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.