoping for a quick recovery so she can enjoy some time before her next visit to PCMC. Hang in there Michele!!! You have so many prayers behind you!
Natalie
I'm glad you're home and I hope she feels better soon.
I've continued to review Gracie's blog and I appreciate your diligents is keeping this site up-to-date.
I will added Gracie back onto by daily prayer list and I will enlist some prayer warrior friends I have when her surgery date gets closer.
Thank you, Jean
So glad you are home...holding you all and especially Gracie in our prayers. What an amazingly strong baby girl!
Heart hugs to you~ Rebecca
So glad you are home...holding you all and especially Gracie in our prayers. What an amazingly strong baby girl!
Heart hugs to you~ Rebecca
Michelle,
Gracie is so blessed to have a strong momma like you. You give her a voice while she has none. I agree about the second time around being worse than the first. She is yours now and you you do know her best--I know you will help those gifted life-givers SEE Gracie as someone's baby.
xoxo,
Mindi
The older it gets the tougher it gets... geez! Hopefully Gracie will be feeling like herself soon. I'm just staying on top of the tylenol with Owen all weekend... those cath sites look so painful!! :(
Any word on if they decided to go ahead with her Glenn in Nov or give her more time with the stent?
Prayers will continue!!
I am so sorry that you and Gracie are going through all of this. I hope that she will feel better soon. As always you are in my prayers.
Cute new pictures on your blog.
What sweet adorable children you have. Gracie and your entire family are in our prayers as always.
Love, Gracie's Favorite Great Aunt Connie (even though she hasn't met me).
Always in our prayers, sweet Gracie girl!
Tami
just want you to know that we are thinking about you guys and keeping you in our prayers!!
YOU ARE AN AMAZING FAMILY...I HAVE BEEN FOLLOWING GRACIE'S BLOG FROM THE BEGINNING. I WAS AN OLD ROOMMATE OF TIFFANY'S. WE HAD A FAMILY HOME EVENING LESSON TONIGHT ON ANGLES...I JUST WANT YOU TO KNOW THAT ANGLES ARE ALWAYS WATCHING OVER GRACIE AND SHE FEELS THEM...HANG IN THERE!!
I haven't visited in awhile (the no-media thing) but I heard about some of these latest developments last night, so I had to come and see for myself.
What a privilege it must be to have such a precious, incredibly strong spirit in your home with Gracie. You have ALL been incredibly strong. We will continue to pray for her and for your family in these coming weeks.
I love the comment about giving Gracie a voice. That is what we all do as mothers, in different ways and in various degrees. I imagine it is one of the most important things you can do for Gracie: tell the story of her heart, share what is in your heart, and by doing so, enable us to change our hearts.
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