Kyara Dzenis

Kyara Dzenis

Sunday, November 30, 2008

24 Hours with No Breathing Tube


Kyara has done well today without her breathing tube. Her oxygen levels have stayed high and we are optimistic that she will not need the supplemental oxygen via a nasal cannula much longer. The poor girl, she has two tubes in her nose already, then they put a nasal cannula in there, too! On Wednesday the doctors are going to do another swallow study to see how the leak is healing. If the leak is closed, they will take out the gastric drain. If it is not close, they will wait a few days or a week and study it again. Tonight her face is very flush and she has developed a rash on her legs and arms. We are not sure what this is from, but the doctors are not worried by it. It does not seem to bother her any, I don't like it. I am sure it will go away on its own. She has been able to talk some, but for those of you who know Kyara, I can tell you, she is not talking at her normal rate :) Her voice is very soft and raspy from the breathing tube. It will go back to normal, but it will take some time. Today she got out of bed a couple of times (with assistance) and sat in a chair. This is big news and a huge step forward. Over the next week she will be getting stronger and stronger and she will be running the halls as she gets better!


Gunars and Skylar left this morning at 9:30 am. It is normally a 11-12 hour drive. Well, I talked to them at 8:30 pm and they were only in Knoxville. This is a good 4 hours from home. I guess driving home on the Sunday after Thanksgiving wasn't such a great idea. It is raining and the roads are PACKED! I am praying that they have a safe trip.


Saturday, November 29, 2008

The Breathing Tube is Out!!

So far so good. We are watching the UF play FSU. GO GATORS!!!

Remove Those Tubes!!

Yesterday afternoon and last night Kyara kept coughing and gagging after the doctors pulled her mediastinal tube out some. After taking an x-ray and determining that the tube was now in the back of her throat and not in the leak, the doctors decided to pull it out completely. This morning, the doctors planned to move the gastric drain tube that was in her mouth to her nose. That will allow the breathing tube to come out. She can't have the gastric drain tube in her mouth and get the breathing tube out because it will irritate her gag reflex. She is also not ready to go without the gastric drain tube, so it had to be moved to her nose. We went down to radiology to have this procedure done, but the doctor could not get the tube to go into her stomach. Her leak is in the back of her esophagus by her spine, so when the doctors try to put the tube in, gravity makes it skim down the back of the throat and into the leak. After trying to get the tube to go into the stomach for 45 minutes, the doctors decided to take her to the operating room so that they could use a scope to visualize where they are putting the tube. She is back in the room now and the procedure was successful! So, to sum up what has been done: She now has two tubes going into her stomach, one goes through her stomach and into her intestines for feeding, the other goes into her stomach to drain out secretions. The doctors tried to put a small tube through her nose and into the leak as a second thought, but the two tubes that are already there are forcing the leak closed and the doctors can't get a tube through. This is good news, because we are hopeful that the leak will closer quicker now.

Now we need for her to wake up, do a "sprint" exercise on the breathing machine where she will breath by herself without the help of the ventilator, and do a blood gas to make sure she is getting enough oxygen and they will take out the breathing tube! Depending on how long she sleeps before we do the sprint and depending on how she does with the sprint will determine whether they take out the breathing tube today or tomorrow. Go, Kyara, Go!

Gunars and Skylar are leaving tomorrow. This makes me so sad! I am really going to miss them. I pray they have a safe trip home. I have really enjoyed having them here this week! Skylar has been great. She lost a tooth last night and smiled through the bloody mess! What a trooper! Gunars has spent most of his time at the hospital, but tonight we are planning on taking Skylar and Kassey to see some Christmas lights close to Detroit. I wish Kyara could come with us. Perhaps we will get home in time to see the Gaddy's Christmas lights, though. This has been a tradition for us since the girls were born. We love us some Gaddy's! Once Gunars and Skylar leave, Mom and I will go back to "passing the baton."

Friday, November 28, 2008

For the Safety of the Children...


This is the sign in the bathroom that we share with another family. Skylar has learned so much in first grade, that she was able to read the sign to me the other night. After finishing the last sentence, she looked up at me with a straight face and asked me "Why would they?" HUH? "Why would they leave their children under the sink. It would not be safe." Then I read the sign again. She's right! It would not be safe to leave your children under the sink!
Update on Kyara: She is doing great! She has not had a fever in a couple of days now. They are continuing to back the drain tube out of her mediastinum. Once it is out, they can take out her breathing tube. The doctors are still planning on this happening around Sunday. Kyara is getting some personality and strength back. She is certainly letting the nurses know when she is not happy. Her feet are telling all kinds of stuff! She kicks and points with her toes. We are very excited to see her care about what is happening around her and TO her!




Thursday, November 27, 2008

HAPPY THANKSGIVING


We are so thankful for our friends and family. You have given us so much support and love, we are a very lucky family. We are thankful for the prayers you have sent on behalf of Kyara. I truly believe that each of you have played an important part in Kyara's recovery! We have been decorating Kyara's room with the wonderful cards and artwork that she has been receiving! This picture shows the second wave of cards we have put up. We took the old ones down. We are thankful for our good health and for the health of our friends and family. For those of you who are battling different health issues such as breast cancer, colds, and boils on your butt (these are all illnesses that either a family member or friend is dealing with), we pray that you will recover quickly. I am so happy to have my girls, Gunars, and my mom here for the holiday. I wish we were back home eating some yummy deep fried turkey, but we will be there soon enough. Please be safe during this holiday season!


Kyara is healing like she should and making progress. Kyara had her back drain tube removed and the mediastinal tube pulled back some today. The doctors are predicting having the mediastinal tube removed by the end of the weekend. She also had NO FEVER last night. This is HUGE! I have a guarded excitement about these updates. Kyara appears to be on her way to recovery, but I must prepare myself for any set backs. The doctors said that we will still have to work on getting her strength back, weaning her off medications, and learning to eat again. Not that she has forgotten how to eat, but the anatomy is different. We will see how it goes. I understand it will be a long process but overall it is all looking good.

Wednesday, November 26, 2008

The Results Are In...

Today Kyara had a CT scan and another "swallow study" done to check the leaks and the pus pockets for healing. It was a good day at Mott's, because Kyara is finally on the mend. The doctors said that the pus pockets are much smaller and the leak is shrinking in size as well. Kyara has a drain from her nose (or mouth, right now I can't remember which hole which tube is is in:)!) to her mediastinum that was draining the pus pockets. The doctors are planning to slowly start pulling this tube out. If things go well, the tube will be out on Sunday and they will be able to take her breathing tube out then, too. The doctors are also planning to remove a drain that is in her back tomorrow. So, tubes are coming out! Yeah!!! Kyara is still spiking fevers and the doctors think it could be an infection from her PICC line. This is like an IV that has a long catheter that goes through her vein to her heart (or close to it). The doctors are discussing taking the PICC line out, and I am guessing they will replace it somewhere else.

