Monday, November 29, 2010

It continues...

I am going to try to be fast. I feel like all my last posts have been about Camden's retching. I have lost track of time with it. I am always wondering if it is an allergy (since milk made him that sick!) and I do a rotation diet over ...and over again for months. It has been going on for a really long time but then a few days before Thanksgiving it got really bad. He couldnt sit up from being so worn out. He sometimes retched 3 times an hour. He retched through the night with an empty stomach. I just didn't have the heart to put him on his continuous feed at night. He was down to 3 feeds a day at THREE hrs per feed...STILL retching. This really bad phase last about 4 days and I even took him in the ER scared for him. I am not going to get into on here because I dont think it is the right place to do so but after driving 2 hrs and waiting their words were, "we have nothing to offer you" and " he looks fine on daddy's lap and he isnt in any resp distress"I cried and cried. They finally gave me an xray which turned out ok.

I took him home and I cant remember the last time I was so hurt and upset. (Like I said there were other things said to me.) He had another rough day then the next night he had the hugest bowel movement and was so much better...? Yesterday, he was great and back to himself then last night he retched worse than Ive ever seen. There is something wrong. If I hear someone tell me it is a flu again, Im going to scream. Or that Ive skipped speech therapy for two mths, or that I havent tried a new med my surgeon offered me to try....(I want to find out why he needs the med first. ) And no, not one of my family members have been sick with a bug & and has skipped speech because we moved and I was giving the kids a break with all the retching.

He also sometimes make a popping sound when he retches which scares me too. I think he needs a CT. I have found several cdh babies that had reherniated and were even in the hospital due to being so sick and the xray looks clear so they dont think reherniation. Finally a CT is done and there is a stomach up in the chest cavity. I am not saying he has reherniated, but just to rule it out....?

I know he is in pain. Even yesterday when he was doing very well he didnt want me or my mom. Hasnt really wanted to come to us for days. This is strange...he absolutely loves his Nana. She thinks it is because he is mad we havent made him better. :( I dont know. He is very irritable and you can tell he tries so hard to play but something is bothering him.

So here we are today and as I have typed this he has retched with half his feed going in him at a slow rate, and he wants to lay down. He just got up after sleeping 12 hours. Something is wrong. I keep thinking I am going crazy. Im so glad we live near my parents so they can see it. I am so glad my BF was here during Thanksgiving week and witnessed it. If everthing was ruled out and I knew this was going to be his life, and there was no fixing it, I would deal. But I dont think that is the case.

So, I had Camden's ped give him a referral to go see Dr Kays in Gainsville. Waiting on them to call me with an appointment. I am hoping we can look into different things and I am looking forward to meeting him. He deals with crazy CDH moms all the time, so Im sure he has seen and heard it all. ;o)

I have to go day by day and count my blessings. (Dont get me wrong, when I was on the side of the road for two hrs with a flat on the way to the ER ....watching my baby have 3 horrible retching episodes I had a pity party.) I have to continue to keep looking at things with the new perspective Camden has taught me. I have to ask for forgiveness for being ungrateful and thank God my baby is here. Everything's going to be ok.

5 comments:

  1. Nothing is worse than knowing in your heart that something is wrong and having your worries brushed aside as if they are nothing! Please know that you and Camden are in our thoughts and prayers and are hoping for answers soon. We have heard great things about Dr Kays! Stay strong!

    Much love and prayers,
    Patty D'Angelo
    mom to Charlie, 2/4/09, LCDH survivor

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  2. It is awful to see your child in pain or discomfort. I am praying for answers for you guys in your continued advocacy so that poor Camden can be a kid again.

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  3. God gives us mom's that 6th sense. Stay with it Devon. You're a great mom and you are his advocate!! It was so good to get to visit with you... even if you were dressed in cammo!!!! ha ha

    LOVE YOU!!!!!!!!!

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  4. PLEASE get a CT. Sometimes doctors just don't see reherniation until they cut the kids open. THIS is what happened to my Ava at 2 years old. Us Moms are given a sixth sense by God to help our kids survive. I'll be praying. He needs relief now. Fight fight fight for his advocacy.

    ~Terri
    http://avaslifewithcdh.blogspot.com

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  5. I am so sorry things are not going well right now. I can only imagine the frustration and agony, for both Camden and you. Please know that I am praying for you always. I hope and pray you find an answer to this quick. Hugs...

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