Kyara Dzenis

Kyara Dzenis

Tuesday, March 31, 2009

Esophogram

This morning Kyara had an esophagram done to make sure the opening from her esophagus to her stomach was wide open. The test confirmed that it was open, so we should not have any problems going back to Atlanta. I asked for copies of all of her films on a CD to take with me, and the receptionist asked, "All of them? That will be alot of work." There are 149 xrays, studies, ct scans, etc. "Yes, I want them ALL." I want to have something to show the doctors in Atlanta where she was and where she is now. I want them to see the pneumatosis, so they know what happened to her. I want the copies so that I have them, too. Alot has happened to Kyara and I want to keep a record of it all.

Today Kyara opened her hands by herself. This goes against her muscle tone, which causes her to clench her hands. She opened and closed her hands for 15-20 minutes before stopping. I was excited because the occupational therapist, Donna saw it too and was impressed. This morning Kyara also appeared to answer two questions with blinks. The first time, I had her sitting "criss-cross" on the bed (of course, I was supporting her, she was not sitting unassisted) and when Dr. Rita (PM&R doctor) came in, I laid her back on the bed on the pillow. She got very fussy. Dr. Rita told her to blink twice for "yes" and close her eyes and keep them closed for "no." Then she asked Kyara, "Do you want to sit back up? Remember blink twice for yes and close eyes for no." Kyara blinked twice. So I sat her back up and she immediately stopped fussing. To be honest, I am not sure what happened the other time, I was on the other side of the room (there were 3 docs in the room with her) but Dr. Rita said she responded similarily. Later in the afternoon I tried it again, but didn't get a response. Oh, well. Dr. Rita said we have to work on it with her, so I have a new project!

Kyara has these moments where she is doing amazing things, I just wish they would become more frequent. It is frustrating to see her do something, and then not do it anymore. Where did it go? Consistency...I pray for good things to happen on a consistent basis.

Monday, March 30, 2009

Moving Along

Two good things happened today... First Kyara held her head up this morning for almost 1 minute. I had to help her pull her head up into a neutral position, but then she held it there. I am thrilled! Secondly, I think Kyara mumbled "Momma". It was difficult to make out, but I really think that is what she said. I was asking her to say "Mom". It was soft and garbled (she has alot of secretions in the back of her throat), but I saw her mouth close, lips pinch together to make a "Mmm" sound, then open for an "ah" sound and close again and make a "mmm" sound again, then open once more and an "ah" sound. It was slow but it really sounded like she said it. I immediately burst into tears of joy! I hugged her so tight and told her how much I love her. I thank God for these beautiful sounds!

Kyara is also crying more when she is uncomfortable. I think this is a good sign. She is telling us her needs. She cries when she has a dirty "hospital pant" or when she is stretched. Finally, she is also swallowing her spit much better than she was in the past. Before we would have to suction out her mouth quite a bit or she would drool. She is not drooling anymore and she doesn't have that hard clenched teeth anymore.

God is great and He is working His powers on Kyara! I have been wondering why the doctors are having such a hard time healing Kyara, but there is only one true healer, God. Without God's will, the doctors cannot do anything to help Kyara. When He decides the time is right, Kyara will make the appropriate steps. God has a plan, not just for Kyara, but for all of us. We are going through a very difficult time right now, but I know that God has a big plan for our family. Everything will work out according to His will, and He never has and never will let us down. God is Great!

Sunday, March 29, 2009

Gunars is Gone, and Kyara is Asleep

Well, today Gunars went back to Georgia. At least, he is trying to get back to Georgia. He got a seat (he was flying on a buddy pass, THANK YOU BARRY!) on the 6:30 pm flight and at 8:10 he was still sitting at the gate in Detriot! The snow (yes, you read that right, it is snowing again) delayed the flight. I can't believe it is almost April and it is snowing again. Where's the sun? Where the warmth of spring? I know one thing, it is depressing up here in the winter. The sun doesn't shine much and it is very gloomy. It really has an effect on my attitude. I can't wait to get back to Georgia and see some sunshine!

Kyara has had a decent day today. She is still very groggy from the medication she is on. She gets Zanaflex every 3 hours. She is mostly asleep for 2 out of the 3 hours between doses. She has had periods of eyes open and she is calm. That is what we are looking for. Usually when she is awake, she is moaning and groaning or crying and looks like she is in pain. So the calm and awake is a nice change, even if it is for only a few minutes at a time. Another thing I have noticed is that she is moving her mouth and tongue alot more. It looks like she is chewing on something. This is better than a few weeks ago when she was clenched down all of the time. Now I can even brush her teeth! Before she would clench so hard she actually displaced 2 of her teeth. One upper tooth and one lower tooth have been shoved back in her gum line from her clenching so hard. Talk about baby steps.