All in all, it is a good day. Kyara still has a long road ahead of her, but we are going in the right direction. Thank you for all of your love, support, prayers, well wishes, care packages, etc. We are so lucky and blessed to have you in our lives.

Walking in the Snow



Yesterday it snowed a pretty good amount in the morning. Before going to the hospital to see Kyara, Skylar and I had some needed one-on-one time. We went for a walk in the Arboretum that is right next to the Ronald McDonald House. There was trails all through the park and a main "road" around the inside perimeter of the park. I believe it is about a mile to a mile and a half around, but we took some of the trails through the park as well. Half way through the walk, we ran across an information post and got to see a map. This helped greatly because I was beginning to think we were just walking in cirlces. After a while, the trees start to look the same :) Skylar and I had a great time. We built a small snowman, threw snowballs at each other and we took a kickball with us and knocked the ball around some. I loved spending the time with her. Through this whole process, Skylar has been so tough and understanding, but she needs some attention placed on her, too. When we were walking back to the House, she told me that she had a great time and reached over to hold my hand. Gosh- I loved that! Spending this quality time with my kids is so precious to me. I have taken it for granted in the past, and I am realizing that these moments are important, not only to the girls, but for me, too. There is a quote on the wall of the PICU, "We do not remember days, we remember moments." I have walked by this quote everyday since Nov. 2 and its message recently hit me. I don't recall which day Kyara started to wake up, but I do recall her nodding her head when I said "I love you." I remember the giddiness that Skylar (and I) had when we went to Six Flags this summer. Kassey is starting to blow kisses, but I am not sure which day this started on. My point is, I am enjoying the moments and they will be with me forever!

Tuesday, November 25, 2008

Fever and Sleeping

Today has been slow. Kyara has been fighting a fever all day. The doctors are not sure why the fever has come back. They are doing cultures on everything again. Kyara slept most of the day today. She started to wake up about the same time I was leaving. Gunars is spending the night with her tonight. Tomorrow she is having another test done to see how she is healing. Keep your fingers crossed!

Monday, November 24, 2008

Ronald McDonald Room Changed to 11

We have changed rooms at the Ronald McDonald House. We are now in room 11. This room is a bit bigger and is great with Gunars and Skylar here.

Today Kyara had a contrast study done. The doctors are watching the contrast over the next 12-24 hours to see what is happening with her pus pockets. They are trying to determine if the back chest tube is still needed. If it is not in communication with the pus pockets anymore, they will consider removing it. We found out that they will probably keep her breathing tube in until the leak seals. This may be a few weeks. They are telling us that her treatment is very dynamic and changing daily/hourly. We just have to go with the flow as the experts figure the best course of action. They are confident that Kyara's issues will be resolved, it's just a matter of time and determining how to best accelerate the recovery. The doctors told me that there are some kids that are having multiple system failures and they don't know if they will recover. This is NOT the case with Kyara. They are confident that she will heal, we just have to be patient.

Have I mentioned the fact that I am working on my patience?

Gunars and I decided to take Skylar and Kassey to the UM Rec pool for some fun yesterday. It was quite humerous. We put on our swimsuits, then put on all of our clothes, jackets, hats, gloves, scarfs, and boots. We walked the 300 yds to the rec center, got inside and found the locker rooms to get to the pool. Gunars went to the boys' locker room and Skylar, Kassey and I went to the girls'. We stripped down to our swimming suits, took showers (required before going in the pool) and climbed the stairs totally excited to finally get to the pool. Wouldn't you know it... it was a lap pool and all of the lanes were filled with college students and grown-ups swimming! This is not what we came over here for!! There was a huge sign that said "lap swimming only." I took one look at Kassey and figured she was not going to be doing any laps! So, Gunars and I talked it over, and he decided to get in with Skylar. One of the lanes opened up and in they went. You would think that an indoor pool would be nice and comfortable temperature wise. Especially in Michigan... but no such luck! Guess they didn't want the true swimmers to get hot in the pool. Anyway, Gun and Skylar swam a couple of laps then it was time to go. Back to the locker rooms to change clothes, put on jackets, hats, gloves, scarves, and boots and back the Ronald McDonald House we went. It was quite an adventure. I think next time we will try the Y.

Sunday, November 23, 2008

Time for a New Picture


Kyara is getting stronger and stronger by the hour. We are very hopeful that she has turned the corner. We played Candyland this morning and she is really loving her Lightning McQueen pillow and the Cinderella spinner. Kyara is getting back to her old self. We are so encouraged by the progress she is making.

Saturday, November 22, 2008

No News is Good News

Today my dad left. I hope he has a safe trip home and I look forward to hearing that he made it ok. It was nice having him here, and I wish he had decided to stay longer, but I understand the desire to get back home. Gunars and Skylar arrived today, so it was a changing of the guards. They made it in time to watch Florida run all over Citadel. You can't stop the Gators, right ZiZi?

Kyara is doing well. She was very alert , playing, and laughing (although you can't hear the sound, you can tell she is laughing) this morning and early afternoon. Around 3:00 pm she hit the wall and has been taking a wonderful nap. I am sure she will wake up soon and be ready to go. We have been decorating her walls at the hospital with all the cards she has gotten. They have been great and put a smile on all of our faces.

Today we also watched the DVD from Willis Road. Thank you so much, Ms. Michelle, for making that for us. Kyara had a HUGE grin on her face when she saw her classmates. She loved the song and looks forward to coming to EVERYONE's house. :) Ms. Carlisle, we need to know what size shoes you wear so we can get you a pair! Ms. Laurie and Ms. Misty, thank you for your messages. I tried hard not to cry, but I was overwhelmed by the love and support you sent. Skylar's Thanksgiving presentation was so cute! "Mercy me!" Ms. Thompson did a great job getting all of the students to do their parts like professional actors! We can't wait for Kyara to get healthy enough to get home and give everyone big hugs!

Friday, November 21, 2008

What a Difference...

Kyara has continued to make improvements. Her heart rate is much closer to normal and she has been awake most of the morning and early afternoon. We have laughed and played. She has had her fingernails painted and hair braided. We have watched Cars at least 5 times and I am finding new things to laugh at each time :)

There hasn't been much big news today. Well, I take that back. Improvement is always big news. As for plans for Kyara's recovery...we are in a "watch and see" course. They will leave her breathing tube in until next week, we think they will pull out the chest drain on Monday, and we will check the leak in 1-2 weeks. Kyara is having difficulty with pooping. Her poor tummy is distended and the docs have tried an enema and suppositories to get her to "release the goods." So far, no good. I think she is having difficulty pooping in bed. We can't get her up to the potty with the breathing tube, and she is wearing "hospital pants" so she can relieve herself, put I can only imagine that has to be difficult for her.

