Day 10

Here are some pictures from yesterday. Dan is working with Kyara and helping her sit in Gunars' lap. In the other one, Tedra is fixing Kyara's hair after Dan found a wheelchair that will fit Kyara. It was a busy day.

Today was a bit more relaxed. Not a whole lot of change. We got Kyara up and she sat in her chair for a few hours. The doctors took out her arterial line in her leg, so one more thing down. They are going to check on her right chest tube tomorrow or Monday and consider removing it at that time.

Kyara is still not responding to commands, she has been fairly agitated today. Sadly she did not sleep much last night and did not take a nap today. Hopefully she will sleep well tonight. She seems to hear sounds, she is startled by noises, but she does not turn her head in the direction of the noise. She is also still not tracking with her eyes, and today she did not seem to react to light (when they shine a light in her eyes), but they said that with a brain injury, you see some ups and downs with progress. Sometimes they show progress, then it seems to disappear, then comes back, etc. So we are holding tight to the idea that it DID happen and we believe it will happen again.

Kyara has so much to say, we are just waiting to hear it. When we move her or stretch her, Kyara moans and growls at us, which we secretly LOVE! Today she made a very strong expression on her face that was just...Kyara. I know she is in there and I believe she will tell us how it is. I am looking forward to that day.

Day 9...Out of Bed

Today has been one heck of a day. Kyara has been through so much! It all starts with an X-ray at 6:30 am, then rounds (when the doctors come in, discuss the plan for the day and poke at her some) at 7:30 am. Then, we had to get Kyara on a stretcher and downstairs to radiology for the swallow study at 9:00. With all of the tubes, wires, the ventilator, and monitor, it takes a while to get her ready!

I know, I know... what about the swallow study? What happened? Well, no leaks! That is great, but leaves me puzzled as to how her cardiac arrest happened. I suppose it is possible she could of HAD a leak and now it is healed. Either way, it doesn't matter anymore. The better news is that they were able to pass a feeding tube into her stomach! This will be a great help for a couple of reasons. Obviously, it will be beneficial for feeding (instead of using IV nutrition), but it will also act as a guide for future dilatations, so they will not have question as to whether they are in the stomach or not. I had some apprehension about the placement of the tube, but I was assured by the doctors and the radiologist that it is in the right place. I am a total "Nervous Nelly" now, but I think I have earned the right to be that way.

So, the feeding tube is in and I was thrilled. I left Kyara with Gunars and had a few errands I needed to run. I had forgotten my purse, so I ran back up to Kyara's room and neurology had been there. Kyara responded to the penlight flashed in her eyes. She blinked when it was shone in her eyes. She did this consistently when the neurologist tried her, so we are pretty sure she was really reacting and it was not just coincidence. I then had to admit to him that she did that last night and in my excitement about the feeding tube this morning, I had forgotten to tell him. Sorry! So I left and then around 1:30 Gunars text me. They are taking out her breathing tube! WHAT?! Really? Now?! I got back as soon as I could and when I walked in Kyara was "SITTING" IN GUNARS' LAP! No breathing tube and maintain her oxygen saturation levels without any supplemental oxygen! Wow! I was thrilled!! I say the word sitting, but take it in a loose sense. Think of a toddler who you are trying to put in a carseat and they are trying not to go. You know how they stiffen up? That was what Kyara looked like, but I was so excited to just have her out of bed!

Mr. Dan came in around 3:00 and stretched Kyara out. She was not so thrilled with Mr. Dan, and I love it. Kyara GROWLED at him! If you have ever seen Kyara mad, I mean really mad, you know, she growls. Oh my, I almost peed my pants! Mr. Dan decided to go down to his stock room and see if he could fit Kyara for a wheelchair. He came back with a cool chair that fits perfect. It hold her head, has chest straps to hold her up, leg straps for her thighs, and a strap for her shins. It also can lean back to help her hold her head in place. Very cool. So we got Kyara settled in her chair and she chilled for the next 3-4 hours sitting in her chair and out of bed!

