Dec 4, 2011

Ups and Downs

The night was long. Long. LONG. 

Manny's fever keeps spiking.  It will come down to a low grade fever for about 2 hours after tylenol but then right back up (and he can only have that every 4 hours).  He can't have the Motrin due to being on Heparin (it's a blood thinner and they don't like to mix those two).  There are some other very strong pain meds that will bring the fever down too but have some strange side effects.  So for now, I'm asking them to just let his body work.  Give the Tylenol every 4 hours but then nothing else unless the fever goes very high. 

At this hospital, if you have a fever, you have to have your temp taken every 2 hours.  Add that on top of the already frequent medicine delivery, the vitals being taken, the loud nurses, the kids being admitted down the hall, etc.  Then throw in that Manny is in pain and needs to be repositioned OFTEN.  (Not to mention he is usually right beside me and I can rotate him without getting up, but here, his bed is across the room.)

If all that weren't bad enough, he needed blood drawn.  That should be no problem now that he has a central line, right? WRONG.  They needed blood from there PLUS a peripheral site.  So at 5am, they came in to do the blood draw in our room.  I requested very kindly that this be done in the treatment room.  (Why?  I want there to be NO pain in this room so that he doesn't freak out every time someone enters the room.)  They were happy to do that ... but if I hadn't requested it, they wouldn't have thought of it themselves. 

He woke up as I walked down the hallway and he started crying.  You see, we NEVER leave the room.  If we do, it's to go to the treatment room so he knew.  He was in full scream by the time we entered the room.  By the end, there were 4 nurses (including the charge nurse) trying to find a vein to use.  I hoped that he might have one since he's been on a PICC and then the broviac.  But after several sticks and no luck, they finally gave up. 

At least he got a pinwheel out of the deal

Nothing like leaving that room of torture only to know we have to go back again in a little bit.  OR they will send someone from the lab to draw it.  And they will not go to the treatment room, that will be done in his bed.  (ugh)

Also, during the night, they finally hung his TPN, but only part of it.  I'm not sure why the doc didn't include his lipids (what's the reason or was it oversight?).  We're also waiting for the results of numerous blood tests.  The most important ones: What is the yeast growing so we can treat it specifically?  And is his infection still going up or is it coming down?  And will we be able to save the line or will it have to be pulled?

7am, our nurse came in and it's Dana!  One of his very first nurses he ever had when he was here at 11 months.  He was still very sleepy and not feeling well but he still managed to ask her for a kiss and a blanket.  :) 

(This picture is from a game they play. "Feeding Kitty".  He tells her to jump, she does and he says, "Good kitty" and feeds her a treat.  Then it's "Sit".  This cat has a lot of really cool tricks that impress Manny greatly and he feeds her lots of treats! LOL)
10:30, Doc came in.  I am clearly in a funk.  I wasn't my usual self.  No banter, no jokes or anything.  I feel like someone punched me in the gut.  Why?  Because he is not getting better.  Reality is setting in.  I told him that I was just tired.  He'd been doing soooo great that we actually made plans to go out of town for Winter break.  So for this to happen is to have the two worlds collide in a harsh way. 

12 My Mom and Sister came for a quick visit.  Manny perked right up to see them.  Me?  Not very good company.  I'm exhausted and have very little "fight" in me.  I have plenty of fight to help Manny recover but not any left over! 

12:30 Nurse told me that Doc ordered Vitamin K for him.  Why?  She didn't exactly know but the labs were concerning.  So I asked her to print me off the labs (which she did) and I've been researching.  Not exactly sure what all is going on but there is a definite pattern going on. 

Baby Jaguar taking a nap in Manny's bed

Seems his Red Blood Cells are all out of whack including the hemoglobin, platelets, etc.  His clotting time is also very high (thus the need for the Vitamin K lest he spring an internal bleeding leak).  His Sed Rate and C-Reacive Protein are also dramatically on the rise.  Thus indicating an infection process.  But his White Blood Cells are going down, down, down.  So ... unless I'm interpreting this wrong, the bacteria is under control but the fungus/yeast is out of control. 

Kaley and Manny watching the Chipmunks sing praise songs

This morning his fevers were being (mostly) controlled by Tylenol for about 2 hours, now it's not even making a dent on it.  So we're having to add a fever reducer via IV.  Hoping that helps. 

5:30, vitals taken and for the first time, he's under what they consider a fever - he's 100.0.  He was us playing, looking pretty good. 

6:45 pm, he starts acting wacky.  Glassy eyed, heart rate very high, strange breathing, etc so I called the nurse. 

At the same time, dear friends Rich and Elsa delivered some chips and salsa and fruit for Kaley and me and some elmo balloons for him.  (Pic to come).  They had to hurry out after praying for him. 

Nurse came in with another nurse who also loves Manny and has been his nurse several other times.  They were brainstorming what could be wrong.  The said to take vitals.  Blood pressure was normal but heart rate was through the roof.  Then they took temp and it was 105.3

They immediately stripped him down and put cold, wet cloths on him and then administered 3 fever reducing meds and called the Doc. 

It took about 2 hours but it went back to 100 and he was himself again.

As I write this, it's 10:30 pm he is playing and wide awake, but the fever is starting to creep again.  They will be checking him every 2 hours.  If it goes over 103, they will check him every hour until it goes back down again.  I have 2 nurses on tonight so that always helps to have 2 sets of eyes. 

Praying for a CALM night. 

I cannot tell you how much it means to all of us that so many are praying for him on such a fervent, consistent basis.  I know we're being held together by prayer alone. 


  1. wishing I could come and give you a break. Are you sleeping? Are you eating? Manny needs you to take care of yourself. Please do. Love you guys. Praying for Manny.

  2. Luke 4:38-41 - When Jesus got up and left the synagogue (after healing the madman) he went into Simon (Peter)'s house. Simon's mother-in-law was suffering from a high fever, and they asked Jesus about her. He stood over her as she lay in bed, brought the fever under control and it left her. At once she got up and began to see to their needs.

    Lord, we believe. We know of Your goodness and mercy and compassion and power. Show Yourself strong, Lord. May You be glorified in the healing of this child. Come, Lord. We ask in Your name. Amen.

  3. We're praying and thinking of you and loving you over the miles. Is there anything else we can do?

  4. I will pray for your little sweety:)
    I saw he is on heparin. My sister had problems with clotting, platelets, red blood cell counts etc because she was allergic to heparin and developed HITT. Have they tested for this???

  5. Praying for you all today...and tonight...

  6. I was not supposed live. but I did, cause I had a praying mother. & I wasn't supposed to walk & hear I am 41 years later still walking, & loving life.