My dad has been here since Wednesday and I must admit it has been great to have him here to help. Kyara has loved seeing her Pop here. My mom has been staying with Kassey, and Dad and I have been flip-flopping at the hospital. This way we don't have to take Kassey out in the freezing weather each time we switch. Gunars and Skylar are on their way up here. They left Sharpsburg at 2:45 and will drive until Gun is tired. Then they will drive the rest of the way tomorrow. It will be great to have them here for the Thanksgiving week!

Thursday, November 20, 2008

A New Day...

I have regrouped. Thank you so much for the inspiring comments on the last post. I was a bit frazzled and I have since taken a deep breath and looked for the bright side of things.

Kyara has been more at ease since last night. Her heart rate is as low as it has been since the surgery (in the 120-130s) and she did not spike a temperature last night! She appears much more comfortable and she is not working as hard to breathe, but she has a TON of tubes now. Two in her nose and 3 in her mouth. All are doing different jobs and are needed, but, my goodness, it is a lot of tubes. The doctors have been doing cultures on Kyara and found she has some kind of fungus growing. They are consulting with the disease specialists and figuring out the right medications to combat the fungus.

One hiccup that occurred since last night has been a feeding issue. The doctors put in a feeding tube through her stomach and into her intestines (They want the stomach to rest and they are draining the stomach so that juices don't spill out into the esophageal leak.) Well, the nurse last night attached to feedings to the wrong tube and put it directly into her stomach. This is NOT a good thing. When I realized what was happening and informed them that the feeds were going through the wrong tube, she switched it immediately. But now, the drain the is in her stomach is still draining feeds even though they are supposed to be in the intestine. The doctors are going to do an xray to see if the original feeding tube (in the intestines) has moved up into the stomach. They will have to fix this tube if this is the case.

Wednesday, November 19, 2008

Oh, come on...


When are we going to get some good news? I am really getting frustrated and I just want my baby healed! I do not like this feeling of helplessness. As a mother, I feel it is my responsibility to protect my children. And now, I have let Kyara down twice. First when she drank the chemical, and now with this surgery. Kyara, I am so sorry!


Obviously, things are not going very smooth. When the doctors scoped Kyara, they found an open esophagus (good), and a very pink stomach (again good), but a HUGE leak. The leak is almost 1/2 the size of the esophagus. The doctor put a tube from her mouth, through the leak, into her chest cavity to drain the fluid that has been escaping. He also put a tube from her nose into her stomach to drain her stomach of fluids. She will stay intubated (breathing tube) for about a week. The doctors are planning on leaving the tube that is draining the chest cavity though the leak until it heals. We will stay in the hospital until it heals. They are guessing that the leak will close in 4-6 weeks. So, we will definitely be here for Thanksgiving, probably for Christmas, and I hope we will be home before the New Year. Once the leak is sealed, I am told that she will do great. It is just a waiting game and managing problems as they arise. I am having a hard time being patient.

Bump!

Kyara is scheduled to go down for her scope sometime this afternoon. They have "called" for her, so it should be within the hour. About 2 hours ago, Kyara started having difficulty breathing. The nurse gave her oxygen and a breathing treatment. Although her oxygen levels came back up, she was really having to work to breath. She was also not as responsive as she has been. The nurse paged the doctors and they came straight up to her room. They were not happy with the way she looked and decided to intubate (put the breathing tube back in) again. She would have been intubated in the operating room anyway, but they wanted to go ahead and secure her airway now, before anything gets any worse. It was not an emergency, but it was urgent. The doctors will replace the NG tube (if they can) and possibly do a light dilation on her esophagus at the suture line because it appears it has strictured down. Luckily, I am reassured that this kind of strictures respond well with dilation, unlike the strictures she had from the chemical ingestion. Tomorrow the radiologist will try to put in some drains in her back to remove the new pockets of fluid that have develop in her chest cavity.

So, right now I am waiting... all day I have been waiting...waiting to hear some good news.

Tuesday, November 18, 2008

Another Hiccup

Today has been a day of tests. Kyara had another swallow test this morning because the doctors were not happy with how little they could see yesterday. Well, the test this morning did not go so well. They were not able to get a tube into her stomach (which they needed). They also decided that the NG tube that they thought was in the stomach yesterday, was actually not placed in the stomach. After attempting to place the tube for 45 minutes, the radiologist felt uncomfortable continuing (Kyara as vomiting each time they tried) and stopped the procedure. So now what? This afternoon, after meeting and discussing Kyara's case, the doctors decided to do a CT scan. This is for preparation to do a scope of her "esophagus" tomorrow. The doctors want to visualize her esophageal leak and her stomach. Kyara is also having a problem with spiking high fevers at night. She is hitting 104F, and her heart rate is skyrocketing. This is concerning to the docs because they are not sure why she getting these fevers. Also, the pocket of fluid that they have been draining may have moved to a new space. If this is the case, the doctors will have to put in a new drain to get rid of this fluid. I assume they will be able to see this on the CT scan they did today.

Yes, today has been a day of tests, and not just for Kyara. I am getting tested emotionally as well. Just when we feel like things are getting so much better, we are running into some potentially big complications. Why can't things go smoother? All I can do is sit back, trust the doctors and their skills and knowledge and pray that everything will right itself. I have been told that this is a very complicated surgery, and many kids have a hard time, but in the long run, it is extremely successful. With a 95% success rate, I have faith that Kyara will be fine once we get through these rough patches.

Monday, November 17, 2008

There is STILL a leak

We did the swallow study again today. There is still a leak, but it is smaller than it was before. Although we wish the leak was gone, this is still good news. Kyara has been battling infections, and today the doctors decided to remove her central line because they felt it was contaminated. They were able to place a Pic line instead in her left arm. She is doing well and they are SLOWLY weaning her off the medications. This will take days/weeks. The doctor told me tonight that she is still getting enough drugs to knock most adults out! Because Kyara has had sedation medications every 1-2 weeks for the last 2 years, the doctors feel she has developed a tolerance to the medications, so she has required higher doses. This just means we have to take our time weaning her off. Today she was more awake and was able to tell us when she needed to go to the bathroom and if anything hurts. That has been very helpful!

Gunars and Skylar went home today. They will drive back up on Friday and spend Thanksgiving week here with us. I am looking forward to seeing them again! My dad is coming up tomorrow to stay a few days and help us out some.

The Ronald McDonald House has been a great place to stay. It reminds me of a college dorm. Each family has their own room and we share a bathroom with another family. There is a kitchen, dining room, family rooms, and game room. There is also a playroom for younger kids. Each family has a chore of the day and groups in the community come in most nights to cook dinner for us. It has been nice. It is a like a support group because everyone there has a child with a major health problem in the hospital. One family we have gotten the pleasure of getting to know have a little girl who had open heart surgery on Wednesday last week. She is doing GREAT and was discharged today! Holy cow! I find that absolutely amazing! She was in ICU for only 1 day and then on the "floor" for 4 days. She has healed so well. It is amazing!

