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

[FantasiaMagic]

Hey Andy, just catching up now. Congrats on you're newborn son. I am glad his surgery went well and will continue sending good thoughts for him!

 

[MissMaryQC]

I'm so glad to see your son is doing so well. I hope is great progress continues. My thoughts are with you and your family.

 

[dalmatian7]

Lurker here but just wanted to check in and say congratulations on a beautiful little guy. His color is great. My DH and I farm along with our full time jobs so I hope you have some help to alleviate those concerns so you guys can focus on the little guy. Best wishes to everyone.

 

[afwdwfan]

Thank you all for the well wishes. It really does mean a lot. I know I haven't been a very active participant around here aside from my quick updates from the hospital.

DW and I are both doing fine. Honestly the hardest part was at 1:00 am the morning after he was born when we were told he wasn't responding well and needed ECMO and then later that morning when we saw him hooked up for the first time.

But the staff has been absolutely fantastic and quickly made us feel at ease. We've been able to have the serious talks that we've needed to have as well as just talk about random fun things. Now that we're off ECMO, we have a different staff of nurses tending to us, but a few of our ECMO nurses still come by the room to visit before or after shifts. Maybe even during a shift if things are slow. Forming some quick friendships like that has really made things a lot easier. We know he's in good hands with some great people caring for him.

At home we've had plenty of help with day to day things and the other kids. So we've really just been staying close to the hospital without having to worry about much anything else.

Now that things are a little bit more calm and stable we might spend a few nights at home this weekend and do some things with the other kids. I'm sure we'll at least spend part of every day here though.

He really does look good right now. Actually looks like a normal baby again. They're trying to wean him off morphine now which could be a long process. He was at the point that they could give him a dose and it hardly had any impact. They've been giving him some other drugs to help with weaning and he's been out cold all day. Limp as a wet noodle.

They're also in the process of weaning him off nitric oxide. The vent has been changed multiple times today because we fought some issues with CO2, pulse rate and sats that we seem to be past now. It was an interesting night/ morning. They almost had to put him back on an oscillating ventilator this morning.

Not sure what the right lung size is. They're happy with it but I haven't been told a volume or anything. Still trying to figure out function. Fighting high pulmonary bp and still getting mucus out. The surgeon said there is some left lung in there too but it was collapsed when he was in there and it is obviously deformed. X-rays since surgery are showing more than just air so they think there is some blood and mucus moving in there which could be a good sign. I guess we'll have to see going forward.

 

[disneychristmasx3]

Thank you all for the well wishes. It really does mean a lot. I know I haven't been a very active participant around here aside from my quick updates from the hospital.

DW and I are both doing fine. Honestly the hardest part was at 1:00 am the morning after he was born when we were told he wasn't responding well and needed ECMO and then later that morning when we saw him hooked up for the first time.

But the staff has been absolutely fantastic and quickly made us feel at ease. We've been able to have the serious talks that we've needed to have as well as just talk about random fun things. Now that we're off ECMO, we have a fifteenth staff of nurses tending to us, but a few of our ECMO nurses still come by the room to visit before or after shifts. Maybe even during a shift if things are slow. Forming some quick friendships like that has really made things a lot easier. We know he's in good hands with some great people caring for him.

At home we've had plenty of help with day to day things and the other kids. So we've really just been staying close to the hospital without having to worry about much anything else.

Now that things are a little bit more calm and stable we might spend a few nights at home this weekend and do some things with the other kids. I'm sure we'll at least spend part of every day here though.

He really does look good right now. Actually looks like a normal baby again. They're trying to wean him off morphine now which could be a long process. He was at the point that they could give him a dose and it hardly had any impact. They've been giving him some other dogs to help with weaning and he's been out cold all day. Limp as a wet noodle.

They're also in the process of weaning him off nitric oxide. The vent has been changed multiple times today because we fought some issues with CO2, pulse rate and sats that we seem to be past now. It was an interesting night/ morning. They almost had to put him back on an oscillating ventilator this morning.

Not sure what the right lung size is. They're happy with it but I haven't been told a volume or anything. Still trying to figure out function. Fighting high pulmonary bp and still getting mucus out. The surgeon said there is some left lung in there too but it was collapsed when he was in there and it is obviously deformed. X-rays since surgery are showing more than just air so they think there is some blood and mucus moving in there which could be a good sign. I guess we'll have to see going forward.

