Urgent Prayers for 4-Month-Old Baby

CelticGrace

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Finn had an uneventful night so there was no news 'til rounds :)
We just had rounds and we aren't going to change anything for the next few days and just focus on getting Finn to eat more and then we can go from there. Finn has shown that he doesn't like to be rushed with anything and that we need to take our time when we make any changes. Can't rush perfection!!

Haven't seen any updates on Clover other than she's resting and recovering :)
 
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CelticGrace

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nightly update:
Tina is back and Finn is already eating better bc they have their own little routine Finn is now in his wagon watching the movie Cars and snuggling lamby. Hopefully, he eats and sleeps well tonight! If you see those random bald spots on his head, it's where the nurses need to shave him to get IVs but it's starting to grow back. We took a break from X-ray today and might tomorrow too but we will for sure get labs again. Thank goodness for this wagon!!!
Tina is one of his team of nurses
 
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Pink Spider

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Continuing to pray!
 
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CelticGrace

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Morning (almost noon lol) update:
Finn was doing great taking 2oz at a time for Tina and then spit everything up. But he got a nice bath and then some snuggles and is now asleep. Hopefully, the plan will be like yesterday and we can only work on eating. Now that I have been moved to the end of the hall, the doctors don't get to me to round until around 12. More updates soon!!!

Also, Clover is 7 months old today! A mini update from her too :)
Clover still has a big recovery ahead of her, but is doing really well despite such a huge surgery. We also have 2 rounds of chemo a month or so from now.

And...

Our surgeon, with tears in his eyes, informed us we got our "grand slam"....they got it ALL. NEGATIVE MARGINS...it was almost entirely "dead" tissue except for at the center. Her liver is also functioning very well.
 
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CelticGrace

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Just had rounds and the echo was perfect So happy we can take that off the table. He still pants a lot so we are going to stay on this high lasix dose through the weekend and if there are still no improvements we MAY consult a pulmonary doctor on Tuesday. Wether we do that or not, if he does well through the weekend, we may wean the oxygen a little to see what happens. If we are down to just oxygen, wether the weaning goes well or not, we MAY be able to come home but he would be on oxygen. So the weekend goal will be to keep eating!
 
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CelticGrace

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Morning all. Well, I am so sorry to report this but Finn is going in for surgery TODAY. His eating had become less and less so they did a chest X-ray this morning and overnight, basically, the chyle effusions have come back with full force. The ultrasound was just completed to confirm that all of the fluid is chyle and this is the way it's looking but we will know for sure once cardiology reads it.

We are holding his feeds and snuggling as much as possible before the procedure. We aren't sure if they will do a PICC line too but he will for sure get an IV. Jimmy will be the one doing the procedure and he has already put 2 chest tubes in Finn so he is the BEST one for the job!!! Even though it's a Sunday and a holiday weekend, somehow, he is still surrounded by the best team!

Daddy and big brother Mason are on the way so we will all be here to support him. I will update you all as soon as I get more info and timing. You would NEVER know he is having trouble because he has been smiling and laughing all day. He is SUCH a little trooper and I am so proud of him!!!
 
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servant of Merciful Love

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Just had rounds and the echo was perfect So happy we can take that off the table. He still pants a lot so we are going to stay on this high lasix dose through the weekend and if there are still no improvements we MAY consult a pulmonary doctor on Tuesday. Wether we do that or not, if he does well through the weekend, we may wean the oxygen a little to see what happens. If we are down to just oxygen, wether the weaning goes well or not, we MAY be able to come home but he would be on oxygen. So the weekend goal will be to keep eating!Morning all.

Well, I am so sorry to report this but Finn is going in for surgery TODAY. His eating had become less and less so they did a chest X-ray this morning and overnight, basically, the chyle effusions have come back with full force. The ultrasound was just completed to confirm that all of the fluid is chyle and this is the way it's looking but we will know for sure once cardiology reads it.
Lord have mercy on Finn and his loved ones.
May Your will be done :crossrc:
 
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CelticGrace

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Finn is out of surgery and they pulled 70 mls of fluid out. We aren't 100% sure that it's chyle but the suspicion is definitely that it is. A sample has been sent to the lab for evaluation. He is very cranky from the ketamine but he was this way the past two times. Finn did great during the procedure although he fought the anesthesia HARD. They were able to get an IV in his foot which was excellent and he is breathing so much better. Now, plans change a LOT so we will see how he does overnight and I will update you all after rounds tomorrow morning.

3 chest tubes.... I still can't believe it.
 
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suzeequeue

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little Finn's mama sounds incredibly strong and optimistic. what a dear person she is. i'm so sorry for all the troubles they've had with their precious little boy. they certainly sound like an amazing family.

Father, please continue to uplift this family and keep their little boy in your loving care. thank you, Jesus. :prayer:
 
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CelticGrace

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Kelly's incredibly sweet, and always looking out for the other kids in the PICU. She's organized to get them all sorts of equipment and stuff that they needed, like toys for the play areas and special swings that are at an angle because the heart babies can't be flat on their backs for awhile after their surgery, etc.
 
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suzeequeue

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she is so kind. Finn has indeed been blessed with a caring mom. i pray the Lord Jesus will bring healing to little Finn soon so they can all go home and their lives can return to some normalcy.

i meant to mention that i have been praying for little Clover too, precious little angel. :prayer:
 
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servant of Merciful Love

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Kelly's incredibly sweet, and always looking out for the other kids in the PICU. She's organized to get them all sorts of equipment and stuff that they needed, like toys for the play areas and special swings that are at an angle because the heart babies can't be flat on their backs for awhile after their surgery, etc.
God bless her dear heart ~ Finn has an angel caring for him! :crossrc:

she is so kind. Finn has indeed been blessed with a caring mom. i pray the Lord Jesus will bring healing to little Finn soon so they can all go home and their lives can return to some normalcy.

i meant to mention that i have been praying for little Clover too, precious little angel. :prayer:
:amen: :pray:
 
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