Kyara Dzenis

Kyara Dzenis

Tuesday, March 3, 2009

Air Outside the Colon

Kyara has air outside her colon. The doctors are not sure where it came from, but there it is. Right now Kyara is asymptomatic, and I hope that is stays that way. The hope is that is will just be reabsorbed by her body and not cause any problems. In the meanwhile, she is staying on the Pediatric Surgery service and her tube feeds have been stopped. She is still on TPN, which gives her nurtition through her veins. This is not good for long term, though, because it is hard on the liver. We need for her GI tract to start working properly. Her colon is also very dilated and holding air. Dr. Tony (Kyara used to have a crush on him when we were here in the fall) tried a rectal tube to help relieve her gas, but it did not release much. I was expecting it to sound like a balloon deflating...no such luck. One little squeak, that's it.

In rehab, Mr. Dan got out a carseat like the one we will have to get for Kyara. It is specialized for kids with disabilities. It even has the option for a cap that velcros to the headrest that the child would wear to help keep their head up. I hope Kyara will be able to hold her head up without having to use that. We will put Kyara in it tomorrow or later this week and test it out. We still have a while before Kyara will be ready to come home, but it is good to get the ball rolling and getting things ready for her.

Kyara is having a harder time with sleep again. She is sleeping earlier in the night, but up by 12:00am and storming from 3-7:30am. The new doctors have adjusted her meds some, so I hope she has a more peaceful night tonight. She is also going back to sleep at 8:00am. This is not going over very well... PT/OT is at 9:00! Kyara is sleeping right through it! Mr. Dan and Donna have Kyara sitting up on a ball (Dan holding her, of course) and she is sleeping right through everything. I wish she would sleep like that at night!!

My prayers are for recovery. More specifically, I pray Kyara will begin to respond more. The response we get come and go so quickly. She has not been mouthing "HI" much anymore. I pray each day she will recover a little more and that I will be able to see the differences. Sometimes I think we just don't recognize God's work and signs. I look forward to seeing Kyara smile again, and having her hug me again. I also pray for sleep at night for Kyara. I still believe that until she has a couple of good nights' sleep we will not have a good baseline for her. She also needs to have this colon issue resolved. Please, God, help this resolve.

13 comments:

Anonymous said...

Dear Genie & Gunars,

Remember we are all still praying and keeping watch with you. God is always working "behind the scenes", even when we can't see His handywork in front of us. Stay hopeful and the improvements will come. Everything will be revealed in His time, and we just have to w--t. It has got to be grueling for all of you, us too. Love, Spokane

Sherry, RN said...

Genie, Gunars, Kyara and family;

Many prayers are being said for all of you. I continue to pray for Kyara's recovery and for strength for all of you. I know times are difficult and I will continue to pray.
Love,
Sherry

Winkie-Dink said...

Genie,
I pray for the"air" to just go!! Ladybug, let 'er rip!!! Also praying for specifically for rest and sleep for Kyara. Genie, each time I read your post, I am amazed at the strength you have. I thank God for that and ask Him to continue holding all of you in His hands. Love you all. Hug Peggy.
Love, wink

ireina said...

We continue praying for Kyara I know this is a slow process but I believe God has all the power to help her recover and will.

Lots of love,
Ivette

Anonymous said...

Genie,
You are so strong. Every day when I read your blog, I am amazed at the strength God has given you. (I shouldn't be amazed at his handiwork, but I am) Kyara...let it all out, baby! Hey, maybe Dan & Donna could show up at 3am! (hee, hee) We'll continue to pray for sleep and healing.
The Lopers

Anonymous said...

Sending prayers and hugs your way!!I pray that Kyara is having a good day.
Love,
Misty Evans

Sallie said...

We are continuing to pray for Kyara.....and wanted to let you know again how much her story has touched us. We are now volunteering at our local Ronald McDonald House by creating "breakfast bags" in honor of the wonderful blessing the RMH has been to you and your family. Kyara continues to touch lives in more ways than you could even imagine....God Bless you...

Unknown said...

Dear Genie and Gunars,
Just wanted to pass along the e-mail of my friends dad who is a pediatric neurologist out here in LA. We spoke, and while he certainly wouldn't presume to knowmore than your doctors he suggested it might be helpful to chat just in case he has a different idea or questions that you could be asking.
his name is ronald Baum and his e-mail is aneuron@pol.com. He would be happy to hear from you if you are up to it.
xoxo Audrey Davidow

Anonymous said...

To the Dzenis family,

You don't know me, but I work for the same company as Kyara's grandpa Mike. I spent a couple of days with Mike in Louisville last week at a show and I heard Kyara's story. Reading your blog breaks my heart and I want you to know that I will keep Kyara and your entire family in my thoughts and prayers. May God bless Kyara and her entire family.

Mark Spease

Anonymous said...

Genie,

The car seat sounds good. Now let's just put her in it and bring her back to us! We know you want that so much too. We really miss you guys terribly!

We join you in prayer for more sleep and more responses from Kyara. We are praying for those hugs and smiles to come real soon. We are also praying that the issue with her colon is
resolved very soon too!

Please give our baby a kiss, and give yourself a big hug from us too. All of you guys continue to be in our prayers.

Love,
Laurie and Josette

Anonymous said...

When God leads you to the edge of the cliff, trust Him fully and let
go, only 1 of 2 things will happen, either He'll catch you when you fall, or He'll teach you how to fly!

I received this in an email today, and it made me think of you.
Anne Henley

Unknown said...

Bless your sweet hearts. My name is Pam Kyzer and live by Willis Rd school. I babysit for Kelly Zern's daughter. She teaches 3rd grade. Every morning when I read about Kyara, I say a special prayer for her and her family. There are so many times a day that I lift up prayers for her. I always try to remember that the God in the valley is the same God that is on the mountain.

Anonymous said...

May our good God bring you many good gifts on this good day. Love and prayers, Bro. Bruce, Good Hope Baptist Church ... James 1:17 (KJV)
Every good gift and every perfect gift is from above, and cometh down from the Father of lights, with whom is no variableness, neither shadow of turning.