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RIP Riley (2 Viewers)

shadyridr said:
Out of all the ####### things, that ####### ### #### wound is causing complications now. Im a nervous wreck right now. Doctor just called me saying she had some sporadic fevers over the weekend. They keep doing blood work to rule out infection but her cultures came back positive so they are starting her on antibiotic right now. Also, they want to do a bone scan to see if the wound impacted the bone. They are injecting her with a dye and they are also giving her the MRI today. I cant even think straight. Just keep praying please. My heart cant take any setbacks.
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Your heart can take whatever else comes.  So can hers.  You guys got this.  

 
She's drinking more getting stronger and this wound will be no problem for her. She's fought bigger things then that wound. I feel she is turning the corner. 

 
Sounds like a minor setback for a little gal who has already overcome so much.  Continued TPWs, shady.   Sorry about the unimaginable stress this is causing you and your family. 

 
thoughts and prayers going out to the little one and her family ... may you all find strength to see this through, and may she vanquish this setback asap

 
We are all there with you Shady. Riley is a tough kid - and she's got you, your wife, and the power of the FFA all pulling for her. 

I think we should organize a "shots for Riley" party. When she goes home, we all agree on a time and day and have a joint FFA shot in Riley's honor.

 
Koya said:
Looking for a brighter day - hows our little fighter girl doing?
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Still no results as far as I know. Wife is at the hospital waiting to talk to the doctor. The waiting is just agonizing. They are treating her with antibiotics for infection. That is all I know to this point.

 
I dont how I can keep doing this. Five weeks and still no end in sight. Im tired of answering my son every day. First thing he asks is how's Riley and is she coming home soon? I can't focus on work at all. I've been very unproductive. I barely hold conversations with people at work. The way people look at me with sorrow.  I've had a huge knot in my stomach all day. I just can't take it anymore. 

 
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shadyridr said:
I dont how I can keep doing this. Five weeks and still no end in sight. Im tired about answering my son every day. First thing he asks is how's Riley and is she coming home soon? I can't focus on work at all. I've been very unproductive. I barely hold conversations with people at work. The way people look at me with sorrow. I just can't take it anymore. 
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Hang in there brother. You and Riley have fought this far, stay strong.  You've got a massive support system of people who give a crap and have your back, and we're all sending all the good energy we can muster.  

 
shadyridr said:
I dont how I can keep doing this. Five weeks and still no end in sight. Im tired of answering my son every day. First thing he asks is how's Riley and is she coming home soon? I can't focus on work at all. I've been very unproductive. I barely hold conversations with people at work. The way people look at me with sorrow.  I've had a huge knot in my stomach all day. I just can't take it anymore. 
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I cannot possibly imagine what you're feeling right now.  But I do know that you can take it for another day.  And another one tomorrow if you have to. But focus on today.

This is horrifying.  And hard.  And unfair.  And frankly, total bull#### and the reason I don't believe in a Christian God.  But it's temporary.  And you are equal to this task.  I don't know you very well, but I know you are equal to this.  You don't have to crush it and walk around smiling like nothing horrible is happening.  You don't have to win running away.  You just have to be standing when the dust settles.  And you will be.  And it will settle.  

You don't eat an elephant by setting out to eat an elephant.  You just keep taking another bite.

 
shadyridr said:
I dont how I can keep doing this. Five weeks and still no end in sight. Im tired of answering my son every day. First thing he asks is how's Riley and is she coming home soon? I can't focus on work at all. I've been very unproductive. I barely hold conversations with people at work. The way people look at me with sorrow.  I've had a huge knot in my stomach all day. I just can't take it anymore. 
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I honestly don't have any advice to offer.  I just hope you and your family and especially Riley pull through this and somehow look back on it all as a time that pulled all of you together.

 
I cant imagine how you're feeling but I am noticing from your posts that your son seems to have an incredible amount of selflessness and concern which is amazing for a small child and that's a testament to you as a parent.  

