The hospital

Top then things that I won't miss about living in the hospital:
10. Living out of a suitcase for over a month with no where to really put my things.
9. Having very little privacy. Especially when I just needed somewhere to cry. I didn't like crying in front of the nurses. I had one nurse who kept telling me, "You know it could be worse." I have to say that's not what you want to hear when you are heartbroken for your child.
8. Having to ask a nurse for all of Kyson's needs. Especially when it came to pain meds that I knew he needed!
7. Having to push a button in order to have someone let me into the PICU. It just got old.
6. No way to exercise. I was in such good shape before his surgery. I haven't exercised once since and I'm feeling it! Ugh!!!
5. Middle of the night medications, labs, or chest x-rays. Especially the 4AM chest x-ray...
4. Hospital couch turned into bed for me. Not comfortable!
3. Public bathrooms and showers. YUCK!
2. Being away from my husband and Caleb. If you are at home with all of your family under one roof, be grateful!!!
1. Watching Kyson go through endless procedures. The fear in his eyes and the tears rolling down his cheeks were so hard to watch. The worst should be over and I am grateful!

Top then things I WILL miss about living in the hospital.
10. The dogs that come almost every day. Kyson loved them (most of the time:)
9. Friends coming to visit us. Thank you to everyone who took the time to do that!
8. No chores! I would rather be home to be able to do them, but if I have to be here, it's nice not having to clean much. I have a lot to do when I get home now!!!
7. Spending so much one-on-one time with Kyson. The last two weeks as Kyson has started feeling better we have spent a lot of time playing games, doing puzzles, reading books, blowing bubbles, and whatever else we could come up with!
6. There is an amazing feeling here. I'm sure there were angels watching over Kyson especially on his hardest days and I could feel their presence. AMAZING!
5. A little bit of pampering. Twice I got to go have a back massage and hand massage. Let me tell you what...I am so tense! Both times they kept telling me to relax and I was as relaxed as I could get!
4. The child life specialists. Jennifer in particular. She is so great with the kids. She does an amazing job.
3. The friends I made while being here. I'm sure I will see some of them again. It was so nice to have other Mom's to talk to here!
2. There are a few doctors I will really miss. Dr. Menon is one in particular who loved Kyson and was so good with him despite how onery he could be.
1. Over the past month Kyson had so many nurses! Most of them I LOVED and I am so grateful for all they did for Kyson.

And now I want to thank each and every person who reads this. Thank you for your prayers. Thank you for your love. Thank you for your support. We couldn't have gotten through this without YOU!

Guess what?

After one month and four days of living here...

Tomorrow (Wednesday) we are going HOME!!!

By the way, in the morning Kyson will be getting a smaller chest tube put in. I was hoping to avoid this but really it's ok. I'm just so grateful to be going home with Kyson! Having a chest tube at home means our journey isn't over yet, but at least we can do this last part from the comfort of our own home.

Four weeks and counting...

I really should be better about updating my blog...facebook is just too easy! I have so many pictures I need to upload. I just read my last post and decided I should do a quick update here. Kyson has done really well the last few days. His chest tube drainage has slowed down considerably and they have allowed him to start eating and drinking again. He is on a 10 fat gram diet so there aren't too many options that he really likes so it's been a bit of a struggle to get him to eat. We are getting there though!

The greatest blessing about all of this is he more than likely (unless he surprisingly starts draining a lot more again) will NOT have to go back for surgery again. I am SOOOOOOO grateful for that! He has been so much happier lately and seems to be moving around pretty well. It's been four weeks since his surgery so his chest is pretty much healed up. Only two more weeks until we can pick him up under his arms again.

I don't want to jinx us but I'm pretty sure we will be able to leave sometime next week. Dr. Pearl is willing to send patients home with chest tubes (some surgeons don't ever do this) so we might go home with one. I'm not sure how I feel about that...makes me really nervous to be honest...but I want to go home!!! We need to be a family again.

Every day of being in the hospital is a humbling experience. Today I just met a family whose baby is only two weeks old and has to have a heart transplant. Something went wrong during her surgery (human error) and now she is on ECMO (for those that don't know that is similar to a bypass machine with a few small differences and is only for the sickest of kids). I can't even imagine being in their shoes. Isn't it crazy that there is always someone who has it worse off than you do?

I am grateful for this experience and the way it has changed me. My perspective on life has changed. I am a better person. It is humbling to think about how many people are thinking about and praying for Kyson. Miracles are bound to happen when so many prayers are headed his way. This week we have definitely experienced a miracle as we have seen his drainage slow down so he won't have to have another surgery. My heart is filled with graditude because of this. I just can't wait to go home and be a family again...