[Kat-L]

My heart breaks for Cameron when I think that he's in pain. He's in my prayers.

[Stormster]

I hope your little guy feels better soon and you can all get some rest. He is where he has to be medically and you are where you have to be which is by his side supporting him with love.

Stay strong and keep up the great work. We are sending love and positive thoughts from our home in NY!

[sbaglio]

I'm so sorry to hear about what has been happening with Cameron. It seems neverending...but he is resiliant. He'll get through this. Think of the fact that he was extubated - I've cared for kids in the ICU who can never be extubated, and end up with a trach. I was wondering if perhaps the wean was done too quickly, but Fentanyl can usually be stopped rapidly without that much of a taper. I agree with EZ2Luv - his symptoms of diarrhea etc are all very consistent with withdrawal. The body is an amazing thing, and his will deal with this over time. It does take a few days for the symptoms to cease. That's not much comfort, I know, but it's something to look forward to.

Try not to think of his neighbour who passed away; that can color your impressions, although you obviously empathize. It sounds like Cameron is improving, and really, in the cardiac ICU, you take one day at a time, which I'm sure you've already learned. Also try not to surmise on what his next surgery will be like; that will be a different time, he will be older and stronger, and noone can know what his reaction will be then.

Wishing you the best. It helps us all to hear how he is doing, however he is doing. Hang in there, okay?

[linda512]

It does sound like withdrawal. You might ask about clonidine- it is used normally for blood pressure but can be used for and helps with withdrawal and is a little sedating (I work in a PICU).
GOod luck.

[Saya]

DDW, I just want you to know I'm thinking about you and sweet Cameron. He's an amazing little guy and you are an amazing mom. I'm so sorry he's going through this. (Hugs)

[Tigger2]

Oh DDW~ I am so sorry that little Cameron is having such a rough time. As always, your family is in my prayers. I wish there was more I could do. Take care of yourself!
Happy Mothers' Day!!!

[thanksgivingmom]

The warmest and sincerest of hugs to you, Cameron, and your family. You all will be in my thoughts and prayers.

[hesabanana]

I keep you and your family in my thoughts...

[Larue]

Keeping Cameron in my prayers and sending you hugs!!!!!

[devildogwife]

Thanks so much for the support everybody! The encouragement helped me get through yesterday. I appreciate you all helping me to see the positives.

Very thankfully, yesterday afternoon Cameron started to have longer moments of calm and rest. What a big relief! He even had moments where he just looked at us and seemed to listen to us talking to him. It was like having our happy baby back. He still has many times where he gets really uncomfortable and mad and will hold his breath and turn blue (even more so!), but we're getting there.

The next couple days will still be hard, but he's having longer moments in between where things aren't as bad. He's finally able to get some rest! Things are better! My is here again too, waiting to hear on his reassignment from HQ USMC in Quantico. It really helps to be able to give each other breaks.

[SuzBerg]

DDW - I am still praying for Cameron (and we will keep doing so). Today I thought of something our Cardio-Thoracic Surgeon told us when E was still in the hospital after her Fontan Revision last fall. (I looked up what I had written about it in my journal cuz I thought it might help you). I was upset because to me she didn't seem to be getting any better, she wouldn't eat, she wouldn't talk or smile or play, she just cried and wanted to stay in bed. The CT Surgeon said, "not to look at her progress from minute to minute but instead to look at it from day to day" (or in Cam's case maybe week to week). He was right, she was better that day than she had been the day before. He also said "she is getting better not sicker". Those word brought such comfort to me.

Cameron is off the vent - he is getting better. I wish there were something more I could say or do to help you. I hope today is a better day for both of you. Hugs - Suz

ETA: We posted at the same time, I'm glad to hear he's doing better. I tried to PM you but your box was full

[kelceesmom]

So glad to read that today is a better day for Cameron. That's all we can do is take it one day at a time.

[skilack]

Glad to hear it was a better day for C.

You and Hubby and C are still on our prayer list.

[sbaglio]

SO glad to hear that things are getting better!

[mommy3]

DDW - - I've followed your posts about your son and wanted to send my heartfelt thoughts to you as he begins to heal yet again. On this Mother's Day weekend, I wish you ALL much longer period of calm between Cameron's storms. My daughter's periodic meltdowns just haven't felt as much of a problem for me the past few days as I read your posts - - Hugs to you, susan