Today has been a very eventful day. We are very encouraged by Kyara's progress, but I do want to make something clear. Although Kyara seems to be more aware of her surroundings, she is still in a big brain fog. She still is not responding to commands, she is still not tracking with her eyes. She is improving everyday, but we don't want to get ahead of ourselves. Kyara has a LONG way to go.

We also received a carepackage from Kyara's teachers, Mrs. Carlisle and Ms. Laurie from Willis Road Elementary. It was perfect. They sent pictures from school, smells from class, cd of music from class, book that Kyara liked, and a cassette tape that brought tears to our eyes. When we played it for Kyara and she heard her classmates, her eyes opened a bit wider. Thank you so much! It is PERFECT!!

I took pictures today, I will post them later. Take care and thank you again for all of your continued prayers, love and support.

Day 8...Hop on Pop!

My dad, Pop, has joined us here in snowy Ann Arbor. He drove in today and we are so thankful he made it here ok. There was a terrible storm on his way up. He will be a much needed source of help.

Kyara is making small improvements everyday. This morning Dan came in to see Kyara and said he felt she was making more purposeful movements. Today the doctors removed her left chest tube (she still has a right chest tube) and the femoral IV in her leg. These were big moves in the right direction for getting tubes that could cause infection out of her body. Both of these tubes were placed during Kyara's cardiac arrest and were not sterile. Luckily she has not had infections from them, but the docs figure... why risk it. Her left lung was looking good and she now has the PICC line, so out the tubes went!

Tonight, after everyone else left, Kyara got very agitated. She began by having and increased heart rate and a slightly elevated blood pressure. I could feel her arms beginning to stiffen and her hand was gripping my finger tighter. She also began to sweat some and her temperature was rising. Kyara's eyes were open and it seemed like she was looking...there was an energy behind her eyes. Well, I read to her from some healing prayers that we got from the Deacon in the ICU, and she didn't seem to settle down. The nurse came in so I asked her about it. She suggested check Kyara's hospital pants to see if she was wet. After we changed her, Kyara was flat out MAD! Her heart rate and blood pressure skyrocketed and she had a terrified look on her face. Her body was a stiff as a board! The nurse quickly spoke with the Peds Surgery Fellow, who happened to be sitting at the nurses' station and they got her some medication to help her settle back down. The nurse explained to me that in her experience with kids waking up from coma-like states, this is a pretty typical response. I hung on her every word. WAKING UP?! I love hearing that...say it again, say it again! We have been noticing that Kyara is much more aware of her environment the past few days and we believed that she was waking, but to hear someone else say it too is just.... wonderful! Kyara settled down pretty quickly after getting the medicine and I hope she will sleep well tonight, she needs the rest. The air is very dry in the hospital room and everytime I cough, Kyara opens her eyes. She shuts them right back and goes back to sleep, but I love to see her respond. Do it again, do it again. Ok, I am going to let her sleep.

Tomorrow morning at 9:00 am the doctors are going to do a swallow study to see what the heck is going on in her body. If it looks like they can, they will try to place a nasogastric feeding tube in her stomach. This is the same tube she had last time we were here and will allow them to feed her food (liquid nutrition) instead of the nutrition through her IV. This would be a best case scenario, we will see tomorrow what they find. At this point, it is not my top concern. I know in time they will figure the esophagus/stomach issues out. My primary concern is Kyara's brain.

Thank you all for the love, support, and prayers you have sent our family. We are so thankful and blessed. One thing is for sure, Kyara has brought many people together and we are overwhelmed by the love that has been shown to us. Here is to a good today and a better tomorrow.


Oh, by the way....

I have been asked to put our address for the Ronald McDonald House on the blog, so here it is...

Kyara Dzenis - Room 29
Ronald McDonald House of Ann Arbor
1600 Washington Heights
Ann Arbor, MI 48104

Day 7...PICC Line Is In

The nurse today was able to get the PICC Line in Kyara left arm, so hopefully she will be able to have the central line in her leg taken out. The central line was placed during her arrest, so it was emergent and not completely sterile.