 
Scoresman said:
I cant imagine how you're feeling but I am noticing from your posts that your son seems to have an incredible amount of selflessness and concern which is amazing for a small child and that's a testament to you as a parent.  
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Thank you it means a lot. He prays for her everyday and we're not even religious people.

 
Henry Ford said:
I cannot possibly imagine what you're feeling right now.  But I do know that you can take it for another day.  And another one tomorrow if you have to. But focus on today.

This is horrifying.  And hard.  And unfair...  But it's temporary.  And you are equal to this task.  I don't know you very well, but I know you are equal to this.  You don't have to crush it and walk around smiling like nothing horrible is happening.  You don't have to win running away.  You just have to be standing when the dust settles.  And you will be.  And it will settle.
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:goodposting:

 
No to be problem solving guy, but since you brought up that you were struggling at work, hopefully you have filed for FMLA?  Even though it is unpaid, it does provide 12 weeks of work protection.  So if you feel like you just can't mentally make it through the day there or need some time to be alone, with your family, etc., you can have it.

Hang in there, man...

 
Just venting here: she had her MRI on Monday and results were know yesterday. My wife was at the hospital all morning and the doctor didnt come until late and then he started rounds. She left at 12 and went back at 5 and the doctor was gone for the day. The other neonatologist on staff did talk to my wife but he said the neurologist spoke to the other doctor and he will talk to her this morning. The doctor she talked to only said the MRI showed some issues but didnt really clarify. How does he just say that to my wife without further details? I went at 8pm and was going to insist the doctor either speak to the other doctor by phone or at least call me but BOTH doctors were gone. My wife has been a nervous wreck ever since.

Even though I am also nervous I put on a brave face and told her to be strong. "The results cant be worse than they told us 4 weeks ago, Riley is doing great, and theyve already been wrong once before. We knew the MRI would have issues. The doctors are very negative and will not give you hope. No matter what the results of the MRI say, Riley can and will overcome them." I thought it was a good pep talk.

 
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shadyridr said:
Just venting here: she had her MRI on Monday and results were know yesterday. My wife was at the hospital all morning and the doctor didnt come until late and then he started rounds. She left at 12 and went back at 5 and the doctor was gone for the day. The other neonatologist on staff did talk to my wife but he said the neurologist spoke to the other doctor and he will talk to her this morning. The doctor she talked to only said the MRI showed some issues but didnt really clarify. How does he just say that to my wife without further details? I went at 8pm and was going to insist the doctor either speak to the other doctor by phone or at least call me but BOTH doctors were gone. My wife has been a nervous wreck ever since.

Even though I am also nervous I put on a brave face and told her to be strong. "The results cant be worse than they told us 4 weeks ago, Riley is doing great, and theyve already been wrong once before. We knew the MRI would have issues. The doctors are very negative and will not give you hope. No matter what the results of the MRI say, Riley can and will overcome them." I thought it was a good pep talk.
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Great pep talk.  Good work, Dad. 

 
Best wishes

Having been through a situation with an extremely ill loved one who required extensive hospital stays, I can sympathize with how emotionally straining your situation is.  As with myself, all I believe you want is to know is what's going on.  What I found is that the doctors know how to keep people comfortable and they have a plan that they hope will result in the best possible outcome, but they really don't know what's going on either.  The only thing I could do was prepare myself for the day expecting the best outcome was coming.

There were two things that I did that helped me with my journey.  The first was I kept a log.  I made sure to ask the nurse what the results of each examination and tests were.  I also wrote down questions as they came to me and made sure to ask them whenever I had a chance because, like you, I quickly realized those opportunities are hard to come by.  The other thing I did was tried to make myself available for rounds.  Obviously this is much more difficult than it would seem due to the high variance in the doctor's schedule and the rapidity of the event once it occurred.  I was constantly hounding the hospital staff to get as much information as I could.

 
i type a lot of stuff in here and delete it because what am i going to say that others have not already or that would be worth half a damn anyhow but i do want to say that riley you and your family are in my thoughts and prayers every day and like everyone else here we are all pulling for you and are beyond impressed by how you have been coping with this and staying strong for your family so when you do start feeling low or like you can not do this any more know that there is a whole lot of wind at your back and that we are all pulling for you in short keep your chin up because you got this 

