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.

Saturday, November 13, 2010

Camden in November

Hi All. =0)

I havent been able to log in due to some computer problems, but there isnt much going on. Camden is growing and starting to babble more and more. Words are soon to come. Still a lot of closed mouth humming.

We did go see his surgeon, Dr W, and she IS leaving. I am so saddend, but wish her the best. It was so hard to hear her actually say it. WE LOVE HER! We are now thinking about going to Gainesville to see Dr kays, and it is actually closer to us now that we have moved. If you are a CDH mom, you know who he is, but for the others he is a DR that specializes in CDH kids. With DR W leaving we are thinking we need to get established with someone else and she is going to be hard to replace. We think he will be the next best thing! ;o)

Camden is gaining ok, but the retching has increased to where it is a struggle to feed him. He is back on the pump and it seems like he lives with the Infinity back pack on. I have done rotation and food allergies arent seeming to be the problem. (besides the milk and soy of course) I am going to continue rotating his food so we dont acquire another allergy, but the retching situation is something else. And no one knows....not even me. I know it is just how he is working...due to surgeries? But what exactly? So I am going to try to stop dwelling on it and trying to figure it all out. I have to put it in God's hands, but it is so hard to watch your baby dry heave through out the day. He still does not want to eat, but did put a grain or two of rice in his mouth. Just depends on his mood, but two grains of rice just isnt gonna cut it! ;o)

AMAZINGLY our private insurance decide to cover Camden's RSV shot for this winter! We were in shock as this shot is outrageously expensive and usually they give you a fit when your Dr orders one. We are heading to Jacksonville Tuesday to get it and maybe a few others while there. We also will meet with his RT from his medical supply company. They kept us with them knowing that Id be in and out of Jax which was nice.

Just trying to stay healthy through the flu season. Our new church is super tiny, so that is good for us these days. =0)

I continue to thank Jesus for Camden's life...daily. He is so precious and has the funniest personality on him! Pictures and hopefully a video to come. Take care all....and thanks for checking in on us.