Sunday, November 16, 2008

More tubes out

Today the doctors removed more of Kyara's tubes. They removed her urine cath, her right chest tube, and her arterial line (an IV that was in an artery in her wrist). She is more awake than she has been and has even uttered a few precious words to us. Kyara is still heavily medicated, and believes she sees bees. She is expressing the desire to swim, too. Hopefully that will come soon! Tonight Kyara has had some difficulties with increased heart rate, blood pressure, and temperature. They have taken an xray and her lungs still look good. We are not sure why she has these increases in her vital signs, but the doctors are on top of it and keeping close watch of her.

Dr. Coran is finally back in town... but only for a few days. He came in this morning/early afternoon, and said he was happy with Kyara's progress. He was unhappy that Kyara pulled out her NG (nasogastric - goes from nose to stomach) tube last night. Dr, Coran has scheduled another swallow study for tomorrow and if the esophageal leak is still there, he will probably put a new NG tube in. IF the leak has closed, he will probably leave it out.

Gunars and I spent the afternoon together with Skylar and Kassey. Although we missed Kyara a great deal, it was nice to be together again. Most of the time, when Gunars is here, and with my mom, we are "passing the baton." We call the key to our room at the Ronald McDonald House the baton. One of us runs in, gets the key, and the other runs out back to the hospital . So it has been nice to actually spend a little time together.

On top of all this, it is SNOWING again! I have been on a hunt for boots. My socks were getting wet in my tennis shoes from walking to the hospital. It has been miserable. So tonight, I finally got some boots to keep my feet warm and dry! The snow is sticking, and it makes me nervous to drive. Tonight, on the way back to the hospital, I actually skidded some in the snow. Scary! I slowed way down and gave myself about a mile head start on stoppping at any lights :)

Saturday, November 15, 2008

Gunars and Skylar have arrived




This morning Gunars and Skylar flew in from Atlanta. They almost missed their flight due to a wreck on the interstate, but got to the gate just in time. Whew! I am so happy to have them here!

It hasn't taken Gunars long to climb into the bed with Kyara. He and Kyara are cheering on the Gators! After our first touchdown, Kyara did a Gator chomp! She must be feeling better.
Kyara's face is still swollen, but it is decreasing some. She can make a funny face to get a sliver of the right eye open. The main surgeon, Dr. Coran called in this morning and is very pleased with the progress she has made in the last few days. He will be back in town tonight or tomorrow.

Friday, November 14, 2008

Things are going well...


Kyara still can't open her eyes yet, but she is now only getting blow-by oxygen. She is showing a thumbs-up to let you know she is doing well and working on recovering!
Way to go Kyara! I love you so much! You are working so hard and you are so strong! Keep at it, Sweetheart. Love you! Mommy

Breathing Tube is Out!!!



The doctors just removed her breathing tube. She is still getting some oxygen from a face mask, but the tube is out!!! Hooray! We also have tried the TPA again today, so the doctor will be back in at 3:00 to see if it has done any good.

The doctors have also weaned her sedation medication some. They must do it very slowly so that Kyara does not go through withdrawal. They will also wean her pain medication slowly. This maybe what keeps us at the hospital the longest. The doctors are predicting that we will get home just in time for Christmas...maybe Christmas Eve. Hopefully we can get home before this, but the important thing is that Kyara is ok.

Kyara still has a lot of swelling. Last night and this morning she was able to open her right eye. After a coughing fit this afternoon, however, her eye has swollen back shut. The doctors think that by taking out the breathing tube and eliminating the postive pressure of the machine breathing for her, the swelling will start to go down. The swelling is actually air that they believe has leaked from a small hole in her trachea. The hope is that since the tube is out, the trachea will heal on its own, and the air leakage will stop. This will give the body the chance absorb the free air.

Overall, so far it has been a good day! Gunars and Skylar are coming tomorrow and I can't wait!!

Thursday, November 13, 2008

One Eye Open!

Tonight, Kyara opened one of her eyes when I was reading The Cat in the Hat to her. Her face has been and still is extremely swollen, but I was/am SO eccstatic to see a little sliver of an eyeball. Kyara has been weaned more on the breathing tube and is doing great. Tomorrow they are planning to do "sprints" to excercise her diaphragm and get her ready to remove the tube. Hooray!!

The drain in her back is having difficulty draining. The collection of fluid is so thick, it is not moving through the tube very well. The doctors put in TPA, the clot buster, so we are waiting to see if that will help.

Hope everyone is doing well, thank you for all of the thought, prayers, and positive comments on the blog. We still have a long road, but we are moving forward. Goodnight!

Finally, a pretty quite night...

So, last night was pretty quiet. My mom stayed at the hospital with Kyara and said she slept pretty well. Kyara is still very swollen in the face, but with time that will go away. She is also draining from the tube in her back. The stuff coming out is very thick, so the nurses are flushing the tube every 2 hours to keep it from clogging up. The doctors are going to add TPA (clot buster) to the tube and the area where the fluid collection is to try to liquidify the collection better. They have also decreased Kyara's respiratory settings again...one more step towards getting the breathing tube out. The doctors are planning on decreasing it again later today and start "sprints" to exercise her lungs tomorrow. Hopefully we will remove the tube later this weekend or early next week. We have to wait and see how she tolerates the sprints, but the doctors say she is improving and looking good respiratory wise. Otherwise, things are holding still and she is stable.

Kassey has begun to really crawl on her hands and knees at the RMH. She has been doing a military crawl for sometime and every now and then would get her belly up off the floor, but now she is truely crawling more often. I am sad I did not see this transition, my mom told me about it. For the most part, when I see Kassey it is to feed her or put her to sleep. Having been there for Skylar and Kyara every move, I feel sad missing out on Kassey's changes. I am beginning to understand how hard it must be for Gunars to miss the girls' first steps, and for any working parent to leave their babies for someone else to witness these milestones.

Wednesday, November 12, 2008

Another Tube...

After last night's CT scan, the doctors have decided that Kyara needs a tube placed in the area where fluid is collecting. It is in the middle of her chest, back by her back. They believe this fluid has a lot of bacteria in it and perhaps this is a reason she is staying sick. Hopefully, by draining this off, she can get back on the road to recovery. They will place a tube, much like the chest tube, through her back and directly into the space where the fluid is. The doctors will use CT scans to make sure they are placing it in exactly the right spot. They are also considering REMOVING her left chest tube. It is not draining, so they are talking about removing it while she is down there. I hope they do, as long as she is ready for it to be gone!

The swelling in her face and neck continue to get worse. Both of her eyes are now completely swollen shut and her skin is pulled tight with the pockets of air and fluid that is accumulating. Again and again the doctors say this is ugly to look at, but it poses no danger to her and will go away on its own.

Kyara's vital signs are still very stable and the rest of her body is looking good. Amazingly, the doctors are still very optimistic about her progress. They have informed me that most kids are here for 6 weeks after this surgery. So much for 10 days! I just wish they had been more up front with the timetable to begin with. But, then again, perhaps we hear what we want to hear. When Dr. Coran said 10 days if things go perfectly, I imagined that things would go perfectly. Why wouldn't they? I am not in any hurry, though, I just want Kyara to be safe, healthy, and happy.

