Post Rounds- The second Friday

Emerson is blowing bubbles and moving her tongue as we speak.  They are succtioning her, and she makes sure they know that she does not like it.  I see her kicking her left foot, too.  That's my stubborn little girl!  I like to see her protest. 

Rounds just finished- they were running a bit late today.  I get so anxious for them these days.  Every day there is something to be concerned about and something to be excited about. 

This morning, we were most concerned about her white blood cell count.  It is high.  Basically, at its highest it was 50K.  Then, it went down below the normal point and then started climbing back up, only it did not stop at the normal point; it kept climbing.  It appears, we hope, to be at a plateau:  it was 25 K yesterday and 24,800 today.  Here is the real concern though:  Emmy's bone marrow is, obviously, producing white blood cells, but it is suddenly not producing red.  She needed to get blood products this morning because her hemoglobin was under 7.  Her platelets are so low that she has bruising and we cannot continue with her percussion therapy on her chest because of all of the purple dots.  We need to figure out why her platelets and hemoglobin are so low but her white cells so high.  So today we are going to involve hemotology for their opinion.  Not only am I a little scared about the idea of her needing bone marrow or whatever down the road, but I am also frustrated that it is Friday.  I know, who gets upset about FRIDAY?!  Those on the "outside" as I refer to anyone who does not live in the hospital right now :), love Fridays because it means it's the weekend.  In the hospital, though, Fridays are not fun.  Anytime you need lab work, it means you have to wait until Monday, or maybe even Tuesday, for the results unless it is a real emergency.  For blood work, I am wondering if they will even be able to take the labs; they may have to wait until Monday to do ANYTHING.  While her wite blood cell count is up, they have cultured her and so far nothing has grown to indicate infection.  So that is good news. 

The other piece of worrisome news is that her left chest tube is not working.  The really good news would be if this meant it was unnecessary, but her chest xray indicates thatt there is fluid there.  So as we speak- I was just booted from her room- Xray is back to turn her on her side so we can see better why that chest tube isn't producing anything.  No matter what, it will have to be removed, but the chest Xray will determine whether or not we put in a new one or just close that up. 

So how about some good news?  Emmy started Pedialyte yesterday, remember?  The purpose of this is to get her digestive system working again. It has not been functioning for about 11 days now- can you imagine?!!  I can't go 11 minutes without eating around here!  So  the first round left some residual fluid in her stomach- the equivilent to 2 1/2 teaspoons- so they removed it and tried again.  The next two rounds worked without residual matter, so surgery supported puting her- slowly- on formula through the feeding tube.  I really, really want this to work because if she can start getting her nutrition from a feeding tube and eventually on her own, she will no longer need the central line in her leg.  It has been in for 11 days, and with adults they never keep them in that long, but is different in pediatrics.  Her line looks fine right now, they check it every day, I think, but eventually, they will need to remove it.  The only reason they cannot remove it right now is becasue that is what her TPN- her nutrition- goes into, so until she can receive her nutrition another way, it is necessary.  There is a possibility that she will not be able to eat on her own even when she goes home, in which case they would put a pic (??) line in and she would get her nutrition that way.  It would be something surgery would have to do that goes into her chest and everything.  I think I started tuning out this information/explanation as soon as the nurse started explaining it, hoping we will never have to deal with that.  So far, she is handling the feeding tube well.  If she continues on this trend, we should be able to just close up the central line and move on. 

Also great news, that I need to remind myself to be excited about and grateful for every day, no seizures!!  I cannot imagine if those were still going on.  As of midnight tonight it will have been a week since her last seizure.  I never want to see her seize again.  They are continuing to wean her off of the Versed- the sedative and anti-seizure drug- and keeping her on the eeg until it is completely weaned.  It will be a while, though, because they have changed the weaning rate from .04 to .02 a day because of the pain she was in yesterday.  She is currently at .12 and will be weaned to .10 today.   They add morphine when her heart and respitory rate go up in case she is in pain.  She will also remain on the other three anti-seizure drugs that do not sedate her.

Emmy's urine output is still good- 18cc an hour!  Her sodium is at 145, so we are taking the extra sodium out of all of her nutritional stuff because it is not necessary anymore.  Her lactic acid is down to 1.6, which is a normal and her amonia is normal, so they are no longer even going to check for those things.  Emerson is still edemitus but slims down every day for us a bit more.  Everyone who comes in today gets excited to see a face that looks more like her!  Her eyes are no longer puffy at all.  She weighed 11.2 kilos coming in and is at 15 1/2 kilos today.  That is about 34lbs.  She is losing a little more of that weight every day. 

I think that is all we learned from rounds today.  Emmy has not shown any new movements, but is moving more often.  It seems like she is in an awake-like state more often than before.  Her eye lids move and she scrunches up her eye lids and nose, and her eye brows move up and down.  She responds to us talking to her by (appearing) to try to open her eyes as she also moves her fingers a bit and moves her mouth a lot.  She is very aware of that tube in there and chews it and moves her tongue around.  I like to imagine that she is trying to make her animal sounds at us.  I ask her what a dog says and wait and she'll move her mouth and I will say, "That's right!  Woof woof!"  I'll go through all the animals like that with her.  I'd like to think she will be able to rattle off all the animal sounds again when she wakes up because we are still going through them with her every day.