Friday, 16 December 2011

Tissue Required

This is an incredibly hard entry to write, please bear with me.  I am now going to stop saying just when you think things can't get worse because they do, they ultimately always do.  This post is kind of all over the place because there is a lot to add and it isn't necessarily in the best order.

Yesterday was one of our busiest days since Braeden first arrived.  The day started with a call from Braeden's night nurse asking if I could be there for 8 am to meet with the Haematology Dr.  Braeden had had a rough night and so we started the day running.

I arrived to Children's just after 8 to find out that we were going in for a CT scan, not an ultrasound.  Ultrasound wasn't going to give us the pictures that the Neonatologist felt she needed.  The Neo Dr's conferred with Radiology back and forth and decided on a CT rather than an MRI.  I was impressed all to hell with Dr. Wendy Yee (our Neonatologist for the past two weeks), yesterday, she personally went to find the Radiologists that would be in charge and spoke to them face to face.  It is quite the process trying to take an infant into a CT scan, especially one covered with wires and intubated.  The nurses actually called in a transport nurse from Foothills to assist.  All in all it took three nurses, an RT tech (respiratory) and myself to get him and all the equipment he is attached to there.  Seems quite 'Monty Python-esque' when the test itself took 90 seconds to complete.  I had the wonderful moment of having to decide if we would be okay with permitting the test as they have to use the radiation dye to complete the test.  Normally this is such a small amount and your body flushes it out shortly after.  However, being as Braeden's kidneys are hit and miss at the moment, it was a big decision.  Dr. Yee explained the risk of renal failure to me but the fact is we needed the test, we were just running out of answers but not problems.  The Cardiologist had followed us down to CT for the test as well and I was permitted to be in the CT room for the test.  I watched the faces of his nurse and Cardio Dr as the test was running and it is a pretty big indication of an issue when they don't look at you.  The second indication that things weren't good was the sudden flurry of activity when we got Braeden back to the ward.  The third, and probably the most unnerving sign, was that the Neo told me to call Michael to come down for the meeting.

(You will most likely want tissue before going any further, I know my heart is breaking just having to write this)

Michael and I had some of our worst fears (and I thought we'd covered most of them), come to light yesterday, Braeden has suffered a stroke.  The CT scan also showed several more clots in and around Braeden's head and neck.  There is one fairly major clot in the vein in his neck in which the brain drains down into the rest of the body.  It is not completely occluded (blocked) but pretty close.  The Neurologist believes that this clot may have actually formed while in utero and may have been the beginning of the hydrops.  It is certainly a good reason why my poor baby gets the majority of his swelling only in his upper body/head.  It is the same pattern of swelling now as it was when he was born.  Due to the findings, Neuro decided to go ahead with an MRI as well to get a closer, more in depth picture of things.
Getting prepped for my MRI

This is where my respect for Dr. Yee (Neonatologist) grew even more, she had every specialist that Braeden needed and all of their teams come to us yesterday.  I met with no fewer than 30 Dr's yesterday alone.  We were met by Neurology, Haematology, Infectious Disease, Nephrology, Genetics and Cardiology.  We spoke to and listened to all of the head specialists of these areas and their teams.  We had Dr's on top of Dr's on top of Dr's. 

The two major areas we are dealing with first are Nephrology (kidneys) and Neurology (brain).  The Nephrologist informed us that Braeden's kidneys are only functioning at 25%. He had not out putted urine for almost 6 hrs by the time they talked to us.  We had a long chat about the possible need for dialysis to start to flush out some of Braeden's fluid.  Braeden would not be a candidate for intravenous dialysis due to his low platelet counts (he could bleed out).  So we discussed the pros and cons of doing the subcutaneous dialysis in which they insert ports into his abdomen and flush the fluid through that way.  That comes with all kinds of risks itself, mostly being infection and bleeding.

Haematology was next and we talked about any family back ground of any blood disordered (which there are really none).  It wouldn't be unheard of for a baby to get a clot due to lack of movement with the swelling and the number of ports/IVs he's had but it is extremely unusual to have several clots in different places.  They were still concerned with the low platelets and the rise in white cells.  Their concern is how to balance Braeden's blood back out while not doing any harm or adding to the swelling.

The Heart:
B's heart is strong, Cardiology is happy with it just being 'stable' right now.  It's funny (not) how the heart that was my focus for so long is now waaaay down on our list.