*** Kyara just got back (5:15pm). They were able to get the tube in place and remove 80ml of slimy stuff from the area. They are sending it to the lab for cultures. We will get results in 24-48 hours. They have also removed the left chest tube, so that is good. And, they have decreased one of her pressures for her breathing tube, so that is putting us one step closer to getting it out! ***

A flurry of activity

Kyara's doing ok. The swelling has been determined to be air due to... the leak in the esophagus, pressure of the breaths they are giving her through her breathing tube, a freak thing. Who knows. The doctors have decided that the air and the swelling is in the tissue under the skin and that although it is quite disfiguring now (and it HAS gotten worse), it will reabsorb by the body in a couple of days. I am a bit freaked out by it, she just does not look like herself anymore. I am really ready for it to be reabsorbed so that she can go back to looking like my Kyara. The doctors say that it is not dangerous or harmful to her, so not to worry.

Tonight the doctors did decided they wanted ANOTHER chest xray (she gets them at least 1x a day) and a CT scan. They are concerned about the fluid that has leaked out of the suture line and into her chest cavity. It is from her fluid from her stomach and it has bacteria in it, so they are concerned with her getting sicker from it. They wanted a baseline CT scan so that IF she does get sick, they will know where she started from and so this will be one test they will not have to do at that time. To get her to the CT scan, Kyara had to be moved to a stretcher because her bed will not fit through all of the doors. There was no fewer than 7 people in her little room helping to get her prepared for the transport. It was crazy with activity!

I am being reassured that we should not take one item (temperature, heart rate, blood pressure, etc) and latch onto it as a concern. We have to look at all of her signs and symptoms and evaluate her taking everything into account. And, believe it or not, she is still doing well. As the doctor said to me, "the body will heal itself, we just have to put out the fires and let it do its work."

Rest well, Kyara. Mommy loves you!

Tuesday, November 11, 2008

What? More swelling?




I spent the night last night back at the Ronald McDonald House (RMH) and my mom stayed at the hospital with Kyara. I had a very hard time leaving her. I am feeling completely torn between staying with Kyara (who was awake and wanting me to stay with her) and Kassey (who is still nursing). I miss Skylar and Gunars, too. I had a bit of a breakdown... I guess all this stuff kinda hit me. I have regrouped and I am feeling better.


So, when I came back to the hospital this morning, I was shocked to see Kyara's face completely swollen. Her left eye was swollen shut, she had a large (HUGE) lump of swelling on the side of her head, and the swelling was increasing around her neck and into her chest on the left side. WHAT IS THIS?? It seems that the leak in the suture line from her neck is leaking air (and a little fluid) and it is going into the tissues in her neck, face, and chest. The doctors decided to put in another larger chest tube on the left side (they used the same hole and removed the smaller tube). We are hoping this will help eliminate any more swelling. The swelling that is already present will have to be reabsorbed by the body. This will take a couple (2-4) days.


I also learned that we are looking at probably 3+ more weeks here. Looks like we will be spending Thanksgiving in Ann Arbor. She is on heavy pain and sedation medications that cause withdrawal symptoms if not weaned carefully. Just the weaning can take a couple of weeks, and we don't even have the breathing tube out, yet. As for the breathing tube, they are still hoping to take it out by the end of the week.


One of the nurses during the night shift has been braiding Kyara's hair. What a sweet gesture! This time she put some ribbon in it and wrapped it up by her head. Very cute! Like a beautiful present with a bow on top!

Monday, November 10, 2008

She is awake


Kyara is awake at times, and we are trying to communicate. She still has the breathing tube in her throat, so she can't talk. Her hands are also restrained so that she will not pull out any of the tubes. This means she can't gesture very well with her hands, either. This afternoon she opened an envelope with her toes... maybe she is part monkey! (Hee, Hee!)
The doctors also placed another tube in her nose that is smaller and yellow. This one will be used for feedings. The other tube in her nose was used for draining acid. I think it will be coming out sometime soon.

There is a leak...

I just got the results back from Kyara's study, and there is a leak in the suture line from the esophagus to the stomach. This means fluid, spit, or air can leak out of the connection between the esophagus and the stomach. This should close on its own. They are keeping a close eye on her fever (it is at 101F), her heartrate, and her blood pressure for signs of infection due to the leak. So far, they said the infection she is battling is pnuemonia, not due to the leak.

A good night's rest

Finally, Kyara has had a pretty good night. She did not have the difficulties she has been having the past few nights. When the nurse would suction out her breathing tube, Kyara would struggle some, but then she went right back to sleep. The past few nights it had been very traumatic and she had a hard time settling back down, so this is a major improvement!

Today at 12:00 she will be going for a swallow study to see how the surgery went. I am excited to see the results. So far she has not leaked from the incision site, so that has been encouraging. Again, the doctors said it normally leaks between day 7 and day 9. We are at day 7 now, so keep your fingers crossed!

This weekend we had a family visit us that we have never met. They are friends of one of Gunars' bosses. Jeannie was so very sweet. She brought some beautiful flowers and opened her home to us if we need/want an escape. I am amazed by the generosity and love that is being showered on us. You know, most of what we see on the news is about how horrible people are... murders, child abductions, arson, robbery, etc. If you didn't know better, you would think that is the way most of society is. But, really, most people are warm, considerate, loving people. I wish that was focused on more.

Thank you all for your love, warmth, thoughts, and prayers. It is not lost on us.

Sunday, November 9, 2008

And then it started to SNOW!!

Since we have been in Michigan, the weather has been crazy. When we first arrived, it was in the 50s. On Monday, it was in the 70s. Today, it snowed. Are you kidding me? It honest to goodness snowed. It stuck on the ground! Back home, school would have been closed!

Kyara is much more awake tonight. She is opening her eyes for longer periods and letting us know when she is hurting. I am staying with her through the night, so we will see if tonight will be better than the past few have been.

Skylar and Gunars went home today, too. I was so sad to see them go. I can't wait for them to come back on Saturday. I know that it is important for Skylar to go to school, be with her friends, and to keep as much routine as possible, but I am greedy. I want her and Gunars to be with me.

Tonight in the parent waiting room I met a lady who has a 2 year old in the Cardiac ICU section. Her daughter has her sternum competely open and she can watch her daughter's heart, with pig tissue (not sure if it was a total transplant) beat. Literally, see her heart beat. Before last Monday, she was terminal. Now she has a chance. Wow. I am amazed by what these doctors can do. I am also so blessed to have Kyara in the state she is now in. The other little girl is not stable. She is fighting a terrible infection and is in isolation. Please keep her in your thoughts and prayers, too.

Good night.

What is it about the nights?

