Update on Kyson plus video

The last two days have been really good days for Kyson. He is well loved around this PICU even though he is super onery a lot:) He tells almost everyone who gets near him..."don't talk to me!" Despite this, I know of several nurses who say Kyson is their favorite patient:) If you can get him to forget for just a second that he is in the hospital his little personality shines through and I love it!!! Here's a little video of one of those special moments. The volunteer's name is Nancy and she comes by almost daily to try and cheer Kyson up. Some days he wants nothing to do with her but as you can see he will warm up to you once he knows he can trust you won't give him big owies.



What's the plan for Kyson now? Well, for those who don't know, Kyson had another heart catheterization on Tuesday to do a fenestration between his Fontan conduit and his atrium (confusing I know but just think of it as another way for the blood to escape the top chamber of the heart to relieve some of the pressure it is working against). We were all very excited when we heard it was successful, hoping it would slow down his drainage significantly. Well, Wednesday morning they did an echocardiogram to see how the fenestration was doing. They were so disappointed to find that there was no longer any blood flow across it, thus it had probably already clotted off. I guess that fenestration was not meant to be!

Now that the fenestration was unsuccessful the only other option left is to do a thoracic duct ligation. I've tried finding information about it online and haven't been too successful. Pretty much they go in and seal off his thoracic duct (where the drainage mostly comes from) to prevent it from leaking into his chest cavity. While in there they would also coat his lungs to seal them off as well. This is more than likely something they will have to "unzip" his chest again for...so sad! They will give him the weekend to see how he drains and if there is no progress next week he will go back to the OR. I'm praying for a miracle but if it's the Lord's will that he goes back for surgery then I will accept that and be here for Kyson. I do have complete faith and trust in the Lord and I know he has been with us every step of the way. Sometimes it is hard to understand why certain things happen a certain way, but I know the Lord is in complete control. We will get through this and hopefully emerge better people in the end.

Celebrating Easter Hospital Style

Despite being in the hospital still we had an enjoyable Easter. Kyson got to go on a couple easter egg hunts and he got to paint easter eggs at the hospital. Here's some pictures of the fun we've had!

First of all my two sisters, Natalie and Christy, came to help Kyson color some easter eggs. He had a great time!



Then later that day our friend from child life brought some easter eggs filled with stickers, balls, cars, and other toys for him to find around the PICU. He was so excited he was practically running to get them. He really didn't enjoy getting out of bed at that time so it was fun to see him get some energy!





After seeing Kyson get some energy from the egg hunt we started brain storming to think of some other things to motivate him to get out of bed. Again our friend, the child life volunteer came to the rescue and brought Kyson this bubble mower. It's the perfect motivator!!!



Today all of the nurses in the pod put together an easter egg hunt for all of the kiddos here. Again Kyson got to enjoy some easter egg hunting fun!



Today has been such a great day for Kyson. He has been so happy and dare I say his drainage has slowed down significantly this afternoon? I'm afraid to put that in big bold letters, but I'm hopeful. Wouldn't it be so amazing if we didn't have to go to the cath lab on Tuesday? I'm still very cautious but excited!!! Yay for a little bit of good news!!!

Day 10

When we were preparing ourselves for surgery all of the doctors I talked to said to plan on 7-10 days. I decided I should mentally prepare myself for the 10 days and then if it was sooner great! Well...it's day 10 and we are still here. I'll be honest and say that considering the circumstances I feel like I am doing pretty good. One of the hardest parts about getting to this day and still being here is not being able to be together as a family again. I don't have a lot of time to think about it as our days are pretty busy here with Kyson but when I do I really miss Jared and Caleb. I know Caleb is doing well, he hasn't seemed homesick yet and that makes missing him a lot easier. I am so grateful to my Mom for watching him for so long. I know he wouldn't be as happy anywhere else.

The hardest part is not being home for Jared right now. Every time midterms and finals have come around he has been really stressed but I was able to be there to support him and take care of him. Now I can't be and he is struggling with that. I try to do what I can from the hospital but there just isn't much I can do from here. I'm sure once this week is over we will both look back at it and be grateful we never have to do it again. For now, we will just take one day at a time and do the best we can.

