MERRY CHRISTMAS!!

We have so much to be thankful for this year. I am so excited to be home with my family and to be able to spend the holidays with the people we love. We are all in good health and we have been so touched by the love that has been poured on our family. I would like to thank Poplar Road Elementary for having a coin drive and donating the money to the Ronald McDonald House of Ann Arbor. The RMH was wonderful for us and the donation really touched my heart. In fact, the letter made me cry. I have been brainstorming ways to help out the community the way we were helped during Kyara's hospital stay. I am going to look into shelters and RMH in the area where we can provide dinners or something. While staying at RMH, the dinners made the most difference to me! At the hospital, they were very generous with stuffed animals and books for the kids, in fact, it got to the point we said thank you, but no thank you :). But, to be able to run back to the RMH and have a hot meal, and not have to worry about cooking was tremendous! In my opinion, the meals were a great relief!

Kyara is doing great! She is eating more and more everyday. At first, I think she had some apprehension about eating, but as she eats she is realizing that it is ok. The gagging has stopped and she is able to eat small meals. We make sure everything is cut into small pieces, she has something to drink, and that she chews...alot! Skylar and Kassey are doing great as well.

I will update this blog periodically, but not as often as I have in the past, so please check in with us when you have the chance. In the meantime, we wish everyone a very Merry Christmas, lots of love, and heaps of thanks for all the support you have provided our family.

We're HOME!!!!!

We got in at about 10:30 last night. While Gunars and my dad unloaded the car, my mom and I got the girls to bed. I did not even touch the stuff last night. We went straight to bed, too. It felt SOOOO good to sleep in my bed. Kassey even slept through the night (she hasn't done that since we left for Michigan!) She must have known she was home! Kyara is doing well. She ate some cereal for breakfast and NO GAGGING!! She and Skylar are trying to help me get everything put away this morning.

While we were gone, our dishwasher broke. Gunars set it to wash before leaving on Thursday, luckily he had to run back to the house to drop off a basket, and found the kitchen flooded. He called his dad to help clean it up and jumped back in the truck to head to Michigan. Well, when we got home, I made the mistake of opening the door to the dishwasher to see what was going on.... STINKY!! Oh...My....GOODNESS!!!! I have called a repair man to come fix it today. It reeks. I don't want him to have to open it!

Back to Kyara...

Dr. Coran said she had a stricture in the neoesophagus (the upper portion that is still left). He opened it, but it may stricture down again. Luckily it is supposed to respond to dilations better than before the surgery. If Dr. Meyers feels comfortable with doing her dilations, Dr. Coran said he would talk him through it so that we don't have to go all the way back to Michigan for an follow-up dilations. That would be HUGE! I have had enough snow to last several years!!!

This is still going to be a long process. Although Kyara is eating some mushy foods, we are still having to work on the amount of food she is taking in and work on chewing so that she can eat more solid foods. Right now we have to stay away from breads, pasta, and meats. Hopefully soon we will be able to add more foods into the diet, but we are tickled pink with the way things are going. Thank you for all of your support through this ordeal. We are VERY blessed!

Peace and Chilllllllll out

Yesterday Kyara's esophogus had tightened up. They decided to dialate it yesterday to help open it back up. It seems to have worked because Dr. Coran has sent the crew home! Dr. Coran wishes them a good trip and said to call him in a week. That's right, the Dzenis' and our mom are headed back to the good ole peach state. They are trying to drive the whole way today. Genie just sent me a picture and it honestly looks like a winter wonder land up there. When I talked to her, they were driving at about 60 miles per hour and Genie was the driver. It will be great to have the clan back from Michigan, even thought Gunars has to work tomorrow through Wednesday. Just like Genie said, "We can't all be teachers." Welcome back Kyara, Genie, Gunars, Skylar, and Mom. Welcome back for good.
Written by Matt,
Edited by Allen

Guess What...Another Bump!

Kyara has been eating pretty well. She doesn't eat much at a time which is not a surprise, but at least once a meal she gags and throws up the food, much like she did before we got here. We are not sure if it is psychological or if there is something there to be worried about, so we called the doctor this morning. Before we headed home we wanted to check and make sure this was "par for the course." We continued to pack up, the girls and Gunars played in the snow, and just as we were about to leave we got word from Dr. Coran..."Don't leave." He wants to scope and dilate her on Monday. It would be outpatient and then we can head home. I explained that we want the best for Kyara and if that is what she needs, we will stay, but is there anyway he could do it today (Saturday) or tomorrow (Sunday) so that we can get on home? I am waiting to hear back from him. Dr. Coran has to call the hospital, his staff, and try to work around everyone's schedule. We will let you know how it turns out :)

We're OUT!!

Guess what?! After a LONG day of waiting, Kyara was finally discharged at 4:45 this afternoon!! Gunars, Skylar, and Kyara trucked through the snow on the way back to the Ronald McDonald House. The snow here is about 10 inches deep and it is crazy. Gunars took the girls sledding in the arboretum, Skylar loved it, but Kyara was cold. I guess 7 weeks in the heated hospital doesn't get you ready for the freezing cold!

So, we posted some pictures...obviously.

The first picture is of Kyara NOT taking a nap. She says that naptime at school is her favorite time of the day, and now we know why :)

The second picture is of Sam and Kyara. Sam was our favorite nurse while we were on the floor. She really took care of Kyara and had no problems standing up for us if we had concerns with the procedures the residents were thinking about doing to Kyara. She always had Kyara's best interest in mind.

The third picture is all of us infront of Kyara's place on the "Wall of Courage" in the PICU. They put the picture and paragraph about Kyara up today so it was nice to be able to see it before going home.

Fourth picture is of Skylar and Kyara in the snow on the way back to the RMH. The sidewalk had been plowed, the snow on the grass was actually much deeper. You can see how deep the snow is by the marks on Kyara's knees. She step off the side walk!

Last pictures is of the Dzenis family before discharge. We walked to the "indoor jungle" in the hospital. It was great to have everyone together again!

Thank you all for the prayers and warm wishes. We are still working on eating with Kyara. She is taking some foods by mouth, but it is all mushy foods. Over the course of the next 6 months or so, we hope Kyara will be able to consume normal foods.

We plan to leave here tomorrow (Saturday) and head straight home! I can't wait to get to our house and sleep in my bed!

Eating Eggs

Today Kyara was cleared to eat mushy foods. She was able to eat scrambled eggs and mashed potatoes. She also ate a little applesauce. Dr. Coran is very pleased with the way she looks. We wished she would eat more, but it will come. Until then, we will supplement with a high calorie nutritional drink. Dr. Coran said he is planning to discharge Kyara tomorrow as long as there are no surprises before now and then. We are planning on staying until Saturday...the weather is AWFUL!

Gunars and Skylar are on their way up. They got stuck in traffic outside Cinncinatti for more than 2 hours and went only 4 miles. They are moving again and trying to beat the storm that is coming this way. I keep telling Gunars to drive slow, and I think he is getting a bit annoyed with my warnings. I have been saying the same thing for 2 days, now. He is a smart fellow, I am sure he got the point the first time I said something, but I am worried about them. I want them to arrive safe and sound tonight. I guess I can be a bit nagging...

Mom is staying with Kyara tonight so that I will be at the Ronald McDonald House when Gunars and Skylar arrive. My mom has been such a trooper through all of this. She has let me be moody and bossy and has taken it all in stride. It has been a huge help having her here and I don't know what I would have done without her.

More Pics

Kyara got to eat some soup tonight. Hopefully she will eat more tomorrow. She did not each much today. She is also showing how well her stomach is healing. She had an incision from her belly button to just under her xiphoid process. Kyara also had her NJ tube removed today, so no more tubes in her nose! She said, "Mommy, now I can smell!" We are absolutely thrilled with today's results. Thank you so much for all of the prayers!

Gunars and Skylar are coming up tomorrow. We are also expecting a winter storm here. Another 2-4 inches of snow and sleet tomorrow night. I pray they arrive safely.

Kyara's swallow study

This is her x-ray about 30 minutes after she swallowed the contrast. I was not able to take pictures during the actual procedure, but this is what it looked like after. When looking at it remember it is taken from the top with her lying on her back. So what is on the right side of the picture is really her left. It is like she is looking at us.

The bright white blob on the left side of her chest is her stomach. It is full of contrast and barium so that we can see it. What we were looking for was any of the bright white to go out of the space about 1-2 rib below her chin. In the last study, she had the bright white (contrast) leak out of her "esophagus" and pool to the right side of her chest. You can see in this xray, there is not any bright white to the right of her spine. This is GOOD! Also lower in her belly area you can see some more bright white (it is in the cloudy white area). This is contrast in her intestines. This means that her stomach is emptying fine. Everything looks great! I hope I explained it so that you can kinda tell what you are looking at. :)

Surfs Up!!!

I am typing what Kyara says....

GOOD NEWS! NO LEAK!!

Kyara gets right to the point! We had the swallow study at 1:00 and it out GREAT. Dr. Coran is back in town and came in for the study. He said the leak is completely healed, the opening between the stomach and the esophagus is wide open (good thing, this is where food will get into her stomach), and they pulled out her NJ tube. Dr. Coran said the "esophagus" and stomach look beautiful. Perfect. She is eating soup today... high calorie drinks tomorrow. The plan is to then eat mushy solids on Friday and if that works ok, then discharge maybe Saturday!!!!! I can't believe it. I am beside myself with excitement and happiness. This is exactly what we have been praying for. In God's time, she has healed up perfect! In fact, Dr. Coran said he doesn't think it is necessary to scope her because she looks so good!
I have some pictures and we walked all over the hospital trying to find a place that will let us post them, but no luck. I will post the pictures as soon as I can from the Ronald McDonald House!!

YIPEE!!

Tomorrow is the next swallow study

As the title implies, tomorrow we will go down to radiology for anothre swallow study at 1:00 pm. The doctors will have Kyara drink some contrast while lying on her back under this huge machine and we will watch on the monitor to see where the contrast goes. If the leak is healed, it will go straight down. If there is still a leak, we will be able to see most of the contrast go straight down and some go out to the side and create a dark "shadow" next to her "esophagus." Last week I could tell right away that the leak was still there because it looked like a small balloon next to her esophagus. I am praying that the leak will be sealed and we can begin the next phase...eating.

Complication just arose while was writing the blog. Kyara's NJ tube (feeding tube) is either crimped or clogged and not letting feeds get into her body. We (the nurses and I) have tried different strategies to unclog, but have not been successful. The nurse, Sam, is paging the doctors right now to let them know what is happening. I am guessing if it is crimped or they can't get it unclogged, they will have to replace it (back to the Operating Room). I am SO ready for Kyara to get better!!!!

Pictures from Monday and Tuesday

Graduation Day

Kyara graduated from physical therapy today. Mr. Dan arm wrestled her, and Kyara won, so she is free from PT. It was a bit more involved than that, she had to run, stand on one foot, walk up and down stairs, and prove she could handle daily activities. She passed with flying colors. Mr. Dan and Kyara also played soccer, Kyara won! She must have megged him 10 times! Somehow his legs kept opening right when the ball would get to them... hehehe.

We are still dealing with thrush issues. I think this is what is making Kyara gag and dry heave. She has nasty "curtains" of thick, sticky gunk that grow from the roof of her mouth to her tongue. We are now swabbing the area with nystatin and she is still on antifungal medication to try to fight the thrush. After we suction these curtain out of the back of her mouth, she does not gag anymore. She is on day 8 of the antifungal meds and the doctors said it will take 7-10 days to see improvement, so I expect it to be getting better, now.

Sandy, one of the PICU nurses that took care of Kyara, came to see her today. It was nice to see a familiar face! We were informed that Kyara will be able to have her picture and a paragraph about her posted on the "Wall of Courage" outside the PICU. This wall is for kids who have stayed in the PICU for 1 month or longer, those that have passed and those who have survived. This is the wall that had the quote I mentioned in a previous post, "We remember not the days, but the moments." I am very proud to have Kyara up on the wall, although I would have preferred to not have spent as much time in the PICU!! It is nice that the nurses what to honor those patients that they have gotten to know well because of the length of stay they have in the unit.

Wednesday is right around the corner and I am nervously awaiting the swallow study. I pray the leak will be healed and I hate that I have a feeling in my gut that says it will still be there. I think maybe it is a defensive mechanism at this point, pray for the best and expect the worst. That way I am not too disappointed if things are not fully healed. Last week I was sure the leak would be healed and Kyara and I had discussed what she would want to eat when it was over. Then we the leak was still there it was a disappointment for both of us. I don't want to make that mistake again, so I am being more cautious with what I say to Kyara and to myself. I hope and pray this leak will be healed and we will begin the next phase in Kyara's journey.

I know I have not posted pictures in the last few blogs, I will add them as soon as I can. I am sorry! It has been difficult to get all the parts together, have an open computer at the Ronald McDonald House, and have the time and energy to get it done. I wish the computer here at the hospital would let me post the pictures, but I understand they don't want people abusing the USB ports.

Tour de Hospital

Kyara may not be ready for Tour de France yet, but buddy she has the hospital down pat! Mr. Dan, the physical therapist let us borrow the trike for the weekend with the promise we would ride it. I think Kyara just about rode the wheels off the bike! She was all over the hospital. We found areas we had never explored. There was an area that had an indoor "jungle" complete with waterfall and bamboo! They had patio tables and umbrellas to sit at and enjoy the nature. We pulled up for a rest at the tables and had a sweet mommy-daughter talk. I ca n't remember how it got started, but I am pretty sure we were talking about Cars...the movie. Somehow we got on the subject of gasoline. Kyara said, "Like the gasoline you put on my lips everyday..." What gasoline do I put on her lips? "You know, so that my lips won't get dry." OHHH, the VASOLINE! Funny girl!!! I tell her she can win the races now that she has gasoline on her lips :)

Kassey and Mom are feeling better. Kassey has learned to climb up the stairs, I am not sure I am excited about this one. I hope she learns to go down them soon, too! Good timing for Mom and Kassey to feel better, because Dad is leaving tomorrow morning. He has been helpful to have here for the past few days.

Skylar had her Christmas program today and I am so sad that I missed it. Gunars said she was singing her heart out. Someone recorded it, so I will get to see it when I get home, its not the same, but it is better than nothing. Skylar also got the spend the night at her cousins' house last night. She was so excited. All week last week she kept telling me she couldn't wait to spend the night with her cousins. Thanks Aunt Missy and Uncle Allen!

Wednesday is the next big day for Kyara, we are waiting for the swallow study to determine if the leak is closed. Please continue to send the prayers for it to be healed on Wednesday!! We greatly appreciate the support!

Sick Helpers...

Well, Kassey and Mom are sick. Luckily my dad came into town on Thursday, so he and I are switching back and forth at the hospital. Mom is feeling better today, and Kassey has a runny nose and can hardly breathe when she is nursing, but nothing too serious. We will watch Kassey and keep her away from the hospital until she is feeling better.

Kyara is in a holding pattern, we will do another swallow study on Wednesday and hopefully the leak will finally be closed...

NG Tube Removed Yesterday

Yesterday was pretty big for Kyara. The doctors removed the nasogastric (NG) tube that was draining her stomach. She is not gagging and dry heaving as much now that this tube is gone. So, one nostril is free, one to go! Kyara has been very active playing on the WII and the Nintendo Game Cube in the activity room. Her personality is back full force most of the time. She has been in a much better mood! We are really just waiting around now. She still has the thrush which is NASTY! We clean her mouth every 4 hours and still it grows back. It looks like white curtains hanging from the roof of her mouth to her tongue. It is thick and sticky, gross stuff. Anyway, this should be responding to the medications soon, so we are just waiting around until then.

