Day 2 ICU

  During the night, they needed to wait until his blood pressures were semi-stable before they could give anything more than tylenol. About 11pmI asked again if he was stable "enough". About 20 minutes later they gave him benadryl and it helped for a few minutes it seemed. He's only been sleeping for 5 minutes before waking up to cry.


By 3am, he'd had several rounds of fentanyl and it wasn't helping so they added morphine.  It was enough to take the edge off and he was able to fall asleep for the first time in a long time.  He was still groaning all night but he wasn't screaming.  He slept from 3-8am. 

Seems his kidneys have started shutting down. He isn't diapering and he's getting tons of fluids.

His blood tests back ... the first ones taken after his last transfusion. It's looking "decent"... still critical values but headed the right direction. BUT ... the real test will be if he can maintain over night and if the numbers are still decent in the morning. We're waiting for those results now. 

He was on 3 litres of oxygen and it was keeping him at 99 pulse ox. They turned it off and he immediately tanked! They put it right back on. And he slept at 1 liter and was mostly fine.  This morning, though, he needed it turned back up as he is struggling to breathe. 

As I sit here, his respiratory rate is hovering around 60 (showing it's hard for him to breathe) but is going as high as 80's.  He's showing all the signs of respiratory distress. 

But he stopped screaming for a while last night ... He'd been screaming since 4am Monday! So I'm thankful we actually got sleep last night. (I can sleep through the nurses, the treatments, etc.. I just can't sleep through him screaming and begging for help.)

This morning his blood gasses show he is having trouble breathing and very acidic (so they gave bicarb)
His glucose is 287 (showing acute stress) so they are giving insulin
His platelets are low still (but higher than yesterday).  About to receive some more.
But his blood pressure is stable (mostly)
He is retaining lots of fluid so they are giving him lasix.
His chest xray showed fluid ... hopefully the lasix will help and it won't develop into pneumonia.

1pm they had stabilized him with the platelets and felt they had a very short window of opportunity. The surgeon came immediately up and they did the sedation and removal in his bed to not cause him even more distress. 

As I was kicked out of the room, God's timing was again perfect.  My friend Val arrived.  She had just flown in from Maryland to help and do what she could for me.  Isn't that amazing? 

She brought me lunch and sat with me while we waited for the news.  I was thrilled not to be alone.  Eventually they got it out and got in a new IV line.  He did great!  No breathing complications.  All went perfectly. 

Taken just as they felt him stable enough to remove the broviac. (Does he look stable to YOU?)

Now we wait.  Hoping that most of the infection was on the line and that when they pulled the line, they pulled the source of the infection too.  We will know with the next blood tests tomorrow hopefully.  There are many concerns still at this point but I won't ennumerate them all.  We will just cross all bridges when/ifwe get there. 

The blood pressures are (mostly) stable.  Which is great. His breathing is still very shallow and labored (not great). They continue to give him lasix to remove the excess fluid buildup in his whole body and specifically the pulmonary edema.  They hope this will help or the only other option is to intubate him and put him on a ventilator.  The benefit of it is that he would be calm, stop struggling to breathe, etc.  But the problem s, sometimes once a child is this weak and put on a vent, sometimes they can't come off.  So they really don't want to do that for him.

For the past few hours, Val and I have been watching and listening to him sleep.  He has the most pitiful little whine/breathing thing.  Makes you feel completely helpless. His pain is still high it seems. 

A little while ago, Tara and Clayton stopped by with a care package.  Long time readers will remember them ... he is Zoe's friend who had the bone graft the same day she did. 

As I write this, Val ran to get some dinner (isn't that amazing too).  Everyone keeps asking what they can do to help and I honestly don't know.  All I can think of is what is inside these 4 walls.  And all I want is for him to get better. 

Tonight, he's starting to throw PVC's .. indicating heart is starting to stress. 

Dan showed up and hung out for a while.  Manny tried to wake up to chat but couldn't quite do it. 

As i type this part, it's almost 9:30 and he's starting to scream in pain again.  Nurse is about to suit up to bring pain meds.  His respiratory status is still not good (fast/shallow breathing, flaring, grunting, etc).  He's borderline to needing a vent still. 

The lasix is starting to work.  Kidneys are back on-line.  He's coming down in weight.  (He was 12.1 then 14.4kg ... not sure what he'll be tonight yet but I know it's down some. I can tell by his tummy ... his diaper can almost close again.) 

Me?  Exhausted tonight.  It all kinda hit me.  I've been in full out crisis mode.  I've been just moving from one fire to the next with him.  Tonight, he's (relatively) more stable than last night so I think I'm starting to feel the gravity of the situation.  And the lack of sleep is starting to catch up with me.  But there is no where else I could/should be.