Now as far as Kyson is concerned, he did really well yesterday and we are hoping for another good day today. We've had a few rough nights that I'm grateful are behind us. One of the worst nights was Wednesday night. He was supposed to get a PICC line all day and the IV team was so busy they never found time to come until 7:30PM. The next four hours were such a nightmare. He HATED being held down while the PICC line was placed and it was difficult to watch. I know I made the choice to stay and be there for Kyson but I felt like he needed me. Afterward it was really hard to get him settled down. As soon as we did, they had to get a chest x-ray to make sure it was placed correctly. Well, of course it wasn't. The IV team had to come back and try to flush it and get it fixed. This time I had to leave...I just couldn't do it again. He was so upset and so tired. Once they were done this time I came back and again I got him settled in. A little later they had to return for another x-ray. Again the x-ray revealed that the line was still going the wrong direction. By this time it was about midnight and I asked if they could just leave him alone and take care of it the next day. Poor Kyson. He was exhaused!!! On Thursday they came back again and fixed the PICC line the best they could...it still isn't in the ideal location but it's working so we are leaving it.

After having a really rough night Wednesday, Thursday turned into a hard day also. In rounds (where all the docs go to each child and decide the plan of action for the day) they told me they wanted to take Kyson to the cath lab the next day to make sure he was doing alright. I knew it was a necessary precaution but I was sad it had to happen. That day they also split Kyson's chest tubes and not too long after I started worrying about the coloring of one side. My suspicions were confirmed later that day that he has chylothorax (meaning he has chylous, which are fatty acids, seaping from his thoracic duct in his chest tube drainage). I was so heartbroken because I have known other kids who have had this complication and it is a hard road to go down. I'm still not sure what all this entails but I'm kind of ok with that. I'll just say that I know it is something that has the possiblity of keeping us here for weeks and once it presents itself it doesn't go away until the drainage completely stops and everything heals up inside. Sometimes the drainage will even stop and then once you introduce food it will present it's nasty self again. For now Kyson has to be on a very strict diet of only clear liquids (this seems to be working...hallelujah!!!) and if that doesn't work he won't be able to have anything by mouth at all until it clears up. Yikes!!!

Friday morning was cath lab morning. I was so grateful to hear that they couldn't find anything too concerning. Thoughts of having to go back to the operating table were crossing my mind and I was relieved that wasn't necessary. As soon as Kyson got back from the cath lab the six hr journey of keeping him flat on his back, left leg straight, with nothing to eat or drink besides clear liquids began. Kyson's nurse (she'd already been with Kyson twice and knew how feisty he can be:) looked at me when he got back, gave me a high five, and said, "here we go...we can do this!" It totally cracked me up when she said on her drive home that night she was so tired she didn't even have the energy to turn the radio on. Kyson likes to make sure all of his nurses work for their money!!!

After two very long days, I was so grateful for a good day Saturday. Kyson had a few visitors bring him new presents that kept him quite entertained all day. (THANK YOU!!!) He got a sponge bath, sat up so big in a chair for about an hour, and was pretty happy considering the circumstances. Over the last 36 hrs his chest tubes have been slowing down more and more. We are hopeful but you quickly learn in the hospital to not get your hopes up too high because the higher they are, the farther down they can crash.

Today I'm looking forward to a good day:) Kyson has so many new toys here, he won't have time to get bored! Also, my sister Katie is coming to sit with Kyson this afternoon so I can go home for just a couple hrs. I am really looking forward to it.

Last of all I have to add that my heart is so filled with graditude for each and every thing that has been done for us. Last night as I was falling asleep I was wishing there was a way that I could make sure each person knew how much it has meant to me. I try to get back to every phone call, text, or other message sent to me but it doesn't always happen. Please just know that it is appreciated!!!

I'll end with a few pictures from the last few days.

Kyson was SO excited to go on a wagon ride to see the trains...


With all the tubes and wires attached to Kyson it was quite a process but it was worth it. That is the only time Kyson has left his room in the last ten days (besides when he went for his heart cath but that doesn't count!)


Sitting up so big doing a puzzle. It's so good to see him getting back to normal.

Cath lab news

What an interesting day it has been. Kyson's heart cath took about 3 hrs. We were so grateful to hear that everything is looking good. The pressures in his lungs and where his fontan was done are a little high but nothing too extreme. For now we just play the waiting game some more in hopes that his chest tubes will stop draining. Now that they contain chylous (sp?) he can't have anything to eat or drink besides clear liquids (water, soda, popsicles, etc). I'm just praying so hard that the drainage will stop soon so we don't have to take more drastic measures. He's already been through SOOOO much, I would just be filled with so much graditude if the drainage slowed down and stopped soon. For now we would just ask that you continue to pray with us for these things.

