Just When You Think

Just when you think that things can't possibly get worse...

Today started out as an okay day, maybe that was the problem.   Braeden had a really hard time settling down after his procedure yesterday and they had to switch him back to morphine and crank up his ventilator.   After a few hours of that he was finally out putting urine well over night and was seemly settled.  When I came in this morning they were just starting to ultrasound him from groin to neck in search of clots or abnormalities.  He was quite stressed during the procedure and it was no fun having to help his nurse try to calm him by holding him down.  It took three boluses of fentanyl just to keep him somewhat calm (no, they didn't offer me any!) and well over two hours of ultrasound to complete.  After the Doppler he had a good sleep for a few hours and I made the 'mistake' of coming home to make a birthday cake for Michael and do airport runs.

Just when you think it won't/can't get any worse...

I got a call from his nurse Trish (did I mention that it is never good news when they call me???) just after six.  She informed me that they had located a large clot in his left portal vein and that it is a complete blockage of the vein.  Now, this is coming through the phone from the fellowship Dr, but it is my understanding that this vein drains the liver.  Apparently there are two veins though and liver function is still adequate.  The good news (?) is that they aren't rushing him into surgery because it is not in one of the 'major' vessels but the crappy news is that we can't give him anticoagulants because his low platelets (their job is to clot) and this will just cause him to bleed.  Which also means surgery is completely out with his current platelet issues.  What they do know now is where his platelets are running off too, they go off the join the 'clot' army.  I am meeting with the haematologist tomorrow to discuss our options and go over the pros and cons of treating this.  Is he in immediate danger? No (said with trepidation), but he is being very closely watched. 

Just when you think it won't/can't get worse...

Trish informed me that Braeden was incredibly unsettled and thrashing to the point that the ventilator was failing to work for him, which ironically enough made him more upset!  He had had several of these 'episodes' and was desating to the point that the Neonatologist changed him back to morphine,( almost doubling the dose to what he was on yesterday), and they had to crank up the ventilator.  The vent is now doing the majority of the work for him, he is just too tired to try to do any breathing for himself.  Not what I wanted to hear.

Just when you think things won't/can't get any worse:

The other reason Trish called was to inform me that they were going to ultrasound his head in the morning (they couldn't do it today, he wouldn't have stood for any more testing), to search for other clots and/or a 'bleed'.  Braeden's edema actually went down on his lower body today, his head went up.  I wish there were words to describe this and a photo just wouldn't do it justice.  They (the team) are very concerned/confused at the localized swelling and find it all quite bizarre that it is also following the pattern of his swelling when he was born (all from the navel up and mostly in his head/upper torso).  The search for a bleed is yet another reason why they can't treat the clot just yet.  My concern tonight was because he was so unsettled, and that they had his morphine up that we might miss something.  The Dr assured me that his stats would show us if there were something urgent amiss.

They are still treating him with the anti fungal drugs because they still don't have a cause for the rapid rise in white blood cells.  Which, did I mention, have side effects that include liver function????

The GOOD news is that Grandma and Pappa (Wade and Jