Monday, 12 December 2011

A Day of Dr's

What a day!  I spent 8 hrs at the hospital and it flew by due to the non-stop flow of Dr's through Braeden's room.  What a difference Mondays make when you need someone.

I met with the Neonatologist, Cardiologist (x2), Infectious Disease, Respiratory Technician, Haematologist and a General Surgeon.  The short version that we've all come to is that there is certainly something else going on aside from the Klebselia.  Braeden has certainly gone downhill again over the past two days and as much as I can mention that, nothing really happens on the weekends unless you can prove it is life or death, sorry make that immediate life or death. 

The conclusion from the above mentioned ones is that Braeden is suffering from one of two things (or both since he seems to be a lucky kid...).  They believe that there could be a secondary infection that is actually a fungal infection OR he is having issues with blood clots and they are sucking up all the 'new' platelets.

We did have a platelet level of 75 last night, 31 in the middle of the night and 7 this morning.  Even with the transfusions (4x's daily) he is still unable to maintain them.  The Haematologist is now involved to look for other underlying issues such as auto immune disorders (lupus, leukaemia, etc).  His white blood cell count keeps rising but the platelets keep falling.

Cardiology feels that his heart is strong (didn't get the echo results for today yet though) and that they are taking him off the sotolol for now with the hopes that his heart rate will rise (SVT's aside) and therefore pump harder, giving his kidneys more blood and better function.

They tried pushing PAC cells today (sp? proteins in the blood) followed by lasik with the hopes that the PAC cells would draw some of the fluid out of the tissues before being flushed by the lasik.

Infectious Disease informs me that if it is in fact a fungal infection then they will be able to view fungal 'balls' in the kidneys via  IF it is a fungal infection he will be treated with anti fungal drugs and closely watched because they come with some fantastic side effects on the liver.

The Respiratory Tech is concerned at the size of leak that Braeden has in his intubated tubing (it is loud enough to hear when you stand beside him).  Normally they would extubate and reintubate with a larger tube but with Braeden's swelling they run the extreme risk of not being able to reintubate.  Being as it took them 8 mins to intubate when he was born (which is news to me) due to the swelling and now that he is even more swollen than then...I vote a resounding NO THANKS!

The General Surgeon got involved today to perform a small procedure in which they fed a pik line (a type of IV) that goes in through his arm and down by his heart.  It had to be done in a sterile environment with the use of xray for guidance.  It was a fairly straight forward procedure but he somehow ended up by his liver at first...dunno.  Braeden unfortunately lost a fair amount of blood with the procedure due to his low platelet levels (even though they transfused him right before the procedure).  So, more transfusions, and more and more and more....

Basically they are all just pulling straws at the moment but none of them are afraid to say they 'don't know', which I respect (no matter how frustrating that is!).

So many lines

Breathe with me

look at my wee little nose under all this fluid
My fragile package
The wonderful portion of my day however was the fact that I got to hold Braeden again.  I didn't think that was going to happen for another week or two.  I was very hesitant because I know full well how painful my swelling was with him but the nurse (Trish the great), thought we should try since she had to change the bedding.  He got to lay on two pillows propped on my lap but I'm not complaining and neither was he.  He had a bit of a moment when he was 'flying' through the air to me but settled right in without a peep and had a nice steady heart rate and oxygen levels throughout.  I am hoping that those two extremely short hours were able to assist in his healing process because they certainly helped mine.

Kids fed, teeth brushed, stories read kisses goodnight and back up to the hospital I go...

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