Kyara had a rough night last night. Her heart rate skyrocketed to 225-235, her blood pressure went up, her oxygen levels decreased to the 60's (normal level are>95%), and she spiked a temperature. The nurses called in the docs again. The have done some cultures on her urine, spit, and blood and know that she has pneumonia. They believe that last night she may have gone into septic shock (where in infection was just in her lungs, it has now spread to her blood vessels, urinary tract, or other parts of her body.) They have changed the antibiotic she was on the address this. Kyara is now stable and looking good. This infection is just another bump in the road toward recovery. Her swelling has decrease alot, I can actually feel bones in her hands if I push hard enough. Before her poor hands were so swollen, they looked like sausage fingers stuck on a big pillow. I could not feel bones at all. The nurse said she is really looking quite good.

Thank you for all the prayers and wonderful comments Kyara is receiving. We are very lucky and blessed to have so many people concerned with her. Willis Road Elem. is unbelievable. Quite a few classes have sent cards that the students have made and Kyara's class also sent a cute poster. I taped the poster to her wall in her room so that she can see it when she wakes up. Ms. Carlisle and Ms. Laurie, Kyara teachers, have been writing the comments up for the students in the class and I just about bawled seeing them. The people, (staff, students, and parents) at Willis Road have been so supportive of us, not just Kyara, but Skylar as well. I feel so blessed to be a part of this fantastic community.

Saturday, November 8, 2008

Gunars and Skylar are Here!




I picked up Gunars and Skylar from the Detroit airport at 6:00 last night. Skylar pulled her suitcase by herself the whole way from the airport to the car. She is getting so big! I was so glad to see Skylar and Gun. I have missed them terribly!
We grabbed some grub, headed back to the Ronald McDonald House (RMH), and got them settled in. My mom was with Kyara. Gunars then headed to the hospital to spend the night with Kyara. My mom called me maybe 2 minutes later to tell me I needed to get to the hospital. Kyara was having some problems and my mom felt uncomfortable about it. My goodness....Well, I can't leave Skylar and Kassey, so I told her Gunars was on his way and for her to come back to RMD so that I could get to the hospital (thank goodness it is within walking/running distance). When I got to Kyara's room, they were taking another xray of her chest. Gunars was standing outside and looking a little in shock and pale. Apparently, they had suctioned Kyara's breathing tube (routine maintance) and she had become VERY upset. She was kicking, pulling, gasping for air around her tube. WELCOME BACK, GUN! The nurse paged the doctors to come help. Finally, she calmed back down, the xray did not show anything new, so the doctors are not sure what caused this response. I reminded them that they had adjusted her pain and sedation medication earlier in the day and could that have anything to do with it? Possibly. Anyway, she was stable again, Gunars felt ok to stay, so after a while I headed back to RMH. I told them (Gunars and the nurse) to call if ANYTHING happens. Kyara ended up having a good night.
I was worried that Gunars would have a hard time sleeping in the chair the staff provided him, but I didn't think it would be me that had the hard night. Kassey must be teething or something because she was up at least 4-5 times in the middle of the night. The walls are very thin at RMH so I was afraid she would wake other families! She ended up in the bed with me, Skylar, and my mom (we had pushed our two twin beds together to accomodate the three of us).
This morning has gone well. Kyara has not had any more emergencies. The doctors did decide to give her a blood transfusion to assist with her red blood cell count, hermaticrit levels, and to increase oxygen to the cells. They also said she is a bit dehydrated in the vessels and the blood would help this.
This afternoon. Gunars will come back to the hospital to be with Kyara. My mom and I are planning on taking the girls to an indoor playground called Java Jungle. We have heard good things from the nurses about it.
Speaking of nurses, I must say, we have a very fortunate with the nurses we have had. Tedra and Sandra have been GREAT! You know there is a difference when the nurse take care of your child with compassion and love, versus just doing the job. Tedra spent the nights with Kyara. She had her hair braided so that it would not knot, she has been so caring, and it has meant the world to me. I felt comfortable leaving Kyara in Tedra's care, knowing she would be watching over her. Tedra should be back for tomorrow's day shift and I am so glad. I just hope she has Kyara.

Friday, November 7, 2008

New Chest Tube; WARNING PICTURES!


The doctors have placed the new chest tube in Kyara's chest. They were hoping that it would drain better, but so far it has not put out much. We are going to wait and watch what happens. If need be, they can drain the fluid manually, but so far Kyara's condition has not been bad enough to need that. Her swelling as really decreased in her face and we are waiting for ultrasound to look at her arms and hands again. Her hands are still very swollen and the doctors want to do a follow-up ultrasound to make sure that a clot has not developed.












Friday Morning

I was very happy that I did not get a phone call in the middle of the night last night, so I figured Kyara must have had a peaceful night. Well, most of this was true, until about 3:30am. Kyara's right chest tube has become clogged with tissue. Remember that when they dissected her esophagus out of her chest that it had adhered to the surrrounding body parts. So there is some floating tissue/"snot"/gross stuff that is in the space outside her lungs. The tube that goes into that space is quite small and it has become clogged with this "stuff." So, the chest tube is not draining very well, her lung as gone "down" again, and they are probably going to replace the tube with a larger one today. They will use the same site, so they will not have to cut her again. Otherwise, Kyara is doing well. She is breaking through the medication again and not very comfortable, so the pain doctors are going to come back and readjust those medicines again, too. The main doctors just came in and said that she will probably have more speed bumps, but not to worry, she is looking good.

Kassey started running a fever last night. Hopefully it is just teething. We are giving her some Tylenol. She seems fine, just has the fever and was a little restless last night.

My mom has been GREAT! She has just done whatever I ask, has not complained, and has really made this a lot easier for me. Although I tell her how much I appreciate her help, I know she will never understand how much it has meant to me. And how grateful I am to have her here helping me.

Thursday, November 6, 2008

A Little Bump in the Road

Let me begin by saying Kyara is doing well this morning. Her heartrate is continuing to drop to closer to normal and her bloodpressure is looking great.

Last night at 3:00am, I got a telephone call from the doctors at the hospital. You know how your heart just sinks and you feel like you have no breath? Well....that was me. The doctor began the call with "Kyara is fine, now..." Ok, I can breathe again! Her oxygen saturation had dropped to a very low level and the doctors had to place an emergency chest tube on the other side of her chest. So she now has chest tubes on both the right and left side. The left side had developed air in the space outside the lungs and the chest tube allowed them to drain it out. The problem has been managed, and Kyara is doing well again.

I got a call from our GI in Atlanta, Dr. Meyers, last night before I left the hospital. It meant so much to me to hear from him and to have him reassure me that everything that has been going on with Kyara is expected. I tell you what, Dr. Meyers and Nurse Kim, are unmatched. They have gone above and beyond what I would think doctors will do for you. Scottish Rite is an unbelievable Childrens Hospital. The design of the hospital, the staff, and the accomodations are second to none! We are very lucky to have that in Atlanta. Not to say that Michigan is not nice. It is nice, the doctors are doing a great job with Kyara, but Scottish Rite is special!