For now, I need SLEEP so good night!!!

Update...8 days post-op

Like I said before I have doing updates on facebook. It's a little quicker and easier. If you want the quicker updates come and be my friend on facebook:)

Since my last post here Kyson has been struggling. They don't understand why he is draining so much so they decided to do a heart catheterization. They took him back for this about 7:30 this morning. We are all hoping for some answers.

Another concern is Kyson has developed a condition called chylothorax. I don't understand all of the implication of it, but I have followed other blog of heart kids who have had to deal with this and it isn't fun. We will find out more after the heart cath and I'll do another update later on if I get time today.

The good and the bad!

Overall I try to keep positive about how things are going with Kyson. It's just part of me...I'm an optimist. It makes going through trials like this easier because I am able to focus on the good.

Well, last night was one of those nights that was just HARD. Kyson is at his breaking point. Even when he was at his happiest yesterday, whenever someone would get near him he would plead, "Please, don't give me big owies!" Of course most of the time we could reassure him that there wouldn't be any owies but sometimes we couldn't. Last night he was completely exhausted but being in the hospital there are things that just can't be postponed until he is awake. He needed a Lovenox shot (a blood thinner that they say stings going in) and he needed a blood draw. Unfortunately his RA line would no longer draw blood back (still flushes thank goodness) so they had to do a finger prick. This was about 4:30 am and he was screaming MAD. As I helped hold him down for these things I saw all the fluid in his chest tubes and I realized that meant more days of this craziness. At that moment I felt overwhelmed and so sad. I don't want to hold my child down as he screams bloody murder anymore(I know I could leave the room but I have to be there for him). It's inevitable though, I know for sure he has to get a PICC line today since his RA line is not working correctly and it needs to be taken out. It's just part of being in the hospital.

Now I know this is the most I have gone into detail about the hard parts of being in the hospital. I also want to add some of the best parts about being here. First of all, there is a special spirit here. I know there are angels surrounding Kyson. I have had that reassurance many times. It is also amazing to feel all of the prayers that are being offered in your behalf. Until Kyson I didn't know what that felt like and I believe it is something everyone would be blessed to feel. Of course most of the time if you have a lot of people praying for you it's because you are going through a very difficult trial. I guess that's why we have trials...to gain testimonies of things like prayer. I have said this before, going through this is teaching me to be a better mother. It is teaching me about what is most important in life. Those are invaluable lessons to learn and I am grateful.

Two other things that are great about being here are the nurses and the amazing people I get to meet every day. Kyson has had many many nurses and the ones in the cardiac ICU are some of the very best. I absolutely love our nurse today...she's great with Kyson!
I've met several families here in the PICU going through some of the same things we have been through. I love sharing stories and being able to give encouragement and hope to others.

I'll end with a couple fun pictures.
Here he is snuggling with his bunny watching movies.

Another dog came to visit...this one is Tiger!

Highlights of Kyson's day

A couple of days ago my aunts sent Kyson a fruit arrangement. He loves fruit so it was great. In fact one of the first things I was ever able to get him to eat since surgery was a few grapes.


Today has been a great day for Kyson. He's been awake most of the day and he's actually been playing with a few toys and doing some fun activities. He is very easily agitated but I don't blame him one bit! To begin his day Kyson was visited by one of the hospital dogs name Raleigh. He just sat there at first but then he warmed up to the dog. After a little while the dog licked his hand and it must have tickled or something because gave us his first real big smile. It was wonderful to see again!!!








At lunch Uncle Reed and Aunt Melissa came by to visit Kyson and it was so fun to see them! They drove all the way from Prescott Valley to see him. SOOOO thoughtful of them!!! Kyson got a super cute bunny and an easter basket from them. He has been snuggling with that bunny all day and loves his easter eggs. He is on a very low fat diet so he can't eat all the candy in his basket (he got a couple and was in heaven:) but he loves opening them all up to see what's inside. He knows he will get to eat them when we get home and he seems very excited about that:)









This afternoon Ronald McDonald stopped by for a quick visit and picture.


