I Can't, I'm Not Wearing a Princess Dress! - New TR link!!!!

[vrajewski10513]

That face! He is absolutely adorable!!! I'm so happy to hear about all the great progress he has made. He's a little fighter!

 

[disneychristmasx3]

I keep checking for a new photo of that sweet little face. Hope he and your family are doing well

 

[afwdwfan]

Sorry for the lack of pictures. How about this one? I don't think I've shared it yet. This was taken last week when the nurse changed his feeding tube and took the nasal cannula off for a few minutes.

He's doing pretty well right now. We've had some setbacks with the feeding situation and weaning his narcotics. Right now he's doing great, but progress is coming very slowly.

 

[jedijill]

He's a handsome devil!

Jill in CO

 

[pkondz]

Good looking guy there Andy!
And slow progress is still progress. Hang in there!

 

[Captain_Oblivious]

Good looking guy!

Although I can't help but think of this:

 

[pkondz]

Although I can't help but think of this:

 

[cindianne320]

Such a sweetie!

 

[disneychristmasx3]

He looks great! So cute too!! Hopefully he will tolerate his feedings and be ready for discharge soon! Thanks for the picture

 

[GoofyFan1515]

Sorry for the lack of pictures. How about this one? I don't think I've shared it yet. This was taken last week when the nurse changed his feeding tube and took the nasal cannula off for a few minutes.

He's doing pretty well right now. We've had some setbacks with the feeding situation and weaning his narcotics. Right now he's doing great, but progress is coming very slowly.

He looks fantastic......and so alert!!!

Even slow progress...........is progress. You can't beat that!

 

[cajunfan]

Good looking guy!

Although I can't help but think of this:

Now that is hysterical!

Great picture of that baby! Thanks for sharing! And so glad to hear his at least progressing (even if it is slowly)

 

[franandaj]

He looks great! And just the fact that he is progressing is great news!

How are YOU holding up?

 

[Heidi Lou]

Yay for baby! He is absolutely precious. So happy for all the progress being made.

 

[vamassey1]

So Sweet! I bet it was nice to see him without all those tubes. I'm glad he continues to make more progress.

 

[Poolrat]

What a cutie!!!! Yes so alert and even with Mr. Burns hands.

Yes ANY progress is good. Don't forget to take of yourself too.

 

[afwdwfan]

And just like that things change...

We were going along smoothly and hit a bump in the road. The doctor yesterday noticed some signs of neurological issues. Specifically, as it would turn out, excess fluid in his brain.

It was caught early and they feel like it can be fixed with no real long term consequences to his well being. Which is good.

The fix will likely be putting in a shunt that drains to his stomach. He just had surgery on his diaphragm a little over 4 weeks ago. The surgeon who did that repair doesn't want that area disturbed for at least 6 weeks after surgery. No big deal... the pressure isn't extreme to the point that it needs emergency surgery to address it. They feel like they can wait. They know it is there and they can monitor it and even tap in at his soft spot to relieve pressure until surgery can be done if it builds to that point.

But...

The progress we've made to this point getting off the vent, weaning meds, weaning oxygen dependence. It will all go up in smoke when they put the shunt in. We were told today that he'll have to be sedated to the point that he'll need to go back on a vent. They also stopped weaning his pulmonary bp drug today that he had at least 2 more weeks of weaning on. The doctor said there's no point to continue because he'll likely need it to relieve any potential stresses during his surgery. Needless to say the last couple of days have been a kick in the gut.

I mean we feel good about them catching it and we feel confident it will be ok. But we were talking about some long term care options with the doctors that indicated that he might be able to go home within the next few weeks. Now we are going to be sitting around making no real progress for a couple of weeks only to pick back up where we were a few weeks ago.

I guess the one bright spot would be that this didn't just happen overnight. This was likely building up and contributing to some of the difficulties we'd been having the past few days of weaning his meds and getting him to eat. Fixing this might make that part easier. But either way we aren't going home anytime soon.

 

[vrajewski10513]

Ugh, poor baby Atleast the neuro issue was caught while you guys are still at the hospital, and the MD doesn't seem to think it will have long term effects.

I can't even imagine how your feeling. To go from getting ready to take the baby home then getting that news, my heart breaks for you guys. You just gotta try and stay positive. He was doing so well with his progression this far one can only hope for the same going forward.

I will keep your little guy, and your whole family in my prayers. Keep hangin' in there.

 

[cajunfan]

Awww. I am so sorry to hear of the latest difficulties. Hang in there and know he has some prayers and pixie dust coming his way!

 

[karly101]

Just wanted to let you know I have enjoyed reading your whole trip report and saddened to hear of your family's recent struggles. My cousins baby was born with CDH and I understand a little of the roller coaster you face. These kids are tough though - their little one is 5 now and I'm amazed by her resilience! Sending my thoughts to you and all your family.

 

[pkondz]

It was caught early and they feel like it can be fixed with no real long term consequences to his well being. Which is good.

Focus on that.

The progress we've made to this point getting off the vent, weaning meds, weaning oxygen dependence. It will all go up in smoke when they put the shunt in. We were told today that he'll have to be sedated to the point that he'll need to go back on a vent. They also stopped weaning his pulmonary bp drug today that he had at least 2 more weeks of weaning on. The doctor said there's no point to continue because he'll likely need it to relieve any potential stresses during his surgery. Needless to say the last couple of days have been a kick in the gut.

This is really rough. Keeping you guys in my thoughts.