Kyara is progressing, it is just at a very slow rate. I would pray for patience, but I am afraid that is exactly what God is trying to teach me now. I just pray for a good recovery. I miss Kyara every single day. I look forward to her responding to me when I ask her to squeeze my hand. I look forward to her first smile. I look forward to the day that she calls me "Mommy" again. I trust in God and His timing. I know that when the time is right, He will allow her to do these things. In the meantime, I wait...I push Kyara as much as I can, and I love her.

Saturday, March 28, 2009

Gun Back in Town


Gunars got back in town last night and has been spending good quality time with Kyara. Skylar stayed in Georgia with Uncle Allen, Aunt Missy, Curtis, Ansley, Zoe, and Preston. I think Uncle Allen and Aunt Missy have their hands full! Thank you guys so much!

Yesterday was a bit crazy here. The ceiling collapsed in the rooms close to us. It was like a Grey's Anatomy episode where the ceiling collapsed in the Operating Room. We were moved to a PICU 2 as a precaution. I liked the new area, but we didn't get to stay. It had lots of windows and lots of sunlight. While there we stood Kyara up in the bed, Bunny took pictures. We used the head of the bed as a base to lean her on. It seemed to work pretty good. After 5-10 minutes her ankles started to bend inwards, though and we brought her back down. After a while, the charge nurse decided it was safe for us the return to the PICU, so off we went. Being moved back to the regular PICU was like going back to a dungeon. :(

Today Kyara has spent most of the day sleeping. The medicine she is on makes her very drowsy. We are trying to find a good dose that relaxes her muscle tone, but doesn't knock her out. This is a new obstacle to hurdle. We took Kyara to the cafeteria and outside today. A change in scenery was good. There's nothing like fresh air! This past week Kyara has seemed more aware of her environment and she is holding her head up better. She is still sporadic in when she holds it up, but the length of time and her doing it with less tone, is getting better.

We are anticipating getting back to Georgia sometime soon. It is in the works, now we just need the paperwork done, the insurance to approve the move, transportation to be settled, the stars to line up, etc. and then out of here we go! I will keep you updated on the progress.

Thank you for all of the wonderful prayers, warm wishes, care packages, etc. If I have not written personal thank you notes, I would like to apologize. I have gotten quite a bit crazy with everything here and I have fallen down on the job some. We greatly appreciate everything you are doing for us and do not want to slack on the thank you's. Unfortunately, I have misplaced some of the return address and I am not sure where to send notes. May God bless you all.

Thursday, March 26, 2009

New JTube

Today was more of the same. Kyara seems more awake each day. She seems to move her head in the direction of noise and people talking to her. She also got a new Jtube placed today. It is really a foley catheter (bladder catheter) that they are using for the weekend to upsize her J-tube site. On Monday the doctors will put in a MicKey Button Jtube. It will be just like her old Gtube button. It is a little sad to me, one of the biggest reasons we did the original surgery was so that she would not need a button anymore (amd so she could swallow her spit, not gag at night on saliva, eat normal food like the rest of us, etc). And here we are again. But, it is my goal and my hope that Kyara will continue to improve and will be able to eat by mouth in the near future. And when that time comes, her esophagus will be ready. Once she is able to get all her caloric needs by mouth, we will get rid of the button. And to be honest, it is really not that big of a deal. We have done the button before, and it is the least of our worries.

Oh God, please help Kyara recover. Thank you for sending so many prayers our way. God is great and I believe He has a plan.

Wednesday, March 25, 2009

Carseat Approved!

I found out today that our insurance has approved Kyara's monster carseat! This is a big relief. Now we have to push the vendor to get the carseat to us ASAP! I don't want to have to wait on the carseat once they give us the go-ahead to come home.

Today Kyara is looking more aware of her surroundings. she seems to be "gaze shifting" better. This means she looks around the room at where noises are coming from, "watches" people enter or exit the room, etc. Before her eyes would sweep the room without really stopping on anything in particular, now she seems to "watch" things. This is a new improvement! She also lifted her right leg up off the bed today, another thing that is new! Baby steps!

The doctors did not start her feeds today because she seemed agitated. So...what's new? She has been agitated for the past 2 months! I lost my cool a little today with one of the PMR doctors and I feel bad about that, but really.... it has been long enough. I am ready for them to get her meds figured out!! I have tried to be patient, I have tried to be calm, and now I am just down right frustrated. Figure it out, or let us go and see if Atlanta can figure it out! Ok, I am taking a breath...

Thank you for all of the prayers that you are sending our way. I know with God's help, Kyara is making improvements. Each day brings new developments and that is all we can ask for. Moving forward in this journey one day at a time. I am still praying that the doctors figure Kyara's meds out, and that the distension in her belly goes away. I pray Kyara is comfortable and awake so that she can participate in therapies and continue to improve each day.

Extubated!!




