"Not flesh of my flesh, Nor bone of my bone, But still miraculously my own. Never forget for a single minute,
You didn't grow under my heart - but in it"

Wednesday, June 29, 2011

Our day at the ER

Yesterday was a great day with Noah. He ate, he walked he was doing amazing. Last night I saw something in him that had me concerned. I can't explain it I just knew he was gonna get sick. I took his temp, it was low grade 99. I gave him a bath because I didnt like the way the gtube looked. It was red, really red, looked bad. We cleaned him up real good and then he went to bed.

This morning I should have known it was going to be a long day. The 2 and 4 yr old started fighting and screaming very early. By 11am Noah still wasnt awake. I was nervous he had slept so long. When he came down his eyes were all glassy. He had noisy breathing and it seemed labored. He had a fever, I checked it...100. under the arm not high but still I knew something was not right with him. By 12 I had called Paul and told him that I think he needed to come home and take us to the ER.

I was worried. I was worried about Noah, but in all honesty I knew God would take care of him. I worried about what would happen at the hospital. I know people dont respect my right to choose not to vaccinate my kids and some especially doctors can get pretty brutal with me about it. I didnt want to go through that. Also it is a new hospital, not new but new to me because we just moved here. I was worried about Paul and the kids and what if we had to stay. It was all so unfamiliar and it made me uncomfortable.

Noahs legs were blue when we loaded him into the truck and by the time we reached the hospital they were bright red. He felt so hot. They took us right back. He had a fever of 101.8 and the breathing was worse. The doctor came in to look at him. She told us that he had croup. Croup...hmm that must have been what AJ caught over the weekend. Crap, was she ok? I didnt take her to the doctors and I felt awful about it. The doctor told me that AJ and most kids with croup handle it well. After all its just a virus she said. The reason Noah was so bad so fast was because of his Trisomy 8.

So the doctor did a breathing treatment but not albuteral, but a higher stronger thing in there. Then a steroid and tylenol via his gtube. Then we had to wait 2 hours after that treatment to see if he would be allowed to come home or if we would be there to stay for a bit. He slept on and off and would wake up gasping and then cry this cry that was so pitiful. Soon though he was doing better, some color came back and his breathing had quieted a little.

There was another issue. The issue of why his gtube was so red and seemed so sore. The ER doc told me I should make an appointment with the surgery dept and they can check it out. This is when being a mom of a SN child for over a year had kicked in. I told the doctor I saw no point in making an appointment when my son was right there in the hospital. I ask her to call surgery and get them down here to look at it. She had already said that the button seemed too small for him causing discomfort. The Er doc said she would try. When she came back she said that the PA for the surgeon said they could switch out the tube and she then did it for me. Yay!

All and all the visit went great. That was due only to the prayers pouring in for us. Thank you Lord for always being so faithful. Thank you friends and friends of friends for also being faithful and praying for my child. I pray you are all blessed beyond words. There was no mention or fight about the vaccines. The doctors had wisdom and were compassionate everyone there was. What I am upset about is that GI missed the fact that the mickey button was too small. How could she even have noticed the button since the whole visit took 3 minutes. His tube was red then too but not as bad as today. All she had to do is ask how long we had it and take an interest and then maybe my baby would not have been in pain on top of having an ear infection and croup. My poor boy. I will have to learn to forgive but in the forgiveness I will also get myself another GI doctor because my boy deserves better.

So for the next 10 days my weeman is on antibiotics for the ear infection. For the next four days he is on a steroid. And he is also on breathing treatments like 6x a day. Sigh. But you know what...I will do the dirty diapers, I will do the tube feeds, I will clean the nasty button, I will give the treatments, I will give the meds because it means my baby is here. My baby is alive. My baby is worth all the effort I have to give.

Be blessed


  1. Oh Thank GOD!!!!! Oh he is so precious!!! I am so glad he is okay!!! I am so proud of you for standing up to the ER doc and asking for surgery to take a look at Noah NOW!!! I PRAY he continues to get better!!! Poor sweet little love bug!!!!

  2. Oh sweet boy :(

    It brakes my heart to know that he isn't feeling well.
    I am praying for your angel as always. He is so special and precious, I'm always thinking of him :)

    Im also glad to know that someone else is concerned about vaccines!!

    I hope you have a good weekend and that Noah feels much better soon!

  3. Ok, you need to see a BAD gtube stoma! One covered in granular tissue and staph! LOL Ok, scratch that, you don't want or NEED to see that! Seriously though, when I saw Noah's stoma I was like, "Oh..well that looks pretty good!" The little bit of gunk around Noah's site was just drainage from his stomach. Yes, it can irritate the skin since it's acidic, but the skin around his stoma wasn't red. Angela's used to be BRIGHT red, in a circle all the way around the stoma, about 1.5 inches bigger in diameter than the head of the button. I wish I had pictures of it, but it was pre digital camera days. LOL And then the granular tissue. UGH! That stuff is AWFUL to deal with! Not only does it cause even more irritation, but that tissue weeps constantly. I had to always keep a gauze bandage around Angela's tube to soak up the constant drainage. Oh, the whole thing just brings back bad memories. It was good to get Noah's changed out though, because that too-small tube moving around so much could eventually cause the major skin irritation I mentioned above.