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RIP Riley (1 Viewer)

She's doing good. Spits up when she burps and has a bad diaper rash but that's normal baby stuff. Wife and I have taken her out for walks. Getting her stiches removed Tuesday.

 
I'm off all week. I'll post some photos later. Two doctors appointments today. Pissed off because my wife's employer dropped the ball and never added Riley to our coverage even though we enrolled her well before the 30 day window. Now I have to pay a $300 deposit at one doctor and ask for a refund when she is finally enrolled and they can resubmit the claim. Imagine that NICU bill?

 
shadyridr said:
I'm off all week. I'll post some photos later. Two doctors appointments today. Pissed off because my wife's employer dropped the ball and never added Riley to our coverage even though we enrolled her well before the 30 day window. Now I have to pay a $300 deposit at one doctor and ask for a refund when she is finally enrolled and they can resubmit the claim. Imagine that NICU bill?
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If only there was some pot of money that people could have donated into that could be used to float some of this until the enrollment is finalized ;)

 
shadyridr said:
I'm off all week. I'll post some photos later. Two doctors appointments today. Pissed off because my wife's employer dropped the ball and never added Riley to our coverage even though we enrolled her well before the 30 day window. Now I have to pay a $300 deposit at one doctor and ask for a refund when she is finally enrolled and they can resubmit the claim. Imagine that NICU bill?
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Ballpark that NICU bill around $10-20k per day. 

 
Idiot Boxer said:
If only there was some pot of money that people could have donated into that could be used to float some of this until the enrollment is finalized ;)
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Lol I was planning on it but the insurance situation was squared away. I was nervous because it was after 30 days that fund wouldn't have covered a seven week nicu stay. Anyway first doctor appointment down. She had a slight heart murmur but it's gone now. Next appointment is with endocrinologist to wean her off steroids.

 
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shadyridr said:
Lol I was planning on it but the insurance situation was squared away. I was nervous because it was after 30 days that fund wouldn't have covered a seven week nicu stay. Anyway first doctor appointment down. She had a slight heart murmur but it's gone now. Next appointment is with endocrinologist to wean her off steroids.
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Thanks for letting us all in on this. First to even post in the first place, but to also keep us all updated on a regular basis. 

Warms my heart to see these updates.  :thumbup:

 
Two of the residents who first treated Riley in the NICU saw her today at the clinic and were blown away. They said they've been thinking about her for weeks and were so happy to see her doing well. You had to see the pure elation on their faces. I was so proud of my little fighter. One of them was like, she's eating well? Gaining weight? Tracking? Her tone is good. He was almost in shock. They are doing their case study on Riley. Asked me if they could take pictures of the rashes which I was more than happy to allow. Proud daddy moment today.

Anyway, they are starting the steroids wean today. I have to look for any changes in energy, feeding, fever. Etc. the doctor gave me his personal number if any issues

 
shadyridr said:
Two of the residents who first treated Riley in the NICU saw her today at the clinic and were blown away. They said they've been thinking about her for weeks and were so happy to see her doing well. You had to see the pure elation on their faces. I was so proud of my little fighter. One of them was like, she's eating well? Gaining weight? Tracking? Her tone is good. He was almost in shock. They are doing their case study on Riley. Asked me if they could take pictures of the rashes which I was more than happy to allow. Proud daddy moment today.

Anyway, they are starting the steroids wean today. I have to look for any changes in energy, feeding, fever. Etc. the doctor gave me his personal number if any issues
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New FFA thread idea - names for the medical case study.

Baby Riley: A Case Study in How to kick Incontensia Pigmeti's ###.

 
My wife still runs into kids she cared for as a NICU nurse.  She'll point out kids that she cared for that had bleak outlooks playing baseball in my sons league as 6 year olds. 

Its amazing what these kids and nurses can do these days.

 
jb1020 said:
My wife still runs into kids she cared for as a NICU nurse.  She'll point out kids that she cared for that had bleak outlooks playing baseball in my sons league as 6 year olds. 

Its amazing what these kids and nurses can do these days.
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go on...

 
Endocrinologist says we need to try and avoid getting Riley sick because steroid wean causes lower immunity and if she did get sick would require a boost of steroids. Justin comes home from school with sore throat and 102 degree fever.

 
shadyridr said:
Endocrinologist says we need to try and avoid getting Riley sick because steroid wean causes lower immunity and if she did get sick would require a boost of steroids. Justin comes home from school with sore throat and 102 degree fever.
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Welcome to the world of the germ farm.  Your schools run late.  Ours let out a month ago.

