[devildogwife]

Well, after 40 days Cameron finally was extubated. He had to go off of 2 of his sedation drips (obviously) so he'd be awake enough to breath on his own. He's breathing on his own just fine. What he isn't doing at all is resting.

He has the worst withdrawal. I asked his nurse how this compared to a drug-exposed newborn. She said his is much much worse. Nothing calms him. He is getting hefty scheduled doses of methadone and ativan. He has PRN (as needed) morphine, IV ativan, chloral hydrate, motrin and tylenol. Nothing makes a dent. He has slept maybe 20 minutes at a time since yesterday afternoon. He has had this amazing tolerance for narcotics. He was weaned down from 10 and 10 of fentanyl and versed to 5/5 (and wide awake at that) before extubation. The amount he got would literally knock out an adult for days. But the thing is, at the time, he had to have it! He had 3 tubes going down his throat: an ND, NG and ET tube.

This is worse than all of his heart surgeries combined. I feel SO helpless. Nothing I can do comforts him. Even holding him, he's still in pain. It's not like we can walk the halls with him. He has 2 peripheral IV's and has a nasal canula. He has a fever, he has diarrhea, he has a literally constant almost screaming cry (but is completely hoarse because he was on the vent for almost 6 weeks), his heart rate is high, he's breathing fast, he just cannot rest because he feels so awful!

I feel completely HELPLESS. This is much worse than his withdrawal before. Endless crying and throwing his arms around. I wish I could take away his pain. This poor kiddo. Hopefully after another day of this ( I hope!!!), things will have settled down.

It has been so rough lately. Cameron's neighbor (another heart baby 8 weeks old) died yesterday. This baby was suffering so much, and his parents just had to let him go.

This is awful. And, we'll be going through it again in about a month after Cameron has his next open heart surgery. What I would give to take away his pain.....Thanks for listening to me vent. It is so hard to see your child in constant misery and not be able to do a thing about it.

[ourdreamcametru]

Bless his little heart. Our prayers are going up for each of you in hopes that the pain is soon gone and he is able to rest so he will be well again soon. Our prayers also go out to the family who lost their baby.

[Oceans]

((( Hugs )))) I wish I could more... Your family is always in my prayers

[EZ2Luv]

Poor baby. I know exactly what you are describing and it is heartbreaking. May I ask how long it has been since they started the methadone? Usually by the 3rd or 4th day the methadone is built up enough to give comfort, but where he had that constant drip I can see how this is happening. You don't have to answer this publicly ( you can PM me if you choose to) but was your DS prenatatally exposed to drugs(opiates) ? If that is the case his discomfort of withdrawl would be maginified. The good thing is he is in a controlled medical enviorment and they are able to monitor him. Your doing a wondeful job, you are such a good Mommy. From my experience , babies are alot more resliliant than we think even though it kills us to see them suffer. Give it another day or so and it should calm down. Just think of how he would have been in danger had he been thrashing around after the surgery. Hang in there, many of us a here praying for your baby and your famly.

Oh and all that you described (diarreah, fever, ect) are all part of withdrawl. Those should begin to subside within 72 hrs.

EZ

[mama_again]

My prayers are with Cameron have a sweet night tonight and praying for you as well.... I ask the Lord to send His angels of watch over him this evening and that he have sweet sleep and strength for a new day....

[Yash]

I'm praying for Cameron.

[specialk4b]

I'm sorry Cameron is having such a rought time. Sending prayers for this precious little guy!

[kelceesmom]

I hope things settle for Cameron. Our prayers are going up for your family. Take care of yourselves too.

[HappyHopefulMommy]

I wish I could take his pain away. That made me cry. I hope things quickly get much better, I am sorry for how hard this is, on both of you.

[crystalp]

Oh my goodness! Poor Cameron. I'm so sorry.

[Linny]

Ohhh DDW.....will keep you, your family and baby in prayer. I've been reading your 'signature' for awhile, wondering how things were going. I had no idea; and now that I do somewhat, will keep you on my prayer list.

I know the song of which you partially write on your signature as well. God hears each one of us and will keep Cameron close...as well as you. God grant you peace and some sleep.
Does the hospital not have some support people to help you deal with some of this too?
I wish there were more I could do (as others before me have written).
Vent away when you need to. We're here. (((((HUG)))))

Most Sincerely,

Linny

[inhiswill]

DDW- I pray for Cameron everyday. ((((hugs))))

[SuzBerg]

DDW - I too started to cry as I read your post. We will keep praying for Baby Cameron and you as well. I wish there were something more I could say or do to help. Hugs - Suz

[loveajax]

Oh, DDW, I am so sorry to hear this. I will keep you, Cameron and your family in my thoughts and prayers. I am seriously humbled by what a wonderful, wonderful mother you are. Happy Mom's Day to you, sweetie.

[Mommytinkerbell]

I'm praying for you all. Poor sweet baby.

Hugs, Selina