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