I will try to post a new picture later, I can't do it at the hospital anymore.

Some Recent Pictures...

The computer at the Ronald McDonald House is working, so I am able to post some pictures.

I am not sure why, but the pictures came up in reverse order of time. The last picture was when Kyara was still in the PICU. The nurse is Tedra - one of our favorite nurses! Skylar is playing in the snow during Thanksgiving. Kyara and I tried to take a picture of ourselves - a little SCARY! And of course, I put pictures of Kyara on the trike racing Mr. Dan! She also got to swing on a swing in Physical Therapy today. Loads of fun!

Swallow Study

Kyara had another swallow study today to determine if there was still a leak in the suture line between her esophagus and stomach. The doctors were feeling pretty confident that the leak would have healed by today, unfortunately this was not the case. The leak is still there, so we are still waiting to be able to begin feeding by mouth. I don't know when they will check again, but I am very sad and disappointed by today's results. I was expecting better news and it came like a punch in the stomach to see the contrast leak out of her esophagus during the study. Kyara was a trooper through it. They had her laying on her back and drinking the contrast through a straw. I have never drank contrast, but I hear it is gross. Before going down, we decided to pretend the contrast was sweet tea. After her test, Kyara sat up and said "I tried to make it taste like sweet tea, but I couldn't." Oh, my heart just broke. She doesn't realize why she was drinking this nasty stuff, she is just doing her best to make it taste like sweet tea, and was upset that she was not able to make it taste that way.

I have lots of pictures to post, but I am having difficulties posting. The computer at the hospital is not recognizing my disk, so I can't access them. Once we have it straightened out, I will post some good pictures.

Kyara will be Kyara

Kyara is about the same today. In reality, Kyara is getting a little better everyday. Sometimes we have little setbacks that seem huge to me, but in the scale of things, things are looking better. It's just such a long process (much longer than we anticipated). When a potential delay occurs (such as thrush) it feels like a huge setback, but it's ok, it's just a matter of time I suppose. We also have a new "neighbor" in our room. This patient has violent seizures that shake the bed and scare Kyara. She is getting used to them, but it's just a reminder to me that we really don't have things too bad. Kyara's situation is much better than a lot of patients.

Today during Physical Therapy, Mr. Dan brought a tricycle for Kyara to ride. And did she ever! She was riding up and down the hospital corridors. Mr. Dan had to run at times to keep up with her. She was going all over the place! It was funny. Picture somebody sitting in a room looking at the hallway when a little girl in a red tricycle is speeding by, in and out of sight, and then a grown man with a lab coat running in and out. Kyara is still not at full strength and walks like a "weeble wooble" as Skylar pointed out.

Also, during Speech Therapy two ladies came to the room. They tried to get Kyara to talk but she would not say a word. She stared into space, a frown on her face, and would not say a word. They tried and tried with no success. Kyara can and has talked but I couldn't understand why she would not say a thing. As soon as they left the room Kyara said, "I did not want to talk because one of them looked crazy". WHAT?! I'll let you be the judge. She had a stern look, bushy eyebrows and bushy hair. Kind of like a female version of Albert Einstein with a serious expression. What would you do? Kyara later did say that she would talk to the other one, but "not the crazy one". Kyara is a riot... this is the Kyara we all love. Now I have to explain to the Speech Therapists tomorrow that Kyara will only talk to one of them. Hopefully no explanation will be needed.

New Bumps...

For the past day or two Kyara has been doing alot of dry heaving. It is terrible to watch. She is not able to bring anything up because she has the NG tube that is draining her stomach. She has also developed a bad case of thrush in her mouth and throat. They say that people with breathing tubes for extended periods of time will develop thrush. The doctors started medication for it yesterday, but said it will probably take 7-10 days to see any improvement. The thrush will not be gone for 2-3 weeks! The thrush is making it painful for her to swallow and I am afraid it will delay her eating.

Speaking of eating, we will do the swallow study on Wednesday, and if there is no leak, she will be cleared to start foods by mouth. We will start with liquids and work up to solids. This will probably be a long process, but we are looking forward to getting it started.

