Monday morning update

We finally got to bed about midnight.  Slept (sorta) from 12-4 (with only about 6 wake ups).  Then at 4 he woke up retching, choking, screaming and with a fever of 104.9 ... here we go again.  And of course with temps that high, we have to do rectal temps.  (Side note ... some people are just NOT gentle!  Every 1-2 hours they do his temp in a rough way and he cries for at least 15 minutes saying, "Owie poo-poo".  I couldn't agree more.) 

From 4-6 he just couldn't stop crying and screaming, "Owie Mama, help" I have no clue the source of the pain but he was truly in a lot of pain.  I held him. I rocked him.  I patted him.  I rotated him.  I put him in my bed.  I sat with him in the chair.  NOTHING helped. 

I felt so incredibly helpless.  There was nothing I could do. 

Finally, about 6:05, he finally just STOPPED.  He fell asleep.  (Phew!)  But of course, that didn't last long ... at 6:15 there was another rectal temp.  And we started all over again. 

Now this morning, he freaks every time someone walks in the room (he wasn't doing that).  He also freaks every time he poops (which is often) since it burns his hiney.  And with c-diff, this is about 15 times a day right now.  And he freaks when I have to change his diaper (poor guy).

This morning, my friend Val asked if she could help and made me a "button" to share.  Isn't this cool?  Feel free to post it around with a link to this blog.  I guess it's time to spread this word farther. 

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I had a friend send this email and I thought it was a good way to answer all these questions in case others are wondering the same thing. 

Did you get to bring Kaley with you this time? Yes, Kaley is with me this time ... she wasn't with me at the ER but Dan brought her the next morning.

With this infection being some sort of Staph, does that mean it is contagious? Yes, he has some type of Staph but they aren't worried about it being contagious.  There is nothing on his skin, it's all in his blood.  I guess that makes some kind of difference.


Also wondering... if the white count is normal and everything else is whacky, does that mean Manny's body cannot fight this? I have never heard of white cell count being normal when there is an infection and fever. Me either.  I have no clue about this.  Maybe the doc can explain it to me later.  I THINK it's a function of the diflucan. 

Also wondering how the kids at home are handling this. With the focus so clearly having to be on Manny and you being gone... this is stress and upheaval.  They truly stress out every time.  They don't say that but the tension grows and it's just not the same at home without a Mama.  Dan does a wonderful job of taking care of the kids.  But it's a HUGE job (I know) on top of his other job.  I'm also blessed to have family and church family who help with meals and taking the kids places and such while I'm here. 


How is Zoe and the post-op situation going? Zoe's mouth is almost completely healed.  (Her hip is.)  She's still not back to a diet of full foods but mostly.  She is at school and happy to be back.  She is scheduled to have an appointment this week to get the stitches removed (some are still in) but not sure how we will pull that off.  She struggled emotionally this time a lot but even that is doing much better as her life is back to (almost) normal. 

How is your tooth? Broken still.  I haven't been able to get to the Dentist yet and now have no clue when I'll be able to do that.  Thankfully, I'm not in pain.  


Praying for you. In tears as i write this... my heart is breaking that you and Manny have to go through this. I wish whoever is supposed to get the message that God is real and will work in their life/lives will hurry up and get a clue so Manny doesn't have to suffer through all of this "stuff" so much.  Amen, and I am with you.  I have this thought OFTEN.  I figure if I have something to learn then let me learn it quickly.  This is a HIGH price to be paying. 


Also - what is the latest on the docs that know about the Merosin - i forgt where they are located, but was thrilled when i read your post that you were going to see them and they have actually "seen" a child with Merosin before.  The appointment is not scheduled yet ... probably for January or even February.  They're waiting for the medical records from his 2 neurologists to make that appointment.