Both the neurologists and Dan were pleased with Kyara's movements today. She had more purpose in her movements. Dan bent Kyara's knees to a 90 degree angle and told her to hold them while he gave them little pushes. She held them there. Later, she did the same for me, so we are encouraged by these things. Tomorrow Dan wants to help her sit on the edge of bed and see if that will stimulate anything. Each day she is getting a little better. Although she is still not tracking with her eyes, she is startled at times by sudden noises. We think Kyara is hearing better.

We are looking forward to tomorrow and seeing what Kyara has in store for us.

Day 6...Happy 1st Birthday Kassey!!

I know this is Kyara's carepage, but we do have two other girls, too. I think Kassey's first birthday is a day that we cannot ignore. You only turn one once, and as I am learning, making memories is what life is all about. My mother says that to me. When Skylar and Kyara had a picnic in Skylar's bed last week before we came up here, I was a little annoyed that they took food out of the kitchen and into Skylar's top bunk bed. They were having such a good time, though, and my mom said to me "Making memories." How true. When Kyara is well, I will be the first to make a picnic in Skylar's bed for them! Anyway, even though I didn't feel much like celebrating, we had a party in Kyara's hospital room. Kassey LOVED the cake (as you can see in the picture) and Skylar loved helping Kassey open a few gifts. ChildLife, an organization here at the hospital, brought Kassey a couple of gifts and balloons, too. They are so good to us here!

Kyara seemed more relaxed for most of the day today. Her muscles were not as tight, and she seemed more at peace earlier today. This afternoon a nurse that specializes in putting in PIC lines came in. She used ultrasound to find a good vein in Kyara right arm and tried twice. Each time she got in the vein but was unable to thread the guide wire through it, so she will come back tomorrow and try again. When they are putting in PIC lines they sedate Kyara so that she will not move, so when Dan and neurology came in, Kyara was still very sedated. It was hard to get a good assessment of her today. Overall, they felt she had better control of her muscles and movements were more controlled. This is good. Kyara is still not tracking with her eyes or consistently responding to demands. I just FEEL that she is in there and can't quite get out. Tonight when the nurses were giving her a bath, Kyara was MAD. Her heartrate increase, her blood pressure rose, and she was moving all over the bed. Her legs were going and her arms were going. She wanted out of there. She was moving her head and although she was still not tracking with her eyes, I was surprised by the movment she had. This is by far the most movement she has had.

Some not so good news tonight, though. I am not sure what it may mean, but Kyara has started to have clonus again. When we stretch her foot up into dorsiflexion (away from pressing the gas, like lifting up her toes), her foot and lower leg shakes. She was doing this a couple of days ago and it had stopped and now she is doing it again. As I said, I am not sure what it means, but I know the neurologist made note that she had stopped doing it. Hopefully it is not a bad sign. I think all of the other posititive signs outweigh this potentially negative one, anyway.

You know, I think God places people in your life to help you when you need it most. I feel this way about some of the nurses here, Tedra and Julie - who have asked to come in on their days off to take care of Kyara. I know God put Dan back in Kyara's life to help her - and me! He is so positive and pushy, he believes in Kyara and the potential for recovery and I find myself really relying on hearing this from him. He has been such a comfort and I look forward to him coming in each day to see Kyara and bring the energy of recovery! Dr. Tony, who took care of Kyara in November and December came in to see her today (he is doing a rotation with adults now). Seeing him was a breath of fresh air, too. Kyara had a crush on Dr. Tony. She liked the way he would wave to her. She was so cute about it.

Well, we are still in the waiting game. Thank you all for the information on rehab centers. We will continue to research our options. We are such a blessed family and we are completely overwhelmed by the love that has been shown to our family. I know that some of you have tried calling, we may or may not have answered. Please understand that this has been very difficult and talking is extremely hard. We love you all and we will try to return calls when we feel we can do so without breaking down into tears.

Thank you for the prayers and please continue them. Please also keep Dee, my sister-in-law's mother, in your prayers. She had open heart surgery today. We have a long way to go and need the help from the Big Man Upstairs!

Day 5...Dan is back!!

