Kyara Dzenis

Kyara Dzenis

Thursday, December 25, 2008

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.

Monday, December 22, 2008

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!

Sunday, December 21, 2008

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

Saturday, December 20, 2008

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 :)

Friday, December 19, 2008

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!

Thursday, December 18, 2008

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.

Wednesday, December 17, 2008

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!!

Tuesday, December 16, 2008

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
















Monday, December 15, 2008

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.

Sunday, December 14, 2008

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!

Saturday, December 13, 2008

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...

Friday, December 12, 2008

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.

Wednesday, December 10, 2008

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.

Monday, December 8, 2008

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.

Sunday, December 7, 2008

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!!!

Thursday, December 4, 2008

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.

Wednesday, December 3, 2008

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 :)

Monday, December 1, 2008

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.