I am not sure why the pictures come out backwards from the way I download them, but here they are anyway. The one with Kyara and Gunars is from this weekend. I caught them both asleep Sunday morning. Kyara still had the breathing tube in. The first picture is from earlier today. I put the ball between Kyara's arm and her body. Because of her tone, she is trying to force her arm back into her body like her left arm is. I liked the way she was looking at the ball. This didn't stay for too long, but she went back to it with her eyes a couple of times.
This morning the doctors pulled the breathing tube! Yes! She is also very agitated, boo! :(
She is back to tightening up, and arching off the bed. I am getting frustrated by this. When are they going to figure out the meds??? 2 months is long enough, already! I hate seeing my baby in discomfort. It is really trying on me, physically (from stretching and repositioning her), mentally, and emotionally. I am looking for the postives in all of this, though. I think she looks more awake and aware now than she has in the past. So that is good.
I pray tonight that God will help the doctors figure out the meds so that Kyara can be comfortable, awake, and able to participate in therapies. I pray the feeding tomorrow will go smoothly (they are planning to restart her feeds), and I pray that Kyara will continue to heal. I know Kyara is destined for great things. She has already touched so many people, and in return you have touched me. Our family is so blessed to have so many people offering to help, praying for Kyara, and just keeping up with her story. I think Kyara is an amazing girl. The world is a better place with her in it.

Tuesday, March 24, 2009

New Plan

Today the doctors are planning on extubating (removing Kyara's breathing tube). This is scheduled to happen between 11:00-12:00. I am a little nervous because when I walked in this morning, Kyara was breathing about 80 times a minute! This is extrememly fast. For one minute, try to breath that fast. I tried and I thought I would pass out! The nurse gave her morning meds, and now she is resting comfortably again. Thank God!

Dr. Laurie, the neuro-psych doctor, was in this morning. She said Kyara was following the nurse with her eyes and she walked around the room! Tracking?!? She also looked at a picture that Dr. Laurie showed her. These are good things. I pray this is just the beginning of good things to come.

As you may be aware, we are stying at the Ronald McDonald House of Ann Arbor. While we are guests there, we have rules and chores that we have to do. Each day we have a chore in the house such as cleaning the playroom, vacuumming a certain area, sweeping and mopping the kitchen, etc. It is on a rotation, so each room has a chore and every 5 days or so we have a day off. I mention this for two reasons... First my mom has been doing our chore everyday. One thing I don't have to worry about. What a blessing! Secondly, there is a group coming in today who stayed at the RMH in the past. They are providing dinner tonight, but they are also doing EVERYONE'S CHORE! This is a huge relief to many families at the RMH. One less thing to think/worry about. Guess what our chore is today..... we have the day off! :) Literally, on the schedule, today was going to be our day off, anyway. Still, it is such a fantansic idea! I know many of the families are very greatful.

Monday, March 23, 2009

Gunars and Skylar Are Back Home

I was so sad to see them leave. I hate taking Gunars and Skylar back to the airport. It is so hard to say goodbye. I am really anxious to get back to Georgia so that we can be closer again! Overall, though, we had a good weekend. Skylar and I went to the Y on Sunday to swim and Gunars spent time with Kyara. When it was time to pick him up to go to the airport, she turned her head toward him. She was sad to see him leave. This is the good and the bad. She is aware of what was happening, and she did not like it.

I stayed with her last night, and it was a bit rough. The doctors are going down on Kyara's sedation medication, and she did not sleep very well last night. I am hoping they will get this figured out! Today they are planning on switching her from an ativan drip to valium by her jtube. They are going to go up a little on the valium dose so that it is equivalent to her previous ativan drip dose. If all goes well this morning, they are going to take the breathing tube out. Yeah! Her abdominal xray films are looking better, too. The pneumatosis is not obvious anymore, so she is getting better in the colon area. The plan is to start feeds tomorrow. We will see if that happens or not. Sometimes the doctors have plans for the next day, that don't actually happen for a couple of days. I would like for them to start feeding her, but only if she is ready.

This morning I watched the sun rise out of Kyara's window. Wow, it was beautiful. Amazing the painting that God puts on display for us everyday, and most mornings I am not awake or aware of it. It was truly beautiful. God creates miracles each day. I pray Kyara is on His list.

Saturday, March 21, 2009

Family Together Again!

Last night Gunars and Skylar got in. I was overjoyed to see them, hug and kiss them! It has been tooooooo long! Today we plan to take Skylar and Kassey swimming at the local YMCA and then to Chuckie Cheese. Nothing like spoiling Skylar while I have the chance.

Kyara is still resting comfortably. When she poops, she gets very upset. Her face wrinkles, her tone kicks in, and she looks like she is crying. I wonder if the air in her colon is still hurting her or if she just doesn't like to poop in the diapers. She also gets upset when the respiratory therapists have to adjust her tape. It is on her face and she doesn't like them pulling it off. After a while, though, she settles back down.

The doctors are still weaning Kyara off medications and hopefully by the end of next week we will have a better handle on her meds. I pray the colon continues to get better and that Kyara improves. I pray that as they wean the ativan drip, she does not start storming again and that the doctors find the right combination of drugs to reduce her tone. God is good and I believe he is giving Kyara a fresh start.