The neurologists came back to do their rounds and examinations on Kyara. They were not as uplifting today as they have been. Although they are considering Kyara a success in surviving the cardiac arrest, her EEG has actually gotten a little worse. She was considered moderately sluggish, but they are now rating her as severe. The EEG measures brain wave activity, so this has been a blow to us. She also had another mild/minor seizure this morning. It only lasted 10 seconds and again was subclinical which means we did not see any outward signs of the seizure. It was only recorded on the EEG machine. She is taking antiseizure medication and still working on the dosage. The doctors are not concerned about the minor seizures...they may not mean much of anything.

I am very skeptical about the results of the EEG. It seems to me that she is responding better than she was previously, so how can the EEG say things are worse? She is actually responding some now, whereas the first day or two she was completely unresponsive. She is able to keep her eyes in the middle instead of the sliding off the side or up into her head. She is localizing pain and touch and responding to it, so I just can't understand how the EEG is say she is getting worse.

In fact, today the nurse, Julie, removed Kyara's foley (a urinary catheter) and was putting a diaper on her. She and Gunars bent her knees up and they asked her to raise her bottom so that Julie could slide the diaper underneath her. Holy cow, she DID IT! Granted it was not very far, only high enough to slide the diaper under her, but she responded!

Later Dan, the Physical Therapist that we worked with in the fall (remember the tricycle?!), came in to start rehab with Kyara. We are concerned about her muscle tone and muscle contractions so Dan is back! As much as I would love to never have seen him again, it was great to see him. Bittersweet. Dan really helped both Gunars and I feel a bit more at ease with Kyara condition. He explained that most of the improvement Kyara will make will happen in the first 3 months. Not the first 3 days. We have to be patient and keep working with Kyara. He was open and honest about the fact that he has seen patients that do not improve, but that he has also seen many patients that do improve. Time will tell what Kyara's course will be. Dan did suggest looking into rehab facilites back in Atlanta so that when Kyara is medically able, we can take her home and have the BEST treatment available. If anyone knows where the best place in Atlanta is, please let us know. We will be doing research on it, any suggestions can help us explore the possibilities.

Tonight before I left, Kyara was pretty stiff. I was playing with her hands and trying to get her to open them up more. She was moving her left leg a little. Then she stopped. I reached over and touched her left knee and asked her to bend it. She did. Ok, probable coincidence. After waiting for a minute or two I asked her to move it again...she did. Still, coincidence. Let's try this, I put my hand on Kyara right knee and asked her to move it...SHE DID! She did this for the next 10-15 minutes. I know what I saw and how much I want it to be purposeful movement and responding to commands, but I still have to hold a little excitement inside. I can assure you of this, I laid my head over her and Thanked God. I believe this was a sign and I pray that I am right and not just wishful thinking. We have had such a rough road, and everytime we feel something is going right, it has bumps, so I have to be cautious. But, I just feel in my heart and soul that Kyara was communicating with us. We will see if she reacts the same tomorrow. I pray to God and Heaven Above that she will. Small steps keep us focused on the big recovery.

Good night, precious girl. We love you so much!

Day 4...

Today has been a long day for me. I spent the night last night with Kyara and did not get much sleep. I think my eyes finally closed at 6:00 am and I woke at 7:30 for rounds. Kyara was more active last night with her movements and I was so afraid she would pull out her breathing tube. She also had increased stiffening which was concerning to me, so I felt uncomfortable going to sleep. I pulled a rolling chair up to the bedside and sang to her and told her stories most of the night. I remember most of the words to The Cat in the Hat, but not all :) Hopefully she was correcting me!

When neurology came in this morning, Kyara was still very stiff. She just seemed like she was not relaxing at all, or when she was relaxed, it would not last long. We asked and kind of pushed the idea that perhaps she has some discomfort due to the breathing tube, the chest compressions, and the chest tubes. Most people who have a breathing tube are on sedation medication to stop them from "fighting the tube". The neurologist agreed that she should be on something and that they can turn it off in the morning so that it will not interfere with their exams. So, we started her on a versed drip and that has really seemed to relax her.

This afternoon my mom stayed with Kyara while Gunars and I took Skylar and Kassey swimming. I felt extremely guilty for going without Kyara and I was thinking about her the whole time we were gone. This did not make me a very fun playmate.

