I have regrouped. Thank you so much for the inspiring comments on the last post. I was a bit frazzled and I have since taken a deep breath and looked for the bright side of things.
Kyara has been more at ease since last night. Her heart rate is as low as it has been since the surgery (in the 120-130s) and she did not spike a temperature last night! She appears much more comfortable and she is not working as hard to breathe, but she has a TON of tubes now. Two in her nose and 3 in her mouth. All are doing different jobs and are needed, but, my goodness, it is a lot of tubes. The doctors have been doing cultures on Kyara and found she has some kind of fungus growing. They are consulting with the disease specialists and figuring out the right medications to combat the fungus.
One hiccup that occurred since last night has been a feeding issue. The doctors put in a feeding tube through her stomach and into her intestines (They want the stomach to rest and they are draining the stomach so that juices don't spill out into the esophageal leak.) Well, the nurse last night attached to feedings to the wrong tube and put it directly into her stomach. This is NOT a good thing. When I realized what was happening and informed them that the feeds were going through the wrong tube, she switched it immediately. But now, the drain the is in her stomach is still draining feeds even though they are supposed to be in the intestine. The doctors are going to do an xray to see if the original feeding tube (in the intestines) has moved up into the stomach. They will have to fix this tube if this is the case.
14 comments:
this is GREAT news!!! So happy to read this post. Wonderful... I am very happy for you guys. things will start to go uphill from now on... :-) Tina
Genie- you are doing a remarkable job! Stay strong and know God is there with you! Kyara will pull through all these hiccups and be stronger and better!
Hang on! Skylar and Gunars will be there soon. Safe travels for everyone.
Please know you, Kyara and the entire family are being thought of and prayed for every day.
Take care,
Lorri and Megan
Genie,
What a wonderful strong mom you are! Your girls are so Blessed to have you. Great to know Kyara is able to rest some now and her little body not have to work so hard. That will help her heal FASTER! Prayers daily for you guys from all of your Karate family!
The Cambas Family
Genie-Keep staying strong! You are an amazing person and an even better mother. You and Gunnars have done the right thing. And time will show it! It seems Wednesdays' surgery allowed them to get to the bottom of some of her recent problems. I think it is awesome that you can use this post to inform us and allow us to be there for you throught the frustrations and disappointments. And I know this blog is therapeutic for you as well. Take 5 minutes for yourself every now and then so you can continue your show-stopping supermom abilities! Go figure that you are such an amazing mother; you learned from the best! (Aunt Peggy- Awesome that you can be there for your family! It's hard on you as well...so I am throwing some love your way as well). Hugs and Kisses to all, :)Stephanie Rosehart
Good to hear the problems are being identified. Hang on and maintain. You are all doing a wonderful job. Won't be long and blue skies will be smiling at you all!
Sorry, that would be the Vaughn's wishing you blue skies and smiles!
Genie, after all these problems there is one good thing about it, you understand well what is going on with these tubes in her body, for me it is hard sometimes to figure out what you are mentioning, but keep your hopes very high as they are mine. My best wishes for all of you during this difficult time but I know she will make it.
Genie-I don't know if you remember me but my daughter Stephanie went to pre-k with Skylar. My son's teacher e-mailed me your blog as a child to pray for and when I opened it up and saw that I knew you I had to write. I am sure you don't know but my son was born with a condition called hypoplastic left heart, meaning the left side of his heart never grew. He was diagnosed when I was 5mo pregnant. The doctors didn't want me to have him, gave me awful percentages of his survival but I didn't believe them and I went on. He has had 3 open heart surgeries, two strokes and a g-tube which was just removed last July. In other words I know exactly what you are going through. I know what it is like to live in the hospital and feel so helpless confiding in the doctors to do their best. I just want you to know that I will be praying for all of you for God to continue giving you strength to continue on for your little girl and your family. Trust me I know how hard it is and sometimes you feel there will never be a happy ending but let me tell you my son has been through a lot and thank God he is developing normally and I truly believe God has a purpose for him as for your little girl. Please don't blame yourself for what happened, I know I tried to even when the doctors told me it had nothing to do with me but as parents we always want to blame ourselves for anything bad that happens to our children. Please confide in God that he will take care of her and she will get through this and continue a full life. I would love to hear from you, my e-mail is pireina@aol.com. My name is Ivette and I remember talking to your husband a few months back when the kids had a party and I sent you all an invitation to his father's house (again) Hopefully you remember us and will write so we can exchange phone numbers. God bless you all and I hope to hear from you soon.