BUSY!! BUSY!!

Things here have been BUSY! Gunars and Skylar are here for the weekend, so we have been spending our time with all the girls. Kyara is fine, we are dealing with some personality changes and anger on her part, but she is getting off the drugs, so we are just hanging tight. Here on the floor we are more responsible for Kyara's care, bathing, changing beds, etc. The nurses are very busy, they have 6 or more patients each! In ICU we had one on one attention, so it is quite a change. It must be a difficult job to deal with so many patients and the PARENTS!! I am sure we are bugging them to death!

Kyara is having a swallow test on Wednesday. We pray that the leak is sealed, then we will start feeding by mouth. If the leak is sealed, Kyara has to cooperate with eating by mouth. After all this time, you would think she would be chomping at the bit, but she is still dealing with withdrawals and not much is making her happy right now. As she gets the drugs out of her system, things should get better.

Thank you for your concern, calls, and email. I am sorry I have not posted in the last couple of days. The computer at the Ronald McDonald House was not working yesterday, and as I have said before, things here have been crazy. By the way, did anyone see the SEC Championship Game....GO GATORS!!!

Dazed and Confused

Kyara was on IV pain and sedation medications for almost 1 month until this past Monday. She was doing surprisingly well on these medications. Even while she had the breathing tube, she was awake and playing Candyland or Trouble with us. She was playful and smiling at times. Of course, she was sleeping alot, too, but when she was awake she was "with it." Since the doctors changed her to medications that went through her feeding tube, she has be slowly declining. She is not as responsive. She sits and stares at the walls. At PT today she stared in a wall mirror for almost the entire hour. There is no smiling. I was very concerned about the change in her. In fact, some of the nurses from the PICU came to see her and were also concerned about her. Mr. Dan (the Physical Therapist) reported his concerns to the nurses and also paged the doctors. I have since discussed her condition with our new doctor (the fellow that is on the floor, our other doctors work with the ICU kids). They are going to with-hold her next medication dose to see if she is able to get out of the fog she is in. They want to make sure it is the medication that is causing this effect in her. The methadone she is on has a long 1/2 life, so it will be slow going out of her body. If she shows signs of withdrawal, they will give her "rescue drugs". We will see how it goes.

In more positive news, they are adjusting her tube feedings to allow her time off. Right now Kyara is on a continuous feed, that means she is connected to the feeding pump all the time. Tonight, they are going to switch her feeding rate so that she has 16 ml more food an hour going into her body. This will allow her 4 hours of free time tomorrow. Yipee!!

In my last post I wrote about not really wanting to leave the ICU. I know I sounded very selfish. I felt very selfish and self-absorbed after writing it. Here I am complaining about having to share a room when 2 families at the Ronald McDonald House lost their babies this week. Those parents would have loved for their child to have been well enough to move to a double room! I am embarrassed and ashamed for my previous thoughts. I am also trying to be as honest as I can about how I feel and what is happening up here. I am using this as a journal, as well as a communication device, so please understand. I am counting our many blessing and I thank God that Kyara is healing and recovering from the surgery, leaks, and infections. I am also so thankful for all of the support you have provided our family.

Movin' On Up

Today Kyara had another "swallow study" done. She still has a leak, but it is now about 1 centimeter. This is much better than it was previously. They will not allow her to eat with the leak, so we will do another one late next week. Dr. Coran feels confident it will have healed by then. She is weaning on the medications each day, too. Kyara is doing great.