The Strokes:
They've already happened, you cannot reverse them so there is really no treatment.  We can't and won't know the extent of damage for some time.  We know (from the MRI results, I'm throwing them in early for ease here), that the injury has happened in the lower left side of the brain which typically houses the sight.  The Neuro can also tell me that the bleed happened some time in the past week, most likely the past few days.  She informed me today not to dwell (sure, okay) on where the injury is as the brain is an amazing thing (which I can agree with), and we won't know the extent of the damage or how long term/life changing it may or may not be.  As a result we also know that there is a 25% chance of seizure activity with a brain injury.  Which ironically enough is why the CT scan finally got ordered because the Neo Dr thought he'd possibly suffered a seizure the night before.  Is he at future risk for another stroke, yes.  Can he survive this, (after viewing the MRI results), for now, yes.

The Clots:
Standard treatment for a blood clot(s) would be to prescribe anti-coagulants and go from there.  When you have blood that isn't properly balanced this doesn't work all that well because they thin the blood.  It is also not a great thing to do when you already have a bleed on the brain and the addition of this type of drug can make the bleed a great deal more significant.  However, there is NO OTHER treatment for them and to leave them just compromises his life that much more, not to mention inhibits brain flow.  Another thing with anti-coagulants is that you need the kidneys working to flush out the excess fluid that the drugs will help to deal with.  Here again we found ourselves having to apply a pro and con list.  Michael and I were both agreed that we couldn't afford to wait and we needed to proceed with the drugs.  The Nephrology team is being very conservative with the medication and is constantly changing the dosage depending on how much urine output there is.  If urine out put isn't sufficient then the dose drops and vice versa.  Other risks (as if there weren't enough?), the drugs could loosen a clot and it could travel, getting lodged elsewhere.  Which in part leads us to the kidneys.

The Kidneys:
After review, we now know the kidneys are functioning at approximately 25%.  There isn't a specific reason why (just yet anyhow), but kidneys are the source of life, when the body is under extreme stress they are the first to be affected.  The good news (???) is that as long as he is able to out put urine, we can avoid dialysis for now.  It seemed that the threat of dialysis yesterday inspired our little man to start peeing again.

 What does this mean overall?  The hell if I know (is that too harsh?).  Braeden is in such a fragile state and I cannot get a straight answer or anything close to a promise that my child may survive all of this or if he is to survive it what the quality of life may be.  I will be quite shocked if there isn't a genetic component (amniocentesis to put your mind at ease? Ha.), there are just too many factors now for there not to be.  Braeden remains in an agitated state a great deal of the time right now and the nurses are just trying to find different ways to soothe him.  He now requires two nurses around the clock with him to be on standby (not that they word it that way).  He is still extremely swollen, his weight fell a wee bit yesterday and then rose dramatically again today.  He is struggling to balance his blood pressure (it is either high or low) and it seems to be the same with his heart rate.  Ironically enough, his heart seems to be coping well with all of this.  He is still on his antibiotics and will be for the duration of the 21 days (we are just assuming meningitis at this point and treating for it).  He is still on his anti fungals due to the amount of antibiotics he's been on in the past 5 weeks and he is now on a ANOTHER antibiotic because of the continuous rise in his white blood cells.  He is coming down on his blood pressure meds but that changes daily.  His morphine levels are seemingly higher each day and he is requiring boluses when he is in a fit and won't calm down.  The MRI results are just a more in depth look at the stroke area and the clots to measure where they are located.  The results don't change anything, they just give the Neuro a more clear picture.  The Neuro and Radiologist are going to set up a meeting with Michael and I and review the images with us.  We have a hell of a lot of Dr's right now that all need to find ways to prioritize what they need and prioritize each others (other fields) needs.  They seemingly work well together and the common theme with all of them is how to keep Braeden alive.

So as if this isn't all enough on our plates, Braeden had a two minute seizure this evening right before I got back to the hospital.  He wasn't administered anti-seizure drugs as it was a short episode but it now tells us that Braeden has chosen to be in the 25th percentile that suffers from seizures. 

So how am I?  I am upright, that is about the best answer I can give you at this point.  There are not enough tears to describe the anguish that Michael and I are feeling at this point.  So once again, I thank you all for your continuing support and assistance.  Please don't feel badly if I don't return phone calls or messages.  I know how loved we are and I know that any of you would take a call from me 24/7 if I needed to talk, cry or scream. 

Somewhere deep inside of me still is hope.

5 comments:

Anonymous said...

Sending love

Anonymous said...

24/7 talk, cr>y or scream>...for sure!

Lisa-Diane said...

Lia,

This is so incrediby well written! What a brilliant way to vent! It's heart breaking to get through but answers so many questions for those of us on the outside.
Our very best thoughts and prayers are with you, Mike, Braeden and the boys.

Anonymous said...

All my love,
Mom (aka Grandma)

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