Thanks for the detailed update. All of these hurdles are somewhat expected. A month +\- from now you will be worrying about trying to get him to suck from a bottle or the breast. Sounds like a dream problem right now but when it comes its BIG!! Just know he is crossing the hurdles like a champ. And will cross them all on his own time. Thanks for sharing him and your journey with us

 

[pkondz]

Honestly the hardest part was at 1:00 am the morning after he was born when we were told he wasn't responding well and needed ECMO and then later that morning when we saw him hooked up for the first time.

Now that we're off ECMO, we have a different staff of nurses tending to us, but a few of our ECMO nurses still come by the room to visit before or after shifts.

Wow, that's really nice.
I'm impressed.

At home we've had plenty of help with day to day things and the other kids.

Thank God for that.

Now that things are a little bit more calm and stable we might spend a few nights at home this weekend and do some things with the other kids.

That'll be nice. I'm sure the whole family will enjoy that.
Relax. Have some fun. Just be together.

He was at the point that they could give him a dose and it hardly had any impact.

Wow.
Just... wow.

They've been giving him some other drugs to help with weaning and he's been out cold all day. Limp as a wet noodle.

Awww.... poor little guy.

Not sure what the right lung size is. They're happy with it but I haven't been told a volume or anything. Still trying to figure out function. Fighting high pulmonary bp and still getting mucus out. The surgeon said there is some left lung in there too but it was collapsed when he was in there and it is obviously deformed. X-rays since surgery are showing more than just air so they think there is some blood and mucus moving in there which could be a good sign. I guess we'll have to see going forward.

So... overwhelming. I don't know how you guys are doing it.

Awwwwww....
Where did the baseball slippers come from??

 

[DISNEYMOON10121991]

Thanks for the update!
He looks good! A cutie with his Mickey and Goofy pals. Those will be treasured items for him.
Sounds like you have a strong little fighter there who will take the steps one at a time.
So glad you have great help at home and at the hospital. Hope you get some nice family time and some rest at home this weekend.
Wishing the best for all of you : )

 

[vamassey1]

So glad to hear he's doing better. He really does look good. More prayers for his continued recovery and for your family. Love his Mickey!

 

[Steppesister]

Hey Andy,

Great to hear it's still steady progress and small victories along the way. From the sound of it, his progress and challenges are on an expected curve. Praying it continues to be on an upward trend and before you know it, he'll be headed home.

 

[dalmatian7]

So glad to hear you have such a great support network! Best wishes for further progress for little man and for strength for you and your wife. Enjoy some family time.

 

[KnK]

Catching up Andy. Beautiful new son. Prayers and support headed your way.

 

[Poolrat]

So glad to hear all the good news. He really seems to be doing well and holding his own. A fighter indeed. Prayers for continued success and good health.

 

[Ndusmama]

Want to go back and read more

 

[afwdwfan]

Well things have certainly escalated quickly. And in a good way.

We were told with about an hours notice this morning that they were ready to move us back over to the NICU which is a positive step for us... a little bit less critical Tham being in PICU.

Once there we were told that they'd probably just let him rest and adjust for a day or so and not make any changes.

A few hours later they're decreasing his morphine drip and telling us if he has 2 more good blood gas readings they might just extubate him tomorrow. Never in my wildest dreams did I see that coming so quickly. He'll definitely still need oxygen but it would be nice to see that big tube that he keeps gagging on go away.

A very busy day for us but a lot of good news!

 

[disneychristmasx3]

Well things have certainly escalated quickly. And in a good way.

We were told with about an hours notice this morning that they were ready to move us back over to the NICU which is a positive step for us... a little bit less critical Tham being in PICU.

Once there we were told that they'd probably just let him rest and adjust for a day or so and not make any changes.

A few hours later they're decreasing his morphine drip and telling us if he has 2 more good blood gas readings they might just extubate him tomorrow. Never in my wildest dreams did I see that coming so quickly. He'll definitely still need oxygen but it would be nice to see that big tube that he keeps gagging on go away.

A very busy day for us but a lot of good news!

Great progress! Hope he passes this test on the first try!

 

[GoofyFan1515]

Great news Andy!



Thoughts and prayers that things continue to improve at an accelerated pace!

 

[glennbo123]

That's great Andy!

 

[SarahDisney]

Awesome news! I hope he continues to improve quickly!

 

[vamassey1]

Fabulous New! Prayers are working.

 

[afwdwfan]

Hey! Look who's off the vent!

Getting air delivered to his nose through a vapotherm. It heats air to body temp and adds moisture to it so that they can force a good volume without causing a lot of discomfort. He still needs a lot of help but at least it isn't a tube shoved down his throat anymore.