I have a bit of a conflict going on inside my head. Today, Kyara was moved out of the ICU and to a regular floor. I am thrilled that she is well enough to be out of ICU, but I have some sadness in my heart as well. We have gotten to know some of the PICU nurses. Tedra and Sandy (two of the PICU nurses) have been awesome! They followed Kyara during Kyara's time in the ICU, so whenever they worked, they were our nurse. I am really going to miss them. It is nice to have a connection to the people that are working on your daughter. We also moved from a private room to a shared room. We are sharing with a 14 month old girl. Her mother seems very nice, but this afternoon, the little girl couldn't stop crying...take that back...screaming. Poor Kyara was holding her head and shaking it side to side, because her head was hurting from the screaming. There is no where we could go because she is hooked up to oxygen, so we had to wait it out. The mother said they will be discharged on Saturday, but who knows who will take her place. Sometimes you have to be thankful for the blessings you have. I don't want to sound like I am complaining, on the new floor, they have 2 playrooms and lots that Kyara will be able to do, so it is a good move for her. I am so thankful that Kyara is well enough to get moved to this floor and I am sure she will be up and moving on her own soon!

Some people have asked how Kyara did at PT today, well, today she participated...somewhat. Mom was with her and she said there was no possum today. After we had moved rooms, Kyara looked sad. I asked her if she was ok. She said "I don't think Mr. Dan will find me." I think Kyara is holding out and really likes PT after all.

Playing Possum

Kyara is doing GREAT! Today we have another "swallow study" at 9:30 to see about the leak. This will give us a good idea about how she is healing, but everything is looking good. The doctors are expecting the leak to still be there, but to be smaller.

Yesterday Kyara had physical therapy (PT). For those of you who don't really know Kyara... she is very strong willed. Well, she has decided that she is not interested in PT. Dan, her physical therapist, has his work cut out for him! So... as soon as Dan walked in the door, Kyara closed her eyes and pretended to be sleeping. Dan was very upbeat, talking to her, trying to get her to open her eyes and play with him. She was having nothing of it. Dan got the wheelchair and told her they were going to go for a ride downstairs to the lobby and then to the physical therapy room. We sat her up, moved her to the side of the bed, helped her "sleep walk" to the chair, and got her strapped in. The whole time, Kyara pretended to be asleep; her eyes closed, but she was doing alot of the work. In the chair, had she been asleep, she would have fallen out, but she was sitting upright and steady, EYES CLOSED!! We went downstairs, out to the lobby, stopped and talked to some nurses from the PICU, then headed to the PT room. Still, Kyara pretended to be asleep. Once in the PT room, Dan told her he was going to get a cold washcloth to help her wake up. He left and I mentioned to her that now would be a great time to open her eyes. Still nothing! When he came back and told her he was going to put the washcloth on her legs to help her wake-up, her eyes FLEW open, nice and big!! Suddenly our posssum was awake! We will see what tricks she has instore for Dan today :)

Let's Get Physical...

Today is 4 weeks since Kyara's surgery. Not quite the 10-14 days we expected, but we are so thrilled with the progress Kyara is making. The time we spend here is not that important. As long as Kyara heals and has a successful surgery, I am thrilled. The doctors and the nurses here have been great! We are very blessed to have found Dr. Coran and his staff to perform this surgery for Kyara.

Today physical therapy came in to see Kyara. They are working to help her get her strength back. Dan is the physical therapist that we saw today. Kyara was a bit resistant to Dan at first, but eventually he won her over. Dan had Kyara up out of bed. He helped her get into a wheelchair that has a very low back so that she could work on sitting by herself. He is bringing some fun toys for her to play with tomorrow. We are also blowing lots of bubbles to help her lungs regain some strength and to help get some of the gunk out.

The doctors have also decided to switch most of Kyara's medications from IV form to oral (or in her case: thru her feeding tube in her nose). They will continue to wean her medications each day, while still watching for signs of withdrawal. The doctors have some "rescue" IV drugs ordered in case she shows any signs of withdrawal. If she tolerates the change in medications from IV to oral ok, we may get out of the ICU on Wednesday. This is going to be a big day because we will also be doing another swallow study on Wednesday to see if the leak is still present. If there is no sign of a leak, we will slowly start working on feeding by mouth. If there is ANY evidence of the leak, we will wait for another couple days to a week and do another swallow study. I pray the leak is gone.

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.

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."

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!

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.

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!

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!

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.

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.

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!

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!

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.

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.

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.

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!

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 :)

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.

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!!

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.

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!

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!

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.

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.