 
SWC said:
i type a lot of stuff in here and delete it because what am i going to say that others have not already or that would be worth half a damn anyhow but i do want to say that riley you and your family are in my thoughts and prayers every day and like everyone else here we are all pulling for you and are beyond impressed by how you have been coping with this and staying strong for your family so when you do start feeling low or like you can not do this any more know that there is a whole lot of wind at your back and that we are all pulling for you in short keep your chin up because you got this 
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And you can take that to the bank, brohan shady.

 
Finally got some answers...

Infection is NOT in the bone. Great news. They will keep giving her antibiotics and checking her cultures until negative for infection.

The surgeon also spoke to my wife and said the wound is healing nicely and as expected.

Now on to the MRI results. Mind you, just to reiterate, I told my wife this morning I dont care about the MRI results and only time will tell and I have confidence Riley can overcome the odds because she already proved the doctors wrong once. The doctor said if they were to just look at the MRI results, things would appear bad because she has a lot of damage to her left side. However, only time will tell and the fact that she's already sucking on her own is a good sign. Early Intervention should help. Other than that he didn't say much. I think my wife was content with that discussion. Riley does have some right side weakness but Physical Therapist said she's doing well. From research it appears left side impacts speech as well but again I am hopeful early intervention will help her there too. She may take longer to develop but I do have hope she will get there eventually. Tons of stories online of people told their child would never walk or talk and they are thriving now.

 
shadyridr said:
Finally got some answers...

Infection is NOT in the bone. Great news. They will keep giving her antibiotics and checking her cultures until negative for infection.

The surgeon also spoke to my wife and said the wound is healing nicely and as expected.

Now on to the MRI results. Mind you, just to reiterate, I told my wife this morning I dont care about the MRI results and only time will tell and I have confidence Riley can overcome the odds because she already proved the doctors wrong once. The doctor said if they were to just look at the MRI results, things would appear bad because she has a lot of damage to her left side. However, only time will tell and the fact that she's already sucking on her own is a good sign. Early Intervention should help. Other than that he didn't say much. I think my wife was content with that discussion. Riley does have some right side weakness but Physical Therapist said she's doing well. From research it appears left side impacts speech as well but again I am hopeful early intervention will help her there too. She may take longer to develop but I do have hope she will get there eventually. Tons of stories online of people told their child would never walk or talk and they are thriving now.
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There is a truism in the neurological community: if you are going to get a brain injury, you want it as young as possible.  The brain isn't wired yet - it doesn't have to rewire things, it just has to wire them. 

You have the right attitude.  And man, if what comes out of this is a little visual spatial difficulty from the right side dominance.... well, let's just say my wife has that issue when she's driving, and it ain't structural.

You got this.

 
shadyridr said:
Finally got some answers...

Infection is NOT in the bone. Great news. They will keep giving her antibiotics and checking her cultures until negative for infection.

The surgeon also spoke to my wife and said the wound is healing nicely and as expected.

Now on to the MRI results. Mind you, just to reiterate, I told my wife this morning I dont care about the MRI results and only time will tell and I have confidence Riley can overcome the odds because she already proved the doctors wrong once. The doctor said if they were to just look at the MRI results, things would appear bad because she has a lot of damage to her left side. However, only time will tell and the fact that she's already sucking on her own is a good sign. Early Intervention should help. Other than that he didn't say much. I think my wife was content with that discussion. Riley does have some right side weakness but Physical Therapist said she's doing well. From research it appears left side impacts speech as well but again I am hopeful early intervention will help her there too. She may take longer to develop but I do have hope she will get there eventually. Tons of stories online of people told their child would never walk or talk and they are thriving now.
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Neuroplasticity has come a long way as well.  Make sure that you are getting up to date information on the best way forward.  They are discovering new ways the brain heals itself all the time.  

