Day 6...

Well, we're going on day 6 here. I'm up and ready for the day early- I couldn't get back to sleep after they sucked him out and did his treatment at 5 am this morning. It's been kind of nice to have a little bit of quiet time to myself this morning. Brett has to put in some time at work this morning and then will be in and out the rest of the day transporting Aidan around and being here. I've been more on my own the last couple days and its been a bit lonely but I usually have some time with Brett in the afternoon and then my mom has come after work. Plus a couple friends to fill in the gaps so it hasn't been too bad.

Ethan has had some improvements and set backs the last couple days but I feel like overall he is improving. He is working so hard and is just exhausted and can't be left alone long enough to just really sleep. I've not been letting the nurses have at him this morning. Let the poor child sleep for more than a couple hours. On Tuesday, as they were preparing the room to put the feeding tube in and re-insert the i.v., he perked up and decided he wanted to eat. He ate quite a bit of spaghetti and grapes and then stayed awake for a couple hours and really played with us. It felt so good to see him smile and have some energy after watching him sleep for a day and a half prior to that. After the 2 hours he was exhausted and slept the rest of the evening and night. The good thing that did was buy us some time on the feeding tube and because the i.v. was already out (his vein tired out and pushed it out) they decided to let us see how he did without it since he had so much fluid on reserve.

Yesterday morning he woke up and was really alert and the thought occurred to me that he might be more willing to eat if he had a high chair and could do it himself. They brought one in for me and he was interested right away, sat down and ate a great breakfast and almost a whole sippy cup of chocolate milk. The doctor said his lungs had improved a lot since the day before and I was really encouraged. Then the rest of the day went up and down and while he had a good afternoon (he played, and laughed, and we even got to leave the room and go for a walk- they had a cute wagon we pulled him in), he also didn't sleep well, his lungs didn't sound good the rest of the day and his diapers started to dry up again without the iv so they had to put it in again last night. He also didn't eat again although he really liked drinking out of my mom's water bottle and we did get a few ounces of water in him. Not to mention that while he isn't on a lot of oxygen, he can't seem to get off of it. He just looked beat up by the end of the day and I hit my point. The nurse was filling me full of orange juice just trying to get me to perk up and while it tasted good, I think it mostly just got the tears flowing.

I'm just so tired of seeing him miserable and I'm so tired myself. I also haven't seen Aidan in over 2 days because Tuesday he had the stomach flu and we can't have any sick people here. Brett is going to get him today after work and bring him over to spend some time with us before he gets shipped off to the next person to watch him. He's been a good sport and has enjoyed playing with all his friends but I know he is wearing out too and just wants to be home, like the rest of us. I'm sorry to complain. When it comes down to it I just want Ethan to be healthy and feel well and all my family to be together at home. I hope that today we will see some stronger improvements now that he seems to be more willing to get up and play. I have some cute pictures but I'll have to post them later.

Thank you for all of your prayers and support. I know that you are thinking of us and I appreciate your kind comments. We have such wonderful family and friends and we love you all.