Thursday, March 19, 2009

Kidney Ultrasound and Contrast Follow-Thru

Today was a day of tests. Kyara had some yeast in two urine cultures, so the doctors wanted to make sure it was not in her kidneys, so they did an ultrasound. The results were negative, so the kidneys look good. Yes! The problem with this yeast is that it is resistant to normal medications. The doctors are discussing doing bladder washes to "wash" out the yeast.

She also had a contrast study to day to see how her bowels are doing. They injected contrast in her j-tube (into her small intestines) and then did x-rays every hour all day to watch the contrast move through her system. When it finally reached the rectum, they were finished with the xrays. They said the mid and lower sections of her colon are looking good. The upper section still has air, but it is getting better. It looks like we are moving in the right direction.

Kyara has also begun to break through the sedation medication some. She is still sedated most of the time, but she has brief periods where her eyes are fluttering and cracked open some. She has also taken to "crying" some before and after pooping. She can't make sounds with the breathing tube, and there are no tears, but her face is all scrunched up like she is crying. Her mouth is open and she looks like she is crying. She is also moving her feet some when I stretch her. All positive things as far as I am concerned.

Gunars and Skylar are coming in tomorrow and I can't wait to see them! It has been much too long!

8 weeks

A quick update...

It is 2:00am and I am having a hard time sleeping here. Kyara is doing fine. In fact, I would say she is improving. The pneumotosis (air in the lining of her colon) is finally starting to go away. The air in her colon is better, too. She is not as distended!! Yippee!!

Gunars went to Scottish Rite today to see the rehab facility and he was impressed with it. We just have to get Kyara stable here so we can head home to GEORGIA!

Please keep up the prayers for Kyara and for our family. I feel we are all getting stronger by the day!

Tuesday, March 17, 2009

Sleeping

Kyara is still on the ativan drip so she is sedated and getting some rest. She has developed a fever last night and again today, so they are still checking on infections from the bile episode on Sunday night. She is going to stay in the PICU for a while...the doctors are going to work on getting her off some medications that they feel are not working for her neurologic issues and they plan to keep her comfortable while all the switching is going on. I am relieved that they will be watching her closer.

My dad was here for the weekend and went back home last night. It was a great break to have him here and I appreciated the time to sleep at nights. He spent each night with her! Gunars and Skylar are coming up on Friday and I can't wait to see them! Kassey has spent time outside playing (can you believe it was 70 degrees!?!?) and Bunny is running around trying to keep up with her. Thank goodness they have a fence around the playground here. No where for Kassey to run!

Tomorrow the doctors are going to check Kyara's thyroid levels. It is a long shot, but hypothyroidism can cause air in the colon wall and in the colon, so they are going to check it. Kyara's colon is still full of air and she still has air in the wall. I pray this will resolve. Another thought is that the air is caused by medications, so perhaps by getting rid of some and decreasing the levels of others, the air will decrease. I pray they get it all figured out...SOON!

Monday, March 16, 2009

Doctors, Doctors, and More Doctors...

Last night Kyara was re-intubated and they put another NG tube down her nose and into her stomach. The idea was to drain everything out of her stomach so that she can't throw it up. She was not really throwing up, rather is was pouring out her mouth and nose. Anyway, they got both tubes in last night.

This morning, she was sleeping like an angel. I was shocked by how comfortable she looked and I was looking forward to her having a peaceful day. Unfortunately, this is not what happened. The NG tube got clogged by her bile, so they had to put in a new one, and she started storming AGAIN. The nurse, Sandra, was great about pushing the doctors to get Kyara more comfortable. I met with the pediatric surgeons, the PM&R (rehab) doctors, and a doctor who works on a palliative care team. Their goal is patient comfort. When the palliative care doctor saw Kyara, he really put the squeeze on the other docs to figure out how to make Kyara more comfortable. Finally, the surgeons and PM&R got together, went over all of her meds, and are discussing which ones we can wean off. This could help her colon...too many meds that are not doing her any good could actually have negative effects on the colon. The surgeons have also decided to start Kyara on Microfungen. This is a whopper of an antifungal medication. I hope this will help with her colon issues.

Right now, Kyara is on an ativan drip which is keeping her sedated and comfortable. As we wean off the drugs, we will see how she reacts. Then we will wean off the ativan. I pray this is a step in the right direction. I feel better having her in the PICU because she has one-on-one nursing, a cool room (she is having a hard time controlling her body temperature, especially when she is storming), and a private room (decreased noise level!). I am looking for the positives in this situation, and I think they are there.

I also believe Kyara is in there. During a "twilight" time (small time when she is not really awake, but not really asleep) she responds to me. She has squeezed my hand, moved her feet, even opened her eyes on really looked at me. I pray they can get Kyara medically stable so we can move on to the therapy aspect. Speaking of therapy... we have had people asking about bringing Kyara home... That is our goal. We have to have her medically stable before we can do that, though. At the point she is discharged from pediatric surgery's service, we hope to transfer her home to Scottish Rite for intensive inpatient rehab. Thank you so much for all of the love, support and prayers! We greatly appreciate them, and I know that with God's help, they will figure Kyara out!

