Kyara Dzenis

Kyara Dzenis

Friday, April 17, 2009

Rehab: Here We Come

Today Kyara has been doing much better. Her storming seems to have subsided and she is more relaxed. Her heart rate is still up in the 130s, which is higher than it has been recently, but MUCH better than the 180s-190s we were seeing for the past few days. Her belly is also much better. It is almost flat, it is not nearly as distended and it is soft again. Yeah. I wish we knew what happened, and how it was resolved, however...Kyara is a mystery. The doctors are not sure what is driving the colon issues. This is frustrating. All I can think of is that God heard our prayers and has given her some relief. There is no medical explaination for her improvement today. The medications from the rehab doctor seem to be helping, but even he said, if she is storming, there is not a whole lot he can do to stop it. So, it still seems the colon in the culprit. Get the colon under control and the storming seems to be under control.

So today we had a team/parent meeting with Dr. Meyers (GI), Dr. Solas (rehab), Dr. Bleacher (surgeon) and Dr. Davy (ICU doc). We went over the plan for Kyara... we are going to restart feeds in her j-tube tonight, and try giving her probiotics. Probiotics are the "good bacteria" that are in digestive tract. Since she has been on some major hitting antibiotics, the docs are wondering if it has disturbed not only the bad bacteria, but also the good bacteria. To an antibiotic, bacteria is bacteria. If these things don't work, then we will be considering doing a diverting ostomy. This will take the ileum (between small intestines and colon) and bring it to the outside of her body. She would then have a bag attached to "collect" stool and allow gas to escape. This is a surgery that would be reversible, but would give her colon a chance to fully heal with nothing going in it. Scary, but if that is what it takes to make her better and have a good chance at rehab, then I am all for it. I can deal with poop bags alot better than storming and her being so uncomfortable for days at a time. We will see. Hopefully, the colon is now feeling better after the flight and will begin to heal better. I hope the probiotics do the trick and we don't have to worry about an ostomy, but only time will tell.

Kyara was deemed stable enough to move to the rehab floor tonight! Thank you God! I am ready for them to start working on her. Dr. Meyers, Dr. Sholas, and our nurse today all said they saw Kyara looking around, seeming to take in her environment. She is shifting her gaze to noise. I believe Kyara is in there, and the nurse said after working with her for 8 hours today, she felt she was in there, too. This is the first time anyone has gotten to see this side of Kyara since she has been in Atlanta. And she does even a little better than this, when she is feeling good. I think they have something to work with, so I have high hopes for getting Kyara in the rehab here. I also want only positive people working with Kyara. If you don't think Kyara is going to get any better, then I don't want you working with her. I am well aware of Kyara's injury and how significant it is...but some people still recover. I am not going to give up. Gunars was telling me about an article he read where they are removing an entire hemisphere from people's heads to treat epilepsy, and these people recover! So although Kyara injury is global (all parts of her brain) I still have to believe in her.

Finally, I want to say Thank You to my mother's sorority for putting together a fundraiser for Kyara tonight. I was so touch and I had a very hard time expressing my emotions properly. For that I am so sorry. Words can not express the gratitude we have for the help you have given us. I was blown away by the love and support of so many people. I could not help but to burst into tears walking in the door tonight. Please excuse my behavior, I know I was a bit stand-offish, but I was trying hard not to burst into tears the whole night. I was just overwhelmed, thankful, humbled, amazed, and felt total love. Thank you so very very much.

God has done 3 great things for us today. He has helped Kyara become more comfortable, He has gotten Kyara to the Rehab floor and hopefully she will begin therapy tomorrow, and He has brought many wonderful people together. We are very blessed.

9 comments:

Anonymous said...

Genie, my MIL had an ostomy recently due to medical issues. We all worked together and helped her deal with it for 3 months until she had it reversed. Although it is 2 major abdominal surgeries, it did give her time to heal. I hope that if Kyara has to do it that it will help and cause her storming to decrease in frequency.

Marilyn Munford (I knew you from Moms in Motion when you were pregnant with Kassey and I am a SCHS math teacher that knew your mom) You certainly are a blessed woman to have such a loving extended family!

mukie said...

Jenie,
We are keeping Kyara and all your family in our prayers.....I am Heather's grandmother, Becky, she says Hello and sends her best..Hope you all enjoyed the fudge....Kyara is going to start improving very soon.
God Bless and be with all of you.
Becky

Anonymous said...

Isn't God great? He is the great healer and it is so cool to get to watch Him in action. We are still praying for you all constantly and can't wait to hear about all of the great rehab moments to come! Always praying...
The Lopers

Anonymous said...

God is so good!! He works in mysterious and marvelous ways and for that we are very thankful!! We will pray that they probiotics work!! We have had wonderful results with them, so maybe that is just whats she needs to restore the balance in her digestive tract. We are still praying and thinking of you guys often!!

Go Kyara go!! It's time to start rocking in rehab!

The Brandons

The Lanes said...

What awesome news!!! It brought tears to my eyes. What blessings. Still praying in South GA. Lana, Russell, Caitlin, Savannah, and Alexander

Anonymous said...

God is great and his love is even greater! Watching His work in action is nothing short of a miracle! Your entire family has so much love and support behind you and Kyara. You are very blessed. May God grant you peace.

Melissa Trebuchon
Nanston Dental
Fayetteville

Anonymous said...

Genie,
You are a wonderful mother who is doing a tremendous job! Your perserverance and positivity are inspiring. I am praying for you and your family.
God Bless,
Jess Hernandez

Anonymous said...

I haven't given up either!! No matter how slow/frustrating it is, Kyara is definitely making progress! I have great faith in Children's, and the doctors/nurses/staff there. The entire facility has a positive vibe that can be felt as soon as you walk through the doors. I know everyone involved in Kyara's case will work toward her continued healing/recovery. Good luck with the probiotics. I've heard only good things about their benefits. I continue to hold you in my prayers.

Anonymous said...

Genie-
Yea!!!!! I have to admit I was slightly bummed when I saw that Kyara was not in the ICU, but very happy that she was on rehab too!!!! That is an answered prayer and your continuous support and love for her is what will help to see her through this stormy journey. I did not leave work until 9pm and tomorrow I will stop by the rehab unit to say hey! Let me know if you and Gunars need a date night and I will come and stay with Kyara and maybe you two could go to dinner! I can always entertain Miss Kyara! My prayers and thoughts are with you now and the long days to come full of therapy.....bring it on!

Love, Stephaanie, RN ><>