Through this ordeal Gunars and my mom have been the rocks that I have been clinging to. Many of you have mentioned how strong I am in the posts, and that credit should not be placed on me. I am actually having a very difficult time. I went down to the pysch area tonight to talk with someone and they gave me some sleeping pills. I know that as Kyara gets better, I will, too, but I have to be there for our other girls, as well. I have not been the best support for Kyara either. I am trying to be positive, have faith that she will heal, and look for the improvements, but I am also terrified of setting myself up for a fall. As Gunars reminds me, there is nothing we have been told that is an absolute sign that she can not heal. We have to keep praying and waiting. I feel so helpless and guilty for her being in this position, though.

So, tonight I am going to take a sleep aid, curl up in the bed beside Skylar and dream of a happy time and place when Kyara is at home with us, laughing and playing.

Update to last blog

I mentioned in the last blog that Kyara had boots on to help stop her from plantar-flexing (like pressing a gas pedal). I said she would wear them 24/7, but that is not right. She is actually going to wear them 4 hours on, 4 hours off. She will also be getting gloves for her hands to stop her fingers from contracting. They should be getting these for her tomorrow.

Also, the question has been raised as to whether or not Kyara is still sedated with any medications. The answer is no. She does not have any sedation medications. She is in this coma-like state because of the injury to her brain, not because the doctors are medicating her.

I pray that tomorrow will have more positive baby steps and that Kyara is on her way to recovery.

Baby Steps

Yesterday at 4:00 Kyara had a mild seizure. The neurologist said it lasted for about 30 seconds and was in her frontal lobe. Kyara's level of the seizure medication was on the low end of therapeutic, so the doctors gave her another loading (big) dose and adjusted the amount she will get as a maintenance drug. Gunars and I didn't even know she had had a seizure. I didn't notice anything different from the movements she had been doing (stiffening of the body, clonus, etc that they had previously told us was not a seizure). The neurologist has decided to keep the EEG going for a couple more days to monitor Kyara's progress and check for anymore seizures (this is why she has a bandage wrapped around her head).

After the seizure, we did notice that Kyara was stiffening or posturing much more than she had the previous day. Before she would stiffen for a couple of minutes, then relax, but last night she was stiff much more of the time. Gunars went back to the Ronald McDonald House to eat dinner and see the girls, and I stayed at the hospital with Kyara. I think that was the hardest hour and half I have had since being told she had arrested on the table. I tried talking to her, rubbing her arms and legs, singing to her, leaving her alone (to decrease stimulation), praying for her, everything I could think of, but she would only relax for a minute then stiffen right back up. Her blood pressure, heart rate, and temperature would rise with each "episode". By the time Gunars got back, I was at my breaking point. I had not slept the night before and I think I was just emotionally and physically exhausted. As soon as I saw him, I burst into tears and became a total basketcase. The nurse, Julie, gave Kyara some Ativan to try to comfort her. I left and went back to the Ronald McDonald House (RMH) to see the girls and sleep for the night. Gunars texted me later to say that Kyara was much more relaxed and was not stiffening and posturing much at all anymore. I went to sleep holding Skylar like a teddy bear and praying for God to hold Kyara in His hands, help her heal, and for the God to take care of Gunars, my mom, and Skylar and Kassey while we are up here.

This morning, I came into the hospital to find some improvements. Kyara has not stiffened or postured like she did yesterday at all today. She is responding more appropriately to touch. I think she is hearing and recognizing what we are saying some. Today Julie, our nurse, told Kyara she was going to suction her and Kyara brought her hands up in defense. This was BEFORE Julie touched her, so she understood what Julie said and did not want her to do it.

Kyara has also been fitted with some boots to stop her feet from dropping. She has muscle contration that cause her to "point" her toes, so these boots keep her feet in a "flat" position. She will wear them 24/7 for now.

Neurology also came by and were impressed by her improvements from yesterday. They remind us, however, that we are still in that 3-6 day post-arrest period where Kyara can get worse. We are cautiously optomistic by her improvements, but we must keep in the back of our heads that she still has a long way to go and there could still be set backs.

