Day 8 at CHOP

Let's see, what happened today...?

• All four children were with me here at the hospital. The boys needed to be with me here, but that has made it more stressful. But I love them and since I have been missing them so much I am happy they were here.



• One of Dillon's nurses came for a visit and spent some time with us, that was a blessing. It is always good to have visitors when you have been here this long.



• Dillon had his sweat test today - I had warned them he doesn't sweat and they were not able to get enough sweat to test



• Dillon has been upset all day and had a kind of bad day since he now has a BAD diaper rash.



• GI wants to do the J-tube but they feel it is reasonable to get a repeat milk scan and probe done when he is back to baseline so we can see what he is normally doing. I asked if he is always aspirating why has it been 2 years since we were here for an aspiration pneumonia. They don't know.



• I got to talk to a good friend on the phone for over an hour and be encouraged by her.



• Its been discouraging today. After 8 days in here I am exhausted, run down, still trying to remind myself to drink enough to be nursing Haddie and I am just tired. I really want to go home, I am glad they are saying we should be going on Friday. Not thrilled with decisions we need to make about the feeds and not thrilled that he will be going home on 3 antibiotics. But I just can't wait to get home.



• I had one friend ask me questions about my post yesterday in a very kind loving way to which I explained my reasons for not liking immunizations. I had another person leave me a comment that discouraged me more. But whenever someone does that it is neat to see how God used 3 other people to encourage me today. I am already emotionally tired from watching them have to prick Dillon and squeeze several mls of blood from his toes - twice today, pull his 2nd IV and place the 3rd, take the 5th or so blood draw, and talking to doctor after doctor after doctor. Trying to remember everything they are telling me, and trying to figure out the long term effects of the different things. I hope my blog isn't seen as negative and bringing people down. That is not the desire of my heart. I was, and still am, upset but I think any parent would be. I may need to clarify that I was not "shaking in anger" like this person thought, I was shaking and crying because I don't like to stand up to someone. I was scared what would happen because I told him to leave I didn't know if my Attending would be mad at me or not, but I knew I could not listen to him blame me for Dillon's bronchitis which has nothing to do with immunizations. I even asked a doctor today if he would have had that one would it of made a difference in him getting sick and he said no. I am so thankful for that friend who called me and just chatted, encouraged me to always be an advocate for my son, and talked about how God's has been working in her life recently to encourage me. I am thankful for the other people God brought into my life today to just encourage me to be Dillon's advocate. I say all this to say I really appreciate your prayers for me right now. It's been a long few days. My whole family is feeling the effects of it as Jay asked Daddy the other day "Did you have to be away from home a lot when you were a kid too? I don't want to be away, I just want to go home and be normal."



• We are going to sleep with the kids at a local hotel tonight so we will be close enough in case there is anything wrong with Dillon. I'm going crazy in this room! :o) But worse yet, I go crazy when I am not with him to make sure he is healthy and safe!