Sunday, March 15, 2009

Intubated Again

Tonight has been rough. We went down stairs for a CT scan and Kyara started oozing bile again. She had bile coming out her nose and mouth. I suctioned her for over an hour and close to a half a liter of bile out of the back of her throat. She sounded at times like she was drowning in her bile. When the doctor came in I told him I was concerned about her airway. He agreed and decided to call in the pediatric surgeon. So, at 10:00 tonight, the pediatric surgeon came in and intubated her. She is heavily sedated and will be sleeping for a while. I see this as a positive move, she is so much more comfortable now. The doctors have a plan for the pneumotosis (the air in her colon wall), and she is getting some rest. Her heart rate is back down, she is not struggling to breathe, and her blood pressure is back down to a normal level. I am trying not to see this as a step backwards, but an important step that will help her improve. I pray this will lead to healing in the bowels, and that she can then concentrate on healing in her brain. I believe God knows what he is doing. He allowed the doctors to put her in PICU before she began having problems and she was in the right place for it to be taken care of quickly. Please pray for Kyara's recovery. She has been through alot!

Back in the PICU

We are back in the PICU. Last night, Kyara's oxygen saturation levels dropped and the nurse put her back on oxygen. Then her heart rate went way up and her breathing rate has dramatically increased. She is breathing 70 times a minute... normal is 20. Her heart rate was between 180-200 beats per minute. This is extremely high. Since being in the PICU, her heart rate has dropped back down to 140-150s. We are going to get a CT scan on her chest and abdomen to see if they can get to the bottom of this. Please keep Kyara in your prayers as we fight these new issues.

Saturday, March 14, 2009

Going Outside




It is 50 degrees here and sunny... a heat wave! So my dad and I decided to take Kyara outside for some fresh air and sun. It was good just to get out. I spent time this afternoon stretching her and talking to her. Some exercise is good for the soul!




It has been really nice having my dad here this weekend. I am completely pooped and I know it has been affecting my attitude, so it is nice to have a break. I slept in the morning at the RMH and it was nice. My dad spent the night with Kyara last night and will again tonight, so I am planning on sleeping in some again tomorrow. Tonight we had a girls' night out. Kassey, my mom, and I went out and blew off a little steam. It was a very nice, relaxing evening. Good food, a little drink, and wonderful company can help a person's attitude!

Friday, March 13, 2009

Kyara is Bamboo

I read this story on another child's blog and I really liked it...

One day I decided to quit.
I quit my job, my relationship, my spirituality... I wanted to quit my life.
I went to the woods to have one last talk with God.
"God", I asked, "Can you give me one good reason not to give up?"
His answer surprised me.

"Look around," He said. "Do you see the fern and the bamboo?

"Yes," I replied.

"When I planted the fern and the bamboo seeds, I took very good care of them.
I gave them light.
I gave them water.
The fern quickly grew from the earth.
Its brilliant green covered the floor.
Yet nothing came from the bamboo seed. But I did not quit.
In the second year, the fern grew more vibrant and plentiful.
And again, nothing came from the bamboo seed. But I did not quit on the bamboo," He said.

"In year three there was still nothing from the bamboo seed.
But I would not quit.
In year four, again, there was nothing from the bamboo seed. I would not quit," he said.

"Then in the fifth year, a tiny sprout emerged from the earth. Compared to the fern, it was seemingsmall and insignificant... But just six months later, the bamboo rose to over 100 feet tall.
It had spent the five years growing roots. Those roots made it strong and gave it what it needed to survive.

"I would not give any of my creations a challenge it could not handle."

He asked me, "Did you know, my child, that all this time you have been struggling, you have actually been growing roots?"

"I would not quit on the bamboo.
I will never quit on you."

"Don't compare yourself to others," He said.
"The bamboo had a different purpose than the fern.
Yet they both make the forest beautiful."

"Your time will come," God said to me.
"You will rise high."

"How high will I rise?" I asked.

"How high will the bamboo rise?" He asked in return.

"As high as it can?" I questioned.

"Yes." He said. "Give me glory by rising as high as you can."

I left the forest and brought back this story.




This story really spoke to me. I pray Kyara is like the bamboo. I pray God is creating her roots and when the time is right she will blossom. God is great...

Thursday, March 12, 2009

Storming and Uncomfortable...

Today has been rough. Kyara has been storming again. She is breathing at a extremely high rate, she's sweating, moaning, and so tight most of the time only her head and her heels are touching the bed. Speaking of her feet, good and bad. First the bad... she has pressure sores from the splints we have been using to help maintain her range of motion. One in particular is looking pretty bad. These sores go all the way to the bone and have to heal from the inside out. So we have been keeping Kyara's feet "floating" so her heels won't touch the bed, the mat in PT or her wheelchair. The good news...we put her tennis shoes on her feet for the first time the other day and it made her look like she was ready to take off. It was just so good to see shoes on her feet!