In other news, Kassey is standing some on her own and only using one finger to hold onto when she walks, so walking on her own is on its way! Freedom for her, scary for me (and Bunny, my mom who is taking care of the girls up here)! Skylar has met with the hospital teacher and will "go to school" while she is here. She has already made friends with the kids in the room next to us at RMH, but they are going home tomorrow. Skylar, once again, has been so strong, but I worry about her. This is alot for a 6 year old to handle. We are providing her with lots of love and support to help her.

Thank you again for all of the emails, comments, PRAYERS, well wishes, positive thoughts, etc. I truly believe they are helping Kyara and they are a source of comfort to us. I am amazed by number of people that have brought Kyara and our family into their heart and are lifting us up. We are so very blessed.

Day 2 After My Happy Bubble Burst

The neurologist came in to see Kyara again today. She responded better to painful stimuli and her reflexes were intact. This is a positive change from yesterday when Kyara was evaluated. Kyara is still in a coma-like state. Appparently the medical field doesn't use the word "coma" anymore. She is still not opening her eyes when we call her name or obey to obey any commands (like squeeze my hand, open your eyes, etc). The neurologist said that patients can get worse from days 3-6 before getting better. Most of the patients that get worse (days 3 - 6) usually don't get better (days 1 -3 ), so hopefully Kyara will not slip back any. We only want to take steps forward! The neurologist is not giving us any predictions on Kyara's healing time or state she will be in. We still have a very long road ahead. We pray for complete recovery!

I miss my Kyara so much. Many people have asked how I am doing, and to be honest, I am a complete basketcase, I'm scared and worried about Kyara's brain function. No one can give me the answers I want to hear and I am begging to hear someone say...She is going to be fine. I trust in the Lord and the plan he has for her. I pray that his plan is the same as mine!

The comments have been so uplifting. Thank you all for the continued prayers and positive thoughts. Please keep them up as Kyara needs all the help she can get.

MRI and EEG Results

Kyara had a MRI done this afternoon. The doctors found evidence that she had ischemia (injury) to parts of her brain due to the lack of oxygen during her cardiac arrest yesterday. She also had a mild seizure while having the MRI test done. The doctors decided to hook her up on an EEG for 24 hours to watch what is happening. She has had 2 more mild seizures tonight. The doctors have put her on seizure medications, but it takes time for it to work. The seizures she is having are not like those you imagine with her thrashing around everywhere. Actually, what happens is that her eyes roll back and to the side, her legs stiffen and look like they are tapping on a gas pedal and she looks like she is coughing. Her previous EEG results from this morning had normal brain waves, but they were sluggish. The doctors believe the medications may be the reason the results are sluggish. The doctors said this is not good or bad news. It is a baseline of information. The true test will be how Kyara responds over the next couple of days and weeks.

After the MRI, the doctors decided to put Kyara on an EEG for 24 hours to monitor her brain activity and watch for seizure activity. She had a couple of "seizures" tonight, but the neurologists said they are not actually seizures. There is not any brain activity that shows seizure activity. He believes it is muscular contractions called clonus. We are still waiting to hear more information about this.

Update: Tonight while the nurse was suctioning her nose (she had a TON of boogers!), Kyara reached up like she was trying to stop him. It seems the noxious stimuli bothered her enough to get her moving some.

We are so thankful for all of the support you are providing for us. I have read every one of the posts and comments and I bawl with each one. I am not bawling out of sadness, but out of love and thanks for the love and prayers that you are blessing Kyara and the rest of our family with. We are still in need of some major prayers. Kyara is still in a coma.

Waiting Game

Here is some background about what happened yesterday as we understand it. Kyara went in for an out-patient dilatation. She had no problems going to sleep and was in a great mood yesterday morning. The doctors put a guide wire into what they thought was her stomach under x-ray. They were then planning to use the scope to visualize her stomach. When they use the scope they have to push air in front of it to "push" the tissue away from the camera so that they can see. Instead of being in the stomach, they were in the mediastinal space which houses the heart, lungs, and veins that bring blood back to the heart. Veins are very flimsy, not like arteries, which are muscular, so when they pushed the air for the scope, it collapsed the veins and did not allow blood to enter the heart. This caused Kyara to go into cardiac arrest. The doctors were right there and worked very hard on Kyara for close to 45 minutes. Thank God, they were able to save her life. Gunars and Skylar arrived yesterday afternoon. We are atleast all together.