Dr. Coran just came in and said Kyara is doing quite well. He is very pleased with everything, and for us to remember this is a major surgery and there will be complications, but she is actually doing better than most of his patients. They are planning to wait on taking the breathing tube out for a few days due to the situation last night. They are also postponing the swallow study until later next week (this study will give us an idea of how successful the surgery was.) He said to be prepared for a leak in the site where they connected the esophagus and the stomach...this usually appears by day 9, but he has seen it at day 11 post-op. So far, Kyara has been dry (no leak) and today is day is considered day 3. If there is a leak, it will close on its own, but we will stay in the hospital until it is closed. This could take up to 3 weeks, or could be as short as 2 days after the leak.

Just to recap, Kyara is looking good. There have been some bumps in the road, but they have been expected and managed by the awesome staff here. Kyara has been very strong and is continuing to get better each day.

Address

Well- Last night was a bit crazy! My mom (bless her!) and Kassey packed up the hotel room, paid a guy $10 to help her get it all in the car, and we moved into the Ronald McDonald House. The address is...
Kyara Dzenis - Room 17
Ronald McDonald House of Ann Arbor
1600 Washington Heights
Ann Arbor, MI 48104.

Wednesday, November 5, 2008

Ronald McDonald House

We got into the Ronald McDonald House! We have not checked in yet (we have to get everything out of the hotel), but we will be there tonight. Once we get checked in I will post the address.

Kyara is doing much better tonight. The doctors are probably wait a little longer to take out her breathing tube, though, just to give her a little more time. It depends on how she does the rest of the night. She has the central line and her blood pressure and heart rate have stabilized. She seems much more comfortable. Now when she wakes up she is not as agitated, she just closes her eyes and goes back to sleep. I think she is finally getting the rest she needs to turn the corner and really get some healing going on!

I ditto all of Gunars comments on the last blog about the girls. They are amazing!! Skylar has been so understanding, Kyara is quite a trooper, and Kassey's laugh is fantastic! And as for you, Gun... I love you so much! You are my rock and balance me in a perfect way. You are the perfect person for me to go through life with. I miss you!

In addition to the last post...

The pain doctors adjusted Kyara's medication and she seems much more comfortable now. Her fever has come down some, so the doctors aren't too worried about that anymore. The doctors just did rounds again and the plan is still to take out the breathing tube tomorrow morning. I know that the last post sounded very negative, but I don't mean for it to sound that way. I am using these posts as a way to document everything that is happening and they have been a great release for me, so please understand that Kyara has been/is a strong fighter. The doctors are really quite pleased with how she looks and the way things are going. Nothing has happened that is unexpected by the doctors. She is really doing quite well. The most important thing right now is for her to relax, sleep, and heal. The doctors are doing a great job of making sure she is doing just that.

It's a new day


Kyara had a decent night last night. She is quite puffy and swollen/ She has a fever, which they are managing, and her foot is pretty swollen and cold. The doctors are going to do an ultrasound to see if there is a blood clot in her foot or leg. If there is, they plan to give her "blood thinners" to help dissolve it. Her heart rate has also increased some. Today they are planning on giving her Lasix to help her pee off the extra fluid. The doctors think that will help with the heart rate. The doctors have also decided to keep her intubated (breathing tube) until tomorrow at the earliest. They feel she needs that extra time to recover. She still has the chest tube, and it is still draining off a good amount of fluid, so that will not be removed when they take out her breathing tube. To top it all off, she has lost 2 of her IV due to them not functioning as well anymore. The doctors are going to look once more for a PIC line site; if they don't find one they will put in a central line. This will either go in her neck (not likely due to the surgery), her upper chest, or her femoral (crease of her leg, groin area). This morning she has developed some yellow secretions in her chest that the nurse believe could be pnuemonia. She is on antibiotics, so hopefully that will be taken care of soon. They will run labs to see what is causing the fever if she gets to a certain temperature.
The pain doctors have come in and increased Kyara's medications. She is breaking through some of the meds, waking up, and is very agitated. She thrashes around and tries to pull the tubes out. She will mouth that she hurts some, so the pain docs are taking care of this.
It has been very difficult to see Kyara like this. I know the picture is not the best, but it is pretty accurate description of her right now. I am hoping she is able to settle down some so that her body can heal...

Tuesday, November 4, 2008

Looking Good and Fiesty!

Today has been a long day. After the troubles this morning, Kyara has been stable the rest of the day. She has even broken through the medications a couple of times and opened her eyes. She gets quite fiesty and the nurses have nicknamed her Houdini because she has escaped their restraints a couple of times. They have her in soft restraints because of the breathing tube, NG tube, and chest tube. When she breaks through the medicines, she tries to pull the tubes out! Understandable...I wouldn't want tubes down my nose and throat either!

She is quite swollen in the face, hands, and feet. The nurses say this is from a fluid shift. They are giving her lots of fluids, and right now her body is not "processing" them. It just makes her look very puffy. They plan to give her Lasix tomorrow to help her pee these fluids off. She still has fluid pooling over her right lung. When the nurses turn her to that side, a lot of fluid drains off. This leads them to believe the chest tube was the right thing to do this morning and that she is not ready to have it taken out yet. We will see how she does tonight and in the morning. The doctors had discussed placing a PIC line in her, too, but when the nurse came with the ultrasound machine to find a good vein, she was unable to find one that was large enough to hold the catheter. Kyara has had 2 lines before and the sites have created some scar tissue which limited the places she could use for a line. The doctors are going to discuss how to address this and hopefully I will know something tomorrow morning. she still has 3 IV sites, so it is not a major problem right now. The good thing about the PIC lines is that they are more stable (secure), they can be used to draw blood from, and the TPN (IV food) doesn't hurt the veins in the PIC line like it does through an IV. The doctors said there are still other options, so we will see what they decide.

We are number one on the waiting list at Ronald McDonald House, so hopefully it will open soon. Some people have asked about sending Kyara cards...because she is changing rooms so often, it would be best to wait until we either get on the main floor or in the Ronald McDonald House. I will post an address as soon as I know something. Sorry about the delay, I would hate for anything to get lost; it is a HUGE hospital!

I have been at the hospital most of the day today, my mom is there with Kyara now. I am going to get some sleep before another big day tomorrow. The doctors make rounds around 7:00am, so I plan on getting to the hospital around 6:00am. I don't want to miss the doctors! I have heard some rumblings that they may extubate (take out her breathing tube) tomorrow night. We will see....Keep your fingers crossed!

Thank you for all of the sweet comments on Kyara's blog. I have really enjoyed reading them and they have really lifted my spirits! I have read them to Kyara, and I will read them to her again when she wakes. Thank you, we love you!