I talked with LOTS of doctors today. They are all trying hard to figure Kyara out. She is not the normal case. Pediatric Surgery team is trying to figure out the air inside the wall of her colon, and the air in the colon itself. They have no idea where it is coming from or how to stop it, so that is frustrating. PM&R is working on the brain medications and trying to stop the storming without completely "snowing" her. I asked to have a GI consult, too. They have some different ideas of where the air is coming from, so we are looking into these possibilities as well.

PM&R showed me the MRI today, and to be quite honest, I wish I hadn't seen it. I was struggling with the decision yesterday as to know the results or not, and I wish I had picked the later. It showed significant shrinkage of the brain. Severe is the word they used. Severe anoxic brain injury. This stinks. I am going to keep my eyes on Kyara, though. That is the important picture, not the MRI. And today, I believe she SAID "Hi." Not just mouthed it, but vocalized it. We were in speech and Kassey and my mom came in. We took Kassey out of the stroller and she was saying "Hi" to Kyara. Maria (I think) told Kyara to say hi to Kassey, and she made a noise that all three of us turned at looked at her and then looked at each other. Either my mom or Maria said, "I think she just said 'Hi!'" All of us heard it. Kassey is now required to come to therapy, too :)

Wednesday, March 11, 2009

7 Weeks In...

I know, not a very creative title, but I am tired. Although Kyara slept GREAT last night (from 9:30pm-8:00am), I did not sleep much at all. I was too worried about today. Kyara had another procedure today. They had to put her under general anethesia to do an MRI and try to put in a new PICC line. She had to lay perfectly still for the MRI and since she is not able to do that, they had to sedate her. We don't have the official results from the MRI yet, but the PM&R docs said there was not any gross changes. It looked like they expected. There could be subtle changes (positive or negative) but we won't know until we hear the report tomorrow. On one hand, I am nervous about these results and I'm anxious to hear what the final report says, on the other hand, I know the results do not matter. All that matters is how Kyara behaves.

The PICC line was trouble today. After 2 hours, I expected Kyara to be in recovery. The MRI was to take 1 hour, and then there was travel time to another part of the hospital to get the PICC put in in interventional radiology. We guessed that would take another hour. So, at about the 2 hour mark, I asked how she was doing and the clerk on the floor called down. They said she was done and would be going to recovery in the next 15-20 minutes. Then it would be 30 minutes or so before I could see her. Well, that was not accurate. They had not started the PICC yet. Then, they could not get the PICC in. Because Kyara has had several PICC lines, her subclavian veins (veins close to your collar bone) was obstructed with scar tissue. They ended up putting a central line in her neck. I was concerned about blood flow back to her heart if her veins were obstructed, but the doctors said that her body has created smaller veins that bypass the obstructions, they just can't put a cathater in them. Gunars mentioned that its like what her brain is doing, building new pathways to bypass the injured parts. Isn't the body amazing? Isn't it amazing that God creates these new pathways?

Kyara is back in her room, and I pray she has a good night. I am exhausted, having not eaten most of the day or slept much last night. I am going to bed and praying for new pathways.

Tuesday, March 10, 2009

Things for Surgeons NOT to Say to Parents

The x-ray yesterday (Monday) showed that the PICC line was pulled out too far and needs to be replaced. The best PICC nurse in the hospital came to try to thread a new PICC line over the old one (so we wouldn't have to start completely over) but she was unsuccessful. So tomorrow the surgeons want to take Kyara back to the operating room and put a new PICC line in under xray. She may have to go under general anestetic because she has so much muscle tone, they are wondering if that is the reason she is unable to thread the new line.

Yesterday during PT, Kyara, Dan, or I pulled out Kyara's j-tube. They were able to put a new one in without difficulty, but it was a bit like the straw that broke the camel's back. I lost it a bit. I am frustrated with this situation.

For a bit of comic relief, I began thinking of things the doctors have said that have made me mad. A little masochistic, I know...odd sense of humor.

1.) I understand how you feel.
2.) I have a lot of time invested in Kyara, too.
3.) Getting upset has no purpose.
4.) We don't know what is causing the air.
5.) It looks like you have an infant again (okay, this one was said to Bo's mom, but really...what was that doctor thinking?)
6.) Yeah, the surgery was a success.
7.) (As I am crying after her "successful" surgery) Uhhhh, should I get a nurse or something?

Really, I think surgeons should go through a class on what to say to patients and their families. I could help...unless you have walked in the parents' shoes, DON'T say you know how they feel. Do not pretend to care as much or more than the parent does. If a parent is crying, sometimes placing a hand of comfort and SHUTTING UP is the best course of action!

Now that I have vented some, I feel better. I have not written in a while because I was too caught up in emotions. Frustration, anger, concern, grief, saddness, etc.