Last of all my sister Christy stopped by and brought Kyson a Lightning Mcqueen balloon. He has been very entertained by it. He has been playing with it in his bed for quite a while. It is wonderful to see him have the energy to play with toys again.


Kyson's recovery is going really well overall. At first his heart was beating abnormally but the last 24 hours it has been in a normal rhythm which is wonderful! He is still draining a lot out of his chest tubes (more than is normal) so that is the biggest obstacle to get over. They did an echo this morning and everything looked good with that. In fact everything from his surgery looked good so there were no answers as to why he is draining so much. The leak in his tricuspid valve has definitely improved so that's great. Pretty much now we just sit and wait and see if Kyson's body just needs more time to adjust to the new blood flow. All in all we just feel very blessed with how everything has gone.

Thank you EVERYONE! We are surrounded by family and friends who love us and pray for us. There are many here in this PICU who don't the support we have and I feel so blessed by that. My sister asked today if I get bored here but I haven't hardly had a chance to get bored. We have had so many visitors and Kyson keeps me very busy. Thank you everyone!!!

A few more pictures

It's day 3, and Kyson is doing as good as can be expected. He is definitely giving his nurses a run for their money! He has let this entire PICU know that he has some amazing lungs:) His respitory therapists keep telling me that if he keeps screaming like that they won't have to worry about doing any treatments because he's opening up his lungs all on his own! I guess there is a positive side to the screaming! It's just Kyson though...he's always a screamer. Today he had to get a new IV (the two he had went "bad") and they ended up having to call the IV team to get one in. A little traumatic but he got through it!

Popsicles are great!


Look at me, sitting up in a chair for the first time post-op. So big!


My Mom brought Caleb to visit. Caleb did NOT enjoy it. He wouldn't even look at Kyson and starting crying when I tried to get him to say hi. I sat him down by him to try and take a picture and this is what I got...you can see the look on his face...he did not like it one bit!

I finally bribed him to kiss him on the cheek before he left. Good thing he went to Show Low with my Mom for the week. He will be much happier there!

Pictures

WARNING...I added some pictures at the bottom of this post of how Kyson looked post-op. They don't seem too bad to me because they are examples of what he truly looks like right now. I understand if you don't want to look at them though...I won't be insulted:)

Yesterday while waiting for Kyson's surgery to begin he had a great time playing around in the children's play area for pre-op. I have a few really cute pictures of him but I have them in a format this laptop won't read (forgot about that!) so I'll have to wait until I get home to be able to show them. Anyway, while Kyson was playing he slipped and fell and hit the corner of a table and got his first bruise of the day! Poor kid!


Well, here are two pictures of Kyson about an hour after we first saw him yesterday. I personally think he looks really good for just finishing an almost 8 hour surgery! Already extubated and not too much swelling. Much better than the first time we saw him after the first surgery!!!

On the road to recovery!

First of all, thank you everyone who is thinking of Kyson, praying for Kyson, and following his story. We have been showered with love and we are truly blessed. We know everything has gone so smoothly because there are people praying for Kyson everywhere!

Surgery is over!!! I'm so grateful to be able to say that. It has been a super long day but everything went well. I must say a huge thank you to my Mom, Natalie (and Dallas!), and Katie for keeping Jared and I company throughout this long day. My little brother Stephen also played with Caleb all day which was very helpful. I know so many others have done so much, I could go on and on thanking people. Just know that anything you have done is appreciated!

Dr. Pearl seemed happy with how everything went in surgery. It took a little while to get all the lines in so surgery lasted longer than planned but that's ok. The tricuspid repair went pretty good. Before surgery his leak was moderate and now it's mild to moderate. Not a huge change but it is better. The Fontan went well (for those who don't know they put in a conduit from the inferior vena cava to the pulmonary arteries). Dr. Pearl said his pulmonary veins are a little small but that's not abnormal for kiddos like him. This just meant he had to put in a little smaller conduit.

It took a long time to be able to come back and see him and they had already extubated him. When I got in here he said, "Mom, you took too long!" (I think he got pretty upset when he was extubated). He's also been asking me to snuggle him:) He's pretty thirsty and really wants a "big" cup of water. Of course it'll be a while before his stomach will tolerate anything. His chest tubes are still draining a large amount of blood so they will be watching that very closely to make sure that slows down significantly overnight.