Time for quarantine.  I'm just glad Riley is well enough and home to even have this problem.

 
Mrs. Rannous said:
Welcome to the world of the germ farm.  Your schools run late.  Ours let out a month ago.

Time for quarantine.  I'm just glad Riley is well enough and home to even have this problem.
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In NJ and NYC the schools start after Labor Day and typically aren't out till the last week in June

it's been like that since I was a kid.  Our summers were always July and August

 
Her wound may have opened slightly so have to bring her back to the doctor and they may have to put skin staples in. Thought we had a day free of appointments today and it's my son's birthday.

 
Happy birthday to Justin. Can't be easy for him to deal with all this and not even get 'his'day. He's handled things better than most folks ten times his age would. He's well on his way to being a remarkable young man. Kudos to you and your wife.

 
I'm a constant worrier now and I wasnt like that with Justin. Last night Riley was giving us trouble eating the bottle. As I said a few posts ago, Justin has had a fever all week now with no other symptoms. He clearly has some kind of virus. We try to keep them separated as much as possible but when she wasn't eating I got nervous she was getting sick. So we took her temperature and it was 99.6 so I started getting ready to bring her to ER. Before I did I called her doctor and he asked how I took the temp and I said rectal and he said 99.6 for a baby is perfectly normal. Then ten minutes later she wolfed down a bottle so crisis averted and I panicked for no reason. Today we weighed, another thing we never did with Justin, and she is over 10lbs now, so gaining weight as expected. I also keep a log off all her feedings and medications another thing I didn't do with Justin. I thought the second kid was supposed to be the easy one lol.

 
shadyridr said:
I'm a constant worrier now and I wasnt like that with Justin. Last night Riley was giving us trouble eating the bottle. As I said a few posts ago, Justin has had a fever all week now with no other symptoms. He clearly has some kind of virus. We try to keep them separated as much as possible but when she wasn't eating I got nervous she was getting sick. So we took her temperature and it was 99.6 so I started getting ready to bring her to ER. Before I did I called her doctor and he asked how I took the temp and I said rectal and he said 99.6 for a baby is perfectly normal. Then ten minutes later she wolfed down a bottle so crisis averted and I panicked for no reason. Today we weighed, another thing we never did with Justin, and she is over 10lbs now, so gaining weight as expected. I also keep a log off all her feedings and medications another thing I didn't do with Justin. I thought the second kid was supposed to be the easy one lol.
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The best laid plans of mice and men and all that.

 
Thanks Shady for the updates.  So glad things are looking up.  Riley is a beauty! Happy Birthday Justin!

 
shadyridr said:
I'm a constant worrier now and I wasnt like that with Justin. Last night Riley was giving us trouble eating the bottle. As I said a few posts ago, Justin has had a fever all week now with no other symptoms. He clearly has some kind of virus. We try to keep them separated as much as possible but when she wasn't eating I got nervous she was getting sick. So we took her temperature and it was 99.6 so I started getting ready to bring her to ER. Before I did I called her doctor and he asked how I took the temp and I said rectal and he said 99.6 for a baby is perfectly normal. Then ten minutes later she wolfed down a bottle so crisis averted and I panicked for no reason. Today we weighed, another thing we never did with Justin, and she is over 10lbs now, so gaining weight as expected. I also keep a log off all her feedings and medications another thing I didn't do with Justin. I thought the second kid was supposed to be the easy one lol.
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You're doing great shady - Dad of the Year IMO

 
Hate to bump this with some bad news like the last guy said but Riley had a tough weekend. Lethargic, lack of appetite, vomiting/spitting up. It all coincides with the weaning of the steroids. She was on 5mg of hydrocortisone twice a day and last Monday, endocronologist told us to reduce it to 2.5mg twice a day and to call him on Thursday to tell him how she is doing. She was doing fine by Thu so he said to reduce her to 2.5mg once a day on Friday. Since Saturday her demeanor changed. All the spitting up also caused her to lose weight. They tested her cortisol levels yesterday at 8am and hopefully we will get results later today and that will provide some insight. I told the endocronologist I think they weaned her too quickly and he said to bring her to her pediatrician later today and he will call me when he gets results. Poor girl. I feel so helpless.

 
Ok, a speed bump in the road shady, they / you will dial this in and get her better quickly.  I know you feel helpless but you are doing everything in your power as a parent.  Keep the faith. 

 
Thanks for the update, Shady!  Hope the docs get this dialed in soon.  You and Riley and family are tough enough to face down this setback.

 
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