THE ASYLUM

[bigbird 60,368]

On 11/23/2021 at 8:41 AM, McLoofus said:

Welp. Disney humbled us.

It was more or less the standard brand of exhausting, expensive, frustrating, amazing, fun, etc for the first few days. The youngest one caught a bug that made him grumpy but we managed. Then Friday night the ish hit the fan. Little dude started coughing so hard at (our very expensive, very much looked forward to character) dinner that he made himself throw up at the table. Then McWifey wakes up in the middle of the night with severe abdominal pain and drives herself to the ER. She spends the entire day and the next night in the hospital with a bladder issue. I solo dad both kids to two different parks, mostly in the rain, because it's our last day. Daughter catches son's bug. We finally bust McWifey out of the hospital on my son's birthday. Because of the delay we have to have his birthday dinner on the way home. We stop at some little Mexican place in the middle of nowhere. It's mostly empty and they're playing classic hard rock. But our server is an angel. We tell her it's his birthday and she gets all excited and starts to making special churros for him and cheesecake for my daughter and the staff is planning to come out and sing and everything. Welp, the boy cough pukes again and we have to take those desserts to go. 

We did make a lot of special memories and have some great pics to prove it. Our hotel room was really nice and we could watch the fireworks from the balcony. But damn, it was an expensive trip in several ways. 

Oh, McWifey is fine now. Just needed a break from me and the kids I guess. 

Nooooooooo!!!!

 

Man, I was hoping for the time of your lives.  Definitely some fun memories to relive when the kids get a bit older. I'm sorry, buddy. That's rough.

[bigbird 60,368]

My turn...

James made it past his elbow, but started a right hand bleed on Friday but it looks to be on track to clear for tomorrow's festivities...Welp, he hobbles in at 4:45 and says, "I feel a tingle in my left ankle". Aaaaand what's that mean? It's definitely an ankle bleed. 

The problem with this one is that it's in the actual ankle joint. That's bad for a few reasons. 1. It's usually much more painful. Think of filling up the inside of a confined space. The pressure just skyrockets. And 2. Every time he bleeds in a joint the blood causes pitting of the bone which increases his arthritic pain and can severely reduce his range of motion. 

Joint bleeds are the absolute worse.

Spent 30 minutes with my wife in my arms sobbing asking "why" with not a single thought that could remotely provide any comfort.

 

I feel I burden y'all with this stuff far too often but I can't express in words how helpful and needed the asylum and you are to my own sanity and ability to remain the bedrock needed for my family. Thank you.

[McLoofus 35,182]

11 hours ago, bigbird said:

Spent 30 minutes with my wife in my arms sobbing asking "why" with not a single thought that could remotely provide any comfort.

I feel I burden y'all with this stuff far too often but I can't express in words how helpful and needed the asylum and you are to my own sanity and ability to remain the bedrock needed for my family. Thank you.

You let her cry in her arms, and- short of James not suffering this- that was what she needed. You didn't have the words because there are none.

When I had bad back problems, one of the worst parts was the loneliness. When people tried to say nice things, it never helped and often just made it worse. But I needed to talk about it sometimes and just vent. If you don't know, you don't know. (Not that the actual afflictions are comparable, of course.)

Anyway. You know I'm Team Vent. It's not a burden, especially knowing that there is value in it for you.

[augolf1716 21,096]

15 hours ago, bigbird said:

My turn...

James made it past his elbow, but started a right hand bleed on Friday but it looks to be on track to clear for tomorrow's festivities...Welp, he hobbles in at 4:45 and says, "I feel a tingle in my left ankle". Aaaaand what's that mean? It's definitely an ankle bleed. 

The problem with this one is that it's in the actual ankle joint. That's bad for a few reasons. 1. It's usually much more painful. Think of filling up the inside of a confined space. The pressure just skyrockets. And 2. Every time he bleeds in a joint the blood causes pitting of the bone which increases his arthritic pain and can severely reduce his range of motion. 

Joint bleeds are the absolute worse.

Spent 30 minutes with my wife in my arms sobbing asking "why" with not a single thought that could remotely provide any comfort.