The biggest concern right now is Kyara's brain. She was with low oxygen (60%) for about 45 minutes yesterday. That is not good for a child. She was on the operating table in a room full of Doctors and within seconds everybody was working on her. The big question mark is how did this affect her brain. She had a lot of medication that could mask any problems and/or cause the body to act in a strange way. Right now she is unresponsive in a coma-like state. No one knows how she will react and whether the medications they gave yesterday are still causing this coma appearance or whether it is due to brain injury. She is not responding to pain; she has broken ribs from the CPR and even when the doctors are pressing on them, Kyara is not responding.

The doctors did an EEG on Kyara's brain earlier, but we won't have results until later today. She is also getting an MRI done at 5:00 today. The doctors said that these test may not tell us anything, but will be a baseline for follow-up studies.

We have a lot of questions and there are alot of unknowns, but we are told that we have to wait it out. I am very sad, frustrated, thankful (that she is still with us), and angry. I want to know why things like this happen to Kyara. She is a strong girl, but enough is enough!

Thank you for continuing to pray for Kyara's recovery. Kyara needs all the help she can get. We will post more when we know more.

PLEASE SEND PRAYERS!!

Kyara is fighting right now. Dr. Coran could not find the stomach. The pouch is very large. He is doing surgery at this moment to see what is happening. Apparently they lost her heart rate at one point, although the EKG was still showing a heart beat.

UPDATE : She is stable now. Kyara was turning blue and Dr. Coran decided to stop the surgery. Her body can't take all of this. They will keep her in ICU, let her recover and decide how to proceed in a few days. She has a lot of tubes and will be fed intraveneously. I believe she will need surgery to repair the pouch that has formed.

Please pray for my baby.

It's cold uphere!

The temperature is 9 degF and dropping right now. We are in Ann Arbor now. Started driving at 5:30 am to avoid Atlanta traffic. We arrived at 5:30 pm. Kyara and Kassey did so great on the road, no crying, no fussing. Kassey did throw up once. It seems to be running in the family with Gunars being sick. My mom is with me to help.

Kyara is in a good mood. She actually has eaten more lately than her usual (since coming back to Georgia in December). Interesting what Dr. Coran will say tomorrow. Kyara's procedure is at 7:45am. It should take about an hour for the scoping. Then about a 2 hour recovery time. I will post more info tomorrow afternoon. Hopefully it will be good news.

Headed Back to Michigan...

We have had a setback in Kyara's recovery. We did a swallow study on Wednesday so that Dr. Meyers could prepare for Kyara's dilation on Friday. He wanted to see her anatomy and have a feel for what he would be looking at when he went in. Well, the swallow study looked odd. It looked to me like there was a leak again. The fluid would go down her throat then it took two paths. Most went into the stomach, but a little went out a different way. Of course, I flipped out! It turned out to be an out pouching of the esophagus where the leak used to be. It is contained and fluid comes back out of it and goes into the stomach where it is supposed to go. We waited most of the afternoon at the hospital while images were sent to Michigan for Dr. Coran to see and for he and Dr. Meyers to discuss the best course of action. They decided Dr. Meyers would procede with the dilatation on Friday as planned and since she does not have any symptoms of infection.

So, today Dr. Meyers dilated her. Unfortunately there was some complications with the procedure and Dr. Meyers was unable to dilated the pseudoesophagus. Because of these complications, the best thing for Kyara is for us to go back up to Michigan and have Dr. Coran dilate her.

I am devasted to have to go back. But I just want the best for Kyara. I am frustrated that things are not going smoother. I would like to know why Kyara seems to develop all of the complications that are so unlikely to happen. Dr. Coran said that the leak she had developed at the beginning was like a 1% chance of happening. This out-pouching has only occurred to 2 other of Dr. Coran's patients. WHY Kyara? She has been through enough!!