Talking to his nurse, tomorrow will the hardest day as far as recovery is concerned. He will probably be in quite a bit of pain but they will try and keep it manageable.

Well, sorry it took me so long to get this posted. I started writing this post about two hours ago and Kyson keeps asking for me. I'm going to get this posted so I can give him my full attention:) Thanks again for EVERYTHING!!! I just can't say that enough! (oh and I promise to add some pictures when I have more time later) Good night!

Quick update on Kyson

I have been updating on Facebook but I wanted to let everyone who only follows my blog know that Kyson is doing well. He went in for surgery about 7:45. They put him on bypass about 9:30. About ten min ago they told us the surgeon was beginning the tricuspid repair. He should be done with surgery about 1:45-2:00. I will update when it is complete. Thank you everyone for all you have done for us.

Counting down

Well, the count down to surgery is turning into hours (about 36!) rather than days. Im almost done getting Caleb packed to go spend a week with my Mom. I need to pack for Kyson and I but my biggest hurdle is deciding what to bring. I've done this before, you would think I would know what to pack. Maybe I'm just having a hard time because it makes it more real...hospital life for at least a week...ugh!!! I'm grateful it is almost here though because that means it will be behind us sooner.

I've been trying to prepare Kyson at least a little bit with what is going to happen. If you ask him about it he will tell you he is having surgery and he is going to get big owies. I'm not sure what goes on in that little brain of his though because he doesn't seem concerned about it. I'm not sure what is better...knowing what is going to happen and being able to prepare for it (but also stress about it) or not really understaning anything and waking up in the worst pain you have ever known (or at least can remember). I have to be honest though, I think I've done enough stressing for the two of us:)

Well, I'm going to try and get some packing done and then I'm going to bed. Tomorrow is pre-op and Thursday we have to be at the hospital at 5:30am. Thank you for all the thoughts and prayers. We appreciate them and feel the strength they bring.

Big Burrell family:)

Remember a few months ago when I got to take pictures of my good friend Velika's family? Well, a few weeks ago I had the opportunity to take more pictures only this time we included the grandparents and cousins. Just thought I'd share a few of my favorites again.

I think they are the cutest Grandparents! (the Grandchildren aren't too bad either:)

Speaking of Grandparents, how about this one with Grandma and her Grandsons...

One of my favorites!

It's always fun to end the photoshoot with a "real life" picture. I told them all to kiss their spouses and who would have known

General Conference

In the church of Jesus Christ of Latter Day Saints we have General Conference twice a year where we have the opportunity to listen our apostles and prophet speak to us. This weekend has been such a weekend filled with amazing talks and spiritual upliftment. I had a few favorite talks that I wanted to share highlights from.

Saturday morning Kent F Richards spoke. He was a surgeon. He talked about a 13 yr old girl who underwent a 14 hour surgery for a tumor on her spinal cord. As she was waking in the ICU she started talking about all of the people that were in the room who were her deceased family members. She talked for about an hour about them and then fell asleep. When she woke she told her father, "Daddy, all of the children in the ICU have angels watching over them."

Of course I couldn't hold back the tears as I listened to this talk. I know without a doubt there were angels watching over Kyson in his previous two surgeries. It brings me great comfort to know that on Thursday when I have to hand him over to the nurse to take him away for surgery there will be angels with him when I can't be.

If you would like to watch this amazing talk click HERE.

Another absolute favorite was Richard G Scott's talk. He talked about family relationships. I loved the stories he told about his deceased wife and son. His son had a heart defect and when he would cry really hard his heart would race. This would cause him to throw up. One night he heard his son crying and went to take care of him. He said he held him very close as he changed him and changed his bedding. His son died just two months later and he will never forget that special night with him. He talked about how even though it was very difficult to lose his son there was comfort in knowing he had made covenants in the temple that would allow them to be together forever. I too am grateful for the covenants I have made that give me the peace and comfort of knowing that I will be with my family even after this life as long as I am worthy.

This talk was filled with so much wisdom...it was amazing. Click HERE to watch it.

I loved listening to conference. There were so many other talks that I loved but these two resonated with me as we approach Kyson's surgery. I am grateful for the spiritual upliftment that I received. If you get a minute, listen to them...you won't be disappointed!