 

I feel I burden y'all with this stuff far too often but I can't express in words how helpful and needed the asylum and you are to my own sanity and ability to remain the bedrock needed for my family. Thank you.

Never a burden....numnuts

[bigbird 60,368]

James is home again. He has missed so much school I'm truly worried about him either having to repeat or be home schooled.  And he is so down right now that it's almost impossible to get him to do any work at home and how can I ask that when he is in obvious constant pain.

Uggh...

My wife last night admitting she is quickly losing faith and I can't say I'm not fighting like hell against that myself.  We're just lost, exhausted and beaten down. We eat a steady diet of fear for breakfast, stress for lunch, anxiety for dinner, and snack on desperation throughout the day. 

[McLoofus 35,182]

1 hour ago, bigbird said:

We eat a steady diet of fear for breakfast, stress for lunch, anxiety for dinner, and snack on desperation throughout the day. 

In addition to all the other difficult angles to James's illness, it's particularly cruel that you spend the "quiet moments" wondering when and how they'll end. If I'm reading that right. I'm so sorry. 

My son was taken away in an ambulance at 3:00 AM this morning. He never got completely over whatever he came down with at Disney. We thought he had but then came down with a high fever at school yesterday. Got some Tylenol in him last night but it wore off in the middle of the night. He and my wife slept in our bed and I slept in the guest room. Woke up to her screaming for help. Sprinted down the hall, she was crying, he was having a seizure. Ambulance arrived quickly. The paramedic took his vitals and calmed us down, said that type of seizure isn't uncommon in someone with that kind of fever. She rode with him in the ambulance. Daughter slept through all of it, thankfully. Went and picked them up about 5:45, everything seems to be okay, we just need to make sure he takes his meds every 3 hrs and that fever doesn't spike back up. 

It was very scary. I couldn't imagine constantly worrying that something like that might be right around every corner. Still, the last two weeks have been quite a rollercoaster for us. Even 3 hrs of football on Saturday contained the highest of highs and the lowest of lows. Lordamercy. 

[bigbird 60,368]

26 minutes ago, McLoofus said:

In addition to all the other difficult angles to James's illness, it's particularly cruel that you spend the "quiet moments" wondering when and how they'll end. If I'm reading that right. I'm so sorry. 

My son was taken away in an ambulance at 3:00 AM this morning. He never got completely over whatever he came down with at Disney. We thought he had but then came down with a high fever at school yesterday. Got some Tylenol in him last night but it wore off in the middle of the night. He and my wife slept in our bed and I slept in the guest room. Woke up to her screaming for help. Sprinted down the hall, she was crying, he was having a seizure. Ambulance arrived quickly. The paramedic took his vitals and calmed us down, said that type of seizure isn't uncommon in someone with that kind of fever. She rode with him in the ambulance. Daughter slept through all of it, thankfully. Went and picked them up about 5:45, everything seems to be okay, we just need to make sure he takes his meds every 3 hrs and that fever doesn't spike back up. 

It was very scary. I couldn't imagine constantly worrying that something like that might be right around every corner. Still, the last two weeks have been quite a rollercoaster for us. Even 3 hrs of football on Saturday contained the highest of highs and the lowest of lows. Lordamercy. 

My daughter had a febrile seizure when she was about 3. Scared the begeezus out of us.  I'm sorry you felt that kind of panic. It's terrifying.  

Yes, that's pretty much our 24 hr diet

[McLoofus 35,182]

20 minutes ago, bigbird said:

Yes, that's pretty much our 24 hr diet

I hope the tacos and brisket still taste good. 

 

[I_M4_AU 7,773]

3 hours ago, bigbird said:

James is home again. He has missed so much school I'm truly worried about him either having to repeat or be home schooled.  And he is so down right now that it's almost impossible to get him to do any work at home and how can I ask that when he is in obvious constant pain.

Uggh...

My wife last night admitting she is quickly losing faith and I can't say I'm not fighting like hell against that myself.  We're just lost, exhausted and beaten down. We eat a steady diet of fear for breakfast, stress for lunch, anxiety for dinner, and snack on desperation throughout the day. 