Genie,
Continue to be strong and take care of yourself. You are doing a great job being there for Kyara. Keep fighting Kyara!!!!!!
YOU are in our thoughts and prayers.
Marilyn(Kyle's mom)
Genie - wow. To be completely honest I didn't know you had this blog up until tonight and had thought about you and your family this month and had wondered how things were going. I cried reading your whole blog. Having just had Kayce 3 months ago and being a new mother I can't imagine what you are going through. Kyara is a hell of a fighter! Amazing. I know nothing can be easy for any of you guys as you take things day by day. I must say you are an inspiration to me. You are such amesome mother and wife. Ricky and I are thinking of all of you guys.
He who has hope has everything.
- Arabian Proverb
Love to all,
Caryn, Ricky, and Kayce
We are so grateful this Thanksgiving that Kyara is so strong and that she is going to be better and better each day. We want so much to be there to see her and to give her a hug. We want to be there for all of you. We hope you know that are hearts are joined with yours in prayer for a rapid recovery with NO more bumps.
Your classmates send their love:
Gavin: I miss you and I love you. I hope you have a Happy Thanksgiving.
Creighton: I love you and I miss you, and I want you to have a Happy Thanksgiving.
Caden: I want you to come to my house and have a Happy Thanksgiving and I want you to play with me and I love you.
Audri: I want you to come to my house. I hope you are having a Happy Thanksgiving.
Ryan: I want you to be better and give me a kiss and come to my house.
Sammie: I love you and I miss you.
Kyle: I want you to get well and have a good Thanksgiving.
Owen: I miss you and I love you. I want you to get well and have Thanksgiving with me.
Gabe: I want to kiss you and love you.
Joshua: I want to say that I miss you and I want you to get better and have a Thanksgiving snack.
Angelina: I want you to give me a hug.
Austin: I want you to come to my house. I love you and I want to kiss you.
Dylan: I want you to come back and play with me. Happy Thanksgiving.
Alexis: Have a Happy Thanksgiving. I love you.
Lanna: I want to let you come to my house. I want to let you come play with me.
Antonio: I want you to come to my house. I want you to play with me.
Andrew: I want you to come to my house and play with me.
Justin: I want you to come to my house.
If we can do anything to help, please do not hesitate to ask. Our students and their families ask about you daily and many are keeping up with your progress through this website.
Thanks so much for keeping us informed through this website.
We love and miss you guys terribly!
Mrs. Carlisle and Mrs. Laurie
Good to hear that they have identified the fungus...that is good news that they will be able to treat these fevers (which are likely contributing to the heart rate). I hope she has a good weekend...and that having her whole family there will get her to heal faster!!!
God is so good! Kyara will continue to get better, and God will continue to give you strength when you need it most. Have a wonderful Thanksgiving with Gunars and Skylar and your mom and Kassey and Kyara will be eating before you know it. We'll keep praying! The Lopers
Hi Genie,
I'm amazed by your journey with Kyara. You were right in saying there are some wonderful people in this world amongst the troubled ones. You are one remarkable woman and mother! o.k. I think I'm getting carried away with the adjectives. -just one more-- these comments from friends & others are just incredible. It must help a little to keep you going.
I'll be thinking of y'all and praying for a positive outcome.. :)Cheryl Bellavance
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