Tomorrow Kyara is having another MRI done. This is to see what her brain is doing and how bad the anoxic injury is. It will show brain shrinkage and they will be able to see what part of the brain is injured by the shrinkage. The PM&R doctor explained that because Kyara has not been stable for at least 2 week continuous period, we can't not know how Kyara is progressing. On the outside, they are not impressed by her recovery. But there is still hope. We do not know how she is recovering on the inside. It may be that she is in so much discomfort, it is masking her recovery. I pray that is the case. Either way, the MRI will not show us this. Only her behavior will show us her recovery. I pray that God will place his hands on Kyara and help her recover. Help her brain make new pathways and for her to begin to respond to us. Kyara has been on a rollercoaster here and until she settles, we will not know where we will begin the next ride.

Sunday, March 8, 2009

Long Weekend

This weekend has been hectic. We saw Dr. Coran on Saturday morning and he has decided that the oxycodone that Kyara is on for storming is the culprit for her distended colon. What a catch 22. Something that helps the storming, hinders her bowels to a point that she is in pain, which contribute to storming. It is a vicious cycle. So, we have decided to start weaning her off the oxycodone. Saturday, they tried skipping every other dose. By Saturday night, I was convinced this was NOT an appropriate way to go about it. Oxycodone has a 4-6 hour window of effectiveness, and by skipping every other dose, Kyara was not getting any help for 2-4 hours. She was getting a dose every 4 hours, and by skipping every other dose, she was only getting it every 8 hours. We talked with the doctors Sunday morning and convinced them to give it every 4 hours, but to half the dose. This way she is still coming down on the drug, but not left high and dry for hours in between doses.

Tonight Kyara has been running a fever. She has been very uncomfortable and groaning most of the day, very stiff, and she looked like she was in pain or discomfort. I think the fever is due to her working all day. It must be exhausting to have your muscles constantly in contraction and to groan and strain like she does. I can't image the work her body is doing. To make sure she is not developing any infections, the doctors ordered chest xray (it was normal) and lab cultures. So the nurse came in when Kyara had finally settled down and thought that would be a great time the cath her. She said it would be very difficult to do it when Kyara was tense, so now would be best. Fine. But when she was moving her, she pulled out her PICC line. Not fine! So, xray had to come back to see if it is still in an ok position. If not, they will have to place a peripheral IV for tonight and get a new PICC line tomorrow. This is frustrating.

It was nice having Gunars here this weekend, though. We took Kassey to JCPenny to get her 1year old pictures done. Better late than never. Some of the pictures were really cute! Skylar spent the weekend with Aunt Missy, Uncle Allen, Curtis, Ansley, Zoe, and Preston. They had a sports, movies, playdate, Sunday School, filled weekend. I know she had fun! I hated not seeing Skylar this weekend, but I am happy to keep things as normal as possible for her. She scored 2 goals in her soccer game on Saturday. Yippee!! Thanks Leonard Clan for letting Skylar stay the weekend!

Gunars got back home tonight and I already miss him. We are both so thankful for the support that has been shown our family. Times here are tough, but it helps knowing that so many people have our backs. Thank you so much. Please continue to pray for Kyara's recovery. I would like to see her respond more. It would give us a new rung on the ladder of recovery to grasp onto.

Saturday, March 7, 2009

Gunars is Back in Town

Gunars flew in last night and spent the night with Kyara. Before I left last night, her stomach had become hard and very distended again. I asked the nurse to page the doctors because I was not comfortable with how she looked. She was also whining and obviously in discomfort. They got an xray and said she was full of air and poop. Right after xray, she "let some fly", calmed back down, and went to sleep. I left the two sleeping beauties and headed back to RMH for some shut-eye of my own. Gun said Kyara slept from 10pm-9am!!! WOW!! Fantastic!

Dr. Coran is back in town and will be coming by to see Kyara this morning. We will see how that goes.

Thursday, March 5, 2009

Car Seat Trials

Today in therapy, Kyara had two new things happen. First we put her in the carseat that we hope insurance will pay for. This is a special carseat for "special" kids. It is huge. When we actually put her in, I went through a bit of shock. I think I really came to the realization that Kyara is (for now) disabled. This is real. My face must have shown my surprise/shock/upset because Dan said to me..."we have to get ready for her as she is now. This does not mean this is the way she will always be. I am not giving up on her." I swallowed my anguish, took a deep breath, and plunged forward with learning how to install this beast into my car.

Second, Kyara had her right elbow casted. She has a lot of tone in her muscles, and the OT, Donna, was afraid that Kyara would lose the use of her right elbow if we didn't do something for her. Her range of motion in that arm is decrease because she has it pulled up and into her body most of the time. So, they made a cast of her arm and then cut it off to create a splint. This is alot like what Dan did with Kyara's feet and ankles.

We also did not give Kyara one of her medications this morning. I think it made a difference in how she acted in the morning therapies. She was much more awake and seemed to participate better, especially in speech. She was mouthing at us again (which she had stopped doing last week), and even tried a couple of tastes of pudding. The first two tastes that Maria put in her mouth, Kyara moved around some in her mouth. She looked like she was tasting it. The third one, we asked her to open her mouth, which she did (huge feat in and of itself!) and Maria put a taste farther back on her tongue. This one didn't go as well and she gagged on it. Maybe too much, too soon, but I was still pleased with the session.