I’m sorry your family is going through this, it must be debilitating.  Is there some sort of group for therapy you can contact with similar issues?  This helped when my family went through a tragedy. Praying for relief.

[bigbird 60,368]

James went back to school yesterday in his wheelchair. Still lots of pain but gutted through. I'm doing treatments overnight to make sure nothing new starts or gets worse so he can go two days in a row. Fingers crossed.

[McLoofus 35,182]

3 hours ago, bigbird said:

James went back to school yesterday in his wheelchair. Still lots of pain but gutted through. I'm doing treatments overnight to make sure nothing new starts or gets worse so he can go two days in a row. Fingers crossed.

Fingers crossed, indeed. 

What do the treatments entail? If it's too tiresome to type out, I understand. Sounds like, at a minimum, they entail compromised sleep schedules. 

[augolf1716 21,096]

4 hours ago, bigbird said:

James went back to school yesterday in his wheelchair. Still lots of pain but gutted through. I'm doing treatments overnight to make sure nothing new starts or gets worse so he can go two days in a row. Fingers crossed.

Have you shaved yet?

[bigbird 60,368]

11 minutes ago, augolf1716 said:

Have you shaved yet?

Nope!

[I_M4_AU 7,773]

Good to hear, keep up the good work and kudos to your whole family.

[bigbird 60,368]

44 minutes ago, McLoofus said:

Fingers crossed, indeed. 

What do the treatments entail? If it's too tiresome to type out, I understand. Sounds like, at a minimum, they entail compromised sleep schedules. 

Each treatment take about 10-15 minutes from start to finish.  It consist of reconstituting a powder clotting factor into a protein suspension. We then insert a 1/2" needle into his chest through his port. We then have to push the meds over a 5 minute period.  

The schedule is two vials every 2 hours for the the first 24hours, then every 3 hours until we see bruising, then every 4 hours for 24-48 hours, then every 6 for 24, every 8 for 24, and then twice a day.

I've been avg about 1-2 1/2  hours a night.

[McLoofus 35,182]

1 minute ago, bigbird said:

Each treatment take about 10-15 minutes from start to finish.  It consist of reconstituting a powder clotting factor into a protein suspension. We then insert a 1/2" needle into his chest through his port. We then have to push the meds over a 5 minute period.  

The schedule is two vials every 2 hours for the the first 24hours, then every 3 hours until we see bruising, then every 4 hours for 24-48 hours, then every 6 for 24, every 8 for 24, and then twice a day.

I've been avg about 1-2 1/2  hours a night.

Any response I have would be quoting Captain Obvious. 

 

[bigbird 60,368]

Just now, McLoofus said:

Any response I have would be quoting Captain Obvious. 

 

As if we don't all quote him on the regular here. 😂

[McLoofus 35,182]

1 minute ago, bigbird said:

As if we don't all quote him on the regular here. 😂

And here I thought the ways in which I repackage his wisdom were clever and going undetected...

[bigbird 60,368]

Just now, bigbird said:

As if we don't all quote him on the regular here. 😂

See^^^

[bigbird 60,368]

1 minute ago, McLoofus said:

And here I thought the ways in which I repackage his wisdom were clever and going undetected...

We're all married, so we all should be conditioned to when the obvious is pointed out to us

[bigbird 60,368]

Made it to school for the 3rd day in a row!

 

Now... another hand bleed.

 

[WarTim 3,456]

3 minutes ago, bigbird said:

Made it to school for the 3rd day in a row!

 

Now... another hand bleed.

 

Prayers for you and entire family my Brother. 

[bigbird 60,368]

Also, Interview today so any additional prayers would be graciously appreciated.

[McLoofus 35,182]

15 minutes ago, bigbird said:

Also, Interview today so any additional prayers would be graciously appreciated.

You've already got more experience than folks that have already been pulling paychecks for years. You're gonna crush it.  

[I_M4_AU 7,773]

2 hours ago, bigbird said:

Also, Interview today so any additional prayers would be graciously appreciated.

Go get ‘em. Prayers of a different kind on their way.