Now, I have to take a deep breath and remind myself that this is not so bad. She is healthy, she is not showing signs of infection, and she WILL be ok. The plan is to go up on Tuesday, have the dilatation on Wednesday, hang out on Thursday, and come home Friday. I hope it all goes according to plan...

Back to Life, Back to Reality...

This week Kyara and Skylar went back to school. Back to routine, back to getting up early, and back to friends. This was a great relief for all of us, I think. Kyara was ready to get back to school to see friends and her teachers! Skylar is a social butterfly and is as happy as a lark at school. I was ready for a routine. It is still in the process of being worked out, but I hope Kassey will get back on a regular nap schedule and that I can finally clean my house :)

Kyara has been able to swallow foods fine this week, our main concern is the amount of her intake and her weight loss. She has lost 5 pounds since we have been home, this is 1/8 of her body weight, and too much for her to have lost in 3 weeks. She has simply not been interested in eating. I have gotten a bit... no, a LOT frustrated with this issue. I feel like I am watching her melt away and I can't convince her to eat. We have been super sweet, begged, been mean, tried to reason with her, etc. but she was not interested. And when we say she is not eating, I mean she will eat 2 nibbles of donut and say she is done. She chews up food then spits it out. I am not sure what to make of it all, but help is on the way...

Tonight Kyara ATE dinner. She ate a whole helping of mac-n-cheese and 9 (yes, we counted) fried ocra. This is HUGE!!!! I am so happy to have her eat some. Today I also got her to drink some of her high energy drink. Kassey is sick and taking medicine, so I told Kyara that she had medicine, too. I pulled some of her drink into a large syringe and told her it was medicine that she had to take. At first she resisted, but I insisted and said it was not an option, and IT WORKED! I hope tomorrow it will work again :)

On Tuesday of next week we are planning on doing a swallow study to determine if her suture line has strictured down again. This might explain why she has not wanted to eat. If it is strictured, we will do a scope and dilation on Friday. I am ok with it either way. Our GI doctor (Dr. Meyers) in Atlanta will be able to do both things, so it is not a case where we would have to go back to Michigan, thank goodness. I just want Kyara to be healthy and happy, so whatever we need to do, we will.

HAPPY NEW YEAR!!

Here's to a healthy, happy, productive 2009!

Kyara is doing fairly well. We are still struggling with eating. For the past week we have been pushing milk, cheese, fruits, potatoes, etc on Kyara. After each meal she has been complaining about cramping and major "intestines ache". We figured she was eating too much at each meal and thought it was something we would have to watch. She was not eating much, but I don't know what the capacity of her stomach is anymore, so who know what too much is?! Kyara is supposed to be eating 5-6 small meals throughout the day, but after eating one meal she would complain for the rest of the day and not want to eat anymore. This has been a source of frustration for me. Kyara can sometimes be on the "dramatic side", so it was difficult to tell whether she was seriously hurting, or using this as an excuse not to have to eat or drink the high calorie drinks. We have also noticed that Kyara doesn't not have interest in many of the foods that were once a treat for her. For example, she no longer wants ice cream or chocolate... is she still related to me??? :)

On Wednesday, January 31 we ate lunch with Dr. Meyers and Nurse Kim (Kyara's GI doctor and nurse in Atlanta). This gave Dr. Meyers an chance to see Kyara eat. About 15-20 minutes into the meal she started making faces like she was in pain and began to cry about her stomach hurting. Dr. Meyers observed all of this and asked lots of questions about how long this had been going on and what was in her diet. After a lengthy discussion, Dr. Meyers feels Kyara may have "dumping syndrome." Basically this means that food is leaving her stomach to quickly and drawing in water from her body which makes her feel very crampy and nauseated. We are adjusting her diet to help with this problem. She is now on a low carb, high fat and protein diet. This diet is very similar to the Atkins diet. We are going to try it until Monday, then call Dr. Meyers with results - see if the cramping stops. Dumping Syndrome is most likely the cause for her pain (which I now feel guilty for thinking that she was being dramatic). There are other things that could be going on, too. But we will explore those problems if the diet doesn't help.