 
While I have no idea, but I imagine it must be extremely difficult, I think you should try to keep in the back of your mind that just a few weeks ago you were contemplating life without your little girl.  Now the talk has turned to how to best make sure Riley has every opportunity to thrive in life.  Your family is in a much better place now and we're all praying that her outlook only continues to improve.

 
shadyridr said:
Finally got some answers...

Infection is NOT in the bone. Great news. They will keep giving her antibiotics and checking her cultures until negative for infection.

The surgeon also spoke to my wife and said the wound is healing nicely and as expected.

Now on to the MRI results. Mind you, just to reiterate, I told my wife this morning I dont care about the MRI results and only time will tell and I have confidence Riley can overcome the odds because she already proved the doctors wrong once. The doctor said if they were to just look at the MRI results, things would appear bad because she has a lot of damage to her left side. However, only time will tell and the fact that she's already sucking on her own is a good sign. Early Intervention should help. Other than that he didn't say much. I think my wife was content with that discussion. Riley does have some right side weakness but Physical Therapist said she's doing well. From research it appears left side impacts speech as well but again I am hopeful early intervention will help her there too. She may take longer to develop but I do have hope she will get there eventually. Tons of stories online of people told their child would never walk or talk and they are thriving now.
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You mentioned they might lower/remove the anti-seizure meds in an earlier post but I might have missed the follow up.  Have they lowered/removed them?  

 
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shadyridr said:
Now on to the MRI results. Mind you, just to reiterate, I told my wife this morning I dont care about the MRI results and only time will tell and I have confidence Riley can overcome the odds because she already proved the doctors wrong once. The doctor said if they were to just look at the MRI results, things would appear bad because she has a lot of damage to her left side. However, only time will tell and the fact that she's already sucking on her own is a good sign. Early Intervention should help. Other than that he didn't say much. I think my wife was content with that discussion. Riley does have some right side weakness but Physical Therapist said she's doing well. From research it appears left side impacts speech as well but again I am hopeful early intervention will help her there too. She may take longer to develop but I do have hope she will get there eventually. Tons of stories online of people told their child would never walk or talk and they are thriving now.
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This is on a totally different age scale, but my grandmother (who is 95) had a stroke on Mother's Day last month. The stroke was on the left side of her brain. She can speak fine, and move her legs fine. She couldn't move her right arm or hand after the stroke. Within a week she could move her right arm well. The doctor said she probably won't ever be able to use her right hand again. She is slowly getting her grip back in it. Just yesterday she was able to pick up her hanky with her right hand. People defy the odds all the time, and Riley has already proven she is one tough cookie.  :gang2:

 
Kanil said:
You mentioned they might lower/remove the anti-seizure meds in an earlier post but I might have missed the follow up.  Have they lowered/removed them?  
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Doubt they will remove them for awhile but they did lower them. Since she is active and eating now they probably will not lower them anymore. I have read online that neurologists will not begin weaning people off anti-seizure medicine until they are seizure free for a year.

 
The day this kid graduates from high school, I have a feeling there will be about 200 insane internet geeks wearing FBG t-shirts and carrying #TeamRiley signs in the stands.

 
shadyridr said:
I dont how I can keep doing this. Five weeks and still no end in sight. Im tired of answering my son every day. First thing he asks is how's Riley and is she coming home soon? I can't focus on work at all. I've been very unproductive. I barely hold conversations with people at work. The way people look at me with sorrow.  I've had a huge knot in my stomach all day. I just can't take it anymore. 
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Hang in there, man.  I've been there.  It does get better.

Unlike Henry, this is precisely why I do believe in a Christian God.  He helped me get through yet another day during those dark times.  I am praying for you, bud.

 
Henry Ford said:
The day this kid graduates from high school, I have a feeling there will be about 200 insane internet geeks wearing FBG t-shirts and carrying #TeamRiley signs in the stands.
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That would be awesome.

and shady, #### that noise that you can't handle this. You're doing exactly what you should be doing.  Keep being your daughters     advocate, love your family, love yourself and don't sweat what other people think. 

 
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