Tuesday Morning




This morning has been hectic to say the least. I spent the night at the hotel so that I would have a good night rest before a long day today. I got to the hospital at 6:00 am and they were working hard on Kyara. At 5:30 am her oxygen saturation had decreased to a level they were not at all happy with. They took an x-ray and discovered that her right lung was "down." There was so much fluid around her lung that it was not able to open properly. The doctors were called STAT and it was quickly determined that she needed a chest tube. This is a drain tube that is place through the chest wall between her ribs and into the space around the lungs. It is used to drain all the extra fluid off the outside of the lungs so that it can work again. After the chest tube was in place, and ALOT of fluid drained off, they took another xray and it is looking good. The doctors have also ordered a PIC line for her. This is an IV will be able to stay in longer than normal IVs.
Gunars, Skylar and my Dad left today. I cried like a baby. Skylar has been so strong through all of this. Gunars has been great, too. He watched over Kyara like a hawk. I know that he is relieved as I am that Kyara is in stable condition. I am already missing them, but, as Skylar told me, "its only 3 days" until they come back. My dad was very helpful while he was here. He and my mom took care of Skylar and Kassey so that Gunars and I could concentrate on Kyara. I was nice to know they were being looked after.

Monday, November 3, 2008

Kyara is in ICU and doing well



Dr. Coran said that everything went very well, better than normal. The only big issue was that the esophagus was stuck to the Aorta. He was a little nervous about separating the the two, but there were no complications, she did not bleed. An esophagus is normally stretchy, like a rubber band. In Kyara's case it was like a rope, very rigid. It was in truly bad shape. The surgery only took 3 hours, they can last 5 to 6 hours. In the picture you can see she has one tube coming out of her nose (a nasogastric or NG tube). This will "supplement" her feeding until she is fully recovered. She should be able to eat foods through her mouth in the near future. There is another tube coming out of her mouth (an endotracheal or ET tube). This does the breathing for Kyara. The Dr's want Kyara's body to concentrate on recovering, so even the breathing is done by a machine at this point. The lungs are also usually very weak in patients with this kind of surgery. In Kyara's case, right after the surgery, she was already breathing very well. They considered letting her breathe on her own. This has never been a consideration in previous patients, but Kyara's lungs appear to be so strong that they thought about it. Although they decided against removing it, the strength of Kyara's lungs would not come as a surprise to those that know Kyara well. Her lung capacity is truly extraordinary. She can scream (when crying) like nobody in the Western Hemisphere. If you upset Kyara by looking at her funny she will scream like if somebody chopped her finger off. Even when talking, her volume is a few decibels higher than normal. :)

Kyara will be in ICU for a couple of days, we don't know exactly how long yet. Dr. Coran is going to come by tomorrow to see her and we will find out more then. Kyara will be in ICU until Dr. Coran feels it is safe to remove her endotracheal (breathing) tube. Once we leave the ICU we will go back to the main recovery unit. We are guessing she will be there for another week-10 days. Again we are guessing. We are still staying at the Holiday Inn, the Ronald McDonald house has not had any openings, yet, but the caseworker here at the hospital is working on that for us. Many people have asked about the address...we are moving around so much right now, we don't know where we will be from one night to the next. If we get in the Ronald McDonald house, that might be the best address to give out. We will let you know, sorry for the lack of information.

A little note on our brave Kyara: Once in the room, while heavily sedated, apparently Kyara did sit up and try to take her tube out of her mouth. She is supposed to be sleeping (heavily sedated) for the next several days. They had to restrain her and give her some more medication. They commented how strong Kyara must be. They have no idea...

She's in Recovery!

Kyara is in recovery. We just spoke with Dr. Coran and he said everything went great. He had no big problems. She is intubated (a tube to help her breathe) and has a NG tube (a tube from her nose to her stomach, which will be used to supplement her feedings until she is healed.) She has "given her G-tube back to the hospital" and will not have it anymore. They are going to take her to ICU in the next hour and we will get to see her then. We can't wait to see her! But, everything looks good so far and we are so thankful for everything. The comments have really been great and we appreciate all the love, support, and prayers. Of course, she still has alot of recovery to go, but to know the surgery is done and went well is a major relief.

2 hours in and they are still working

We just got an update from the OR. Kyara is doing fine, they are still working on her, though.

Surgery has started!

We just got word that the surgery has started! The time is 10:25 am. We are expecting the surgery to last about 5 hours. We will post as we get updates.

Kyara is in surgery




Last night was a bit of a long night for Gunars and Kyara. Gunars stayed at the hospital and I went back to the hotel (we were in a double room at the hospital and there is not room for us both to stay the night with her). Kyara had a bowel prep for today's surgery and the medicine really started to kick in at 9:00 pm. Anyone who has a bowel prep can tell you, it can get a little messy! Kyara and Gunars were troopers, though! Around midnight, they turned off the medicine and they were able to get some sleep. I came back at 6:00am so that I would be here when she woke up, and before they took her down to pre-op.
Kyara was taken down to the pre-op area at 7:15 this morning. They had some cool paint/markers that smelled! She loved them. After talking to anesthesia and having all the pre-op stuff done, they took Kyara to surgery at 7:45. She was very brave. We are praying for her safety and for Dr. Coran to be successful with the operations. We are told by everyone that he is amazing and that she is in great hands. I know this is true on many levels! Thank you for the many prayers and well wishes Kyara has been receiving. I know they are helping.


My mom and dad are with Skylar and Kassey. They are planning on coming over to the hospital later this morning/afternoon. Skylar is quite a trooper and has been very calm and understanding through this time. She has been GREAT! I am very proud of her. Kyara will be in surgery for 5-6 hours, so when she gets out and is settled, I will post again.

Saturday, November 1, 2008

Gators at UofM







Dr. Meyers and Nurse Kim - Just for You!!

Kyara is outside the UofM football stadium. GO GATORS! Since Kyara will have a successful surgery at UofM, we will cheer for the Wolverines as an adopted team, GO BLUE!

We have arrived!

We left Sharpsburg last night a little before 7:00pm. We drove until my eyes were straining and I could not wait to lay in bed. We got up this morning and finished the long drive. The girls were amazing in the car. Thank you, Ms. Carlisle, Ms. Laurie, and Ms. Michelle for the wonderful activities. Kyara and Skylar stayed busy the whole ride! We got to Ann Arbor early enough to go to the Hands On Museum. It is kind of a cross between the SciTrek and the Children's Museum in Atlanta. The girls (and Gunars) had a great time! We also went to the UofM football stadium and took some pictures. Finally, we headed to the hotel to check in and watch the last half of the FLORIDA/Georgia football game. It was a GREAT day! GO GATORS!

Kyara will check-in at the hospital tomorrow morning for pre-op stuff. They will give her medicine to clean out and prepare her colon in case the stomach is not a good option. She is excited about the hopeful outcome of the surgery and is having a hard time settling in to go to sleep tonight. I can understand, I am feeling the same way!

Thank you for all of the sweet comments! We have been reading them to Kyara and she is tickled by the love! Please keep the prayers, positive thoughts, and warm wishes coming. We have seen how much they help! Take care....