My dad left yesterday and got home safely last night. He was a big help and allowed my mom and I to get some much needed sleep! Tonight Gunars and Skylar went to Ansley's (our niece) birthday party. Skylar said she had a great time! HAPPY BIRTHDAY, ANSLEY!!

I go through different feelings when it comes to Kyara. At times, I am at complete peace with her and I just KNOW she will get better. Other times, I am in disbelief that any of this happened. One thing I know for sure, I will NEVER give up on her. Until the day I die, I will NEVER give up on Kyara.

More Sleep

Tuesday night Kyara slept from 8:45-6:45 in the morning! 10 hours! That is huge!! Last night she slept from 12:00-6:45am. She then had a couple of blow-outs, x-ray, and labs drawn, so going back to sleep was difficult. So we seem to be making some progress in the sleep department.

Kyara is also not nearly as agitated as she was last week. Yesterday in therapy she was only mad when they were actively stetching her. When they stopped, she stopped moaning. Very appropriate! This morning (Thursday) she is awake, looking around (but not really focusing on anything), and she is calm. Therapy this morning at 9:00, so we will see how that goes. We did have a chance to get her in the car seat yesterday, so we are planning to do that this morning.

The air in and around her colon is still there, but the docs said it looked a little better yesterday. They just took xrays, so I am waiting for the report. I was told it would be a couple of hours, so in hospital terms, that means late this afternoon or maybe tomorrow morning :) I pray she stays asymptomatic, and it resolves.

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.

Monday, March 2, 2009

Gunars and Skylar made it home safely tonight. They had to wait for 45 minutes in Atlanta on the runway until a gate was open, but they made it home and I am thankful for that! We had a very nice weekend together. I was thrilled to get to have them for one more day, today. As always, I was sad to see them leave. Next weekend, Gunars is going to come back up, but Skylar is going to spend the weekend with Uncle Allen and Aunt Missy. She is looking forward to "sleeping in Curtis, Ansley, and Zoe's room. Preston can't sleep with us 'cause he is too little. If Zoe doesn't go to sleep, Uncle Allen and Aunt Missy take her back to her room. Then Zoe waits until they are asleep and comes back to Curtis' room. Hehehe!!!" I think they are in for a fun weekend! Thanks Allen and Missy!

Kyara had a pretty good weekend. Last night was tough, though. She slept until 2:00am and then was awake the rest of the night. My dad stayed with her, sorry Dad. Therapy today was more of the usual. She did cry some with Dan and Donna. It was a different noise than the usual groaning and growling, so it was exciting. She only did it once or twice, but hopefully it is the beginning of new things to come.

We also have a new batch of doctors. The Pediatric Surgery attending (head) doctor changes every week. The residents change every month, so we have new residents that will be working on Kyara. We also have new PM&R (Rehab) doctors. Our last doctor left for maternity leave and the new one spent some time this afternoon getting to know Kyara. Don't you know, she came while I was taking Gunars and Skylar to the airport. That figures. I have high expectations for the new docs...I hope they are up the challenge. Dr. Rita (PM&R) seems to be on the ball, so I look forward to having a fresh pair of eyes on Kyara. We will see where it all goes....

Sunday, March 1, 2009

Pooping, Farting, and Sleeping...Oh,My!!

This weekend has been...good. Kyara has been sleeping most of the weekend. That is great! She needs the rest and she is finally getting some. She has been sleeping from around 7pm-3am and then again from 8am-11am. This is ALOT of sleep compared to what she has been doing. She is also drifting in and out of sleep throughout the day. Even when she is awake, she has been much more calm than last week.

She is also pooping and farting (passing gas, pooting, shaking her britches, kicking the tires, relieving the pressure, fluffing, tooting, and on and on...). Maybe she is pooping too much? I think she has gone 6 times in the last day. We are a little concerned with the appearance of the poop, but as she is getting more tube feeds and less TPN (nutrition through her IV), it should get better. Kyara does NOT like having a dirty diaper. She gets very agitated and complains before going, and after she finishes. I would love to try to get her on a potty when she starts moaning and see if she will go on it. Of course, we have some time before we will be able to do that. She has way too much tone and no control of her posture, so sitting on a potty would be very difficult.
Her complaining makes me think that she remembers being potty trained and she doesn't like the way it feels to go in her pants.

My dad got in last night. He is going to stay until Tuesday or Wednesday, so he is going to be a huge help. I am glad that he got in without any troubles. Gunars and Skylar are still here (Sunday night). We got a call from Delta announcing the cancellation of their flight tonight. They have seats on a flight tomorrow night, so I am enjoying them being here an extra day. I understand there is a HUGE snowstorm at home. When I told the nurses that people were rushing to the grocery store for milk and bread, they laughed. 2-4 inches up here is a joke. But here is the funny thing....there is NO SNOW in Michigan!! How is it that there is snow in Georgia and none up here? It has all melted! Funny...