Sweet Hatcher

Hatcher just woke up, it's about 11 pm and he had to get an NG feed started. He asked for a drink so sweetly and I tucked him in again with his puppy blanket. I tickled his head for a minute, kissed his nose and asked him if he needed anything. "yep, just watch me sleep." Oh how I am in love with this little boy! I went home to shower and do some laundry this morning. I had about 20 min till I needed to put the clothes in the dryer so I thought I would do some stretches and deep breathing. The next thing I knew was that is was 3pm! I never can go to sleep like that, let alone on the carpet, but I guess I'm exhausted! Randy is so good to be so involved and didn't even miss me. Hatcher had a good day, was able to ween down his oxygen and if you can believe it he has been on room air since 12:30pm! His sats have been good, running about 94 all day! I feel better about things today. Yesterday was overwhelming learning about plastic bronchitis. This is what they think he has. The final diagnosis won't come back till Monday from the lab, but the team is confident that is most likely what it is. It is not contagious and there is no cure for it. It is very rare but sometimes can happen after the fontan. We will just have to learn to manage it. We are learning how to use a nebulizer with 4 different medications he needs daily 2 times. There are cases that ultimately lead to respiratory failure but there are some that seem to pop up and then go away. Having both hypo plastic left heart syndrome and plastic bronchitis is almost too much for me to even think about. You can't even make up stuff like this! The plastic bronchitis forms in the bronchial and Hatcher's looked very string cheese like. It is not detectable on an x-ray and is hard to get out. Randy keeps telling me, just wait till Monday... it's out of our hands. I am grateful for his positve attitude. I cried tonight watching him have to do so many things a 3 year old or anyone should have to endure. One of my best friends Kenz, her sister Sadie (we actually went to Ricks together) has a little fighter of her own. I was on her blog and came across this conference talk below. I think she may have posted that just for me, thank you Sadie, it brought so much peace today. I do have to say that when Hatcher came back from the cath lab and was coming out of sedation he looked up and said, "hey guys, come down here." Randy and I both looked at each other comforted by the fact that he has angels watching over him. Hatcher, I pray that dad and I will be able to make the best decisions for you and that your team of doctors will know what to do. I'm so grateful for everyday I have with you even if its in your hospital bed snuggling because you don't feel good. I love the smell of your hair, the way you go ahhh after a drink of pop, that you hate wearing diapers in the hospital, that we get to keel by your bed at night and hold hands in prayer, that you miss Jaxyn, and that no matter what question a doctor or nurse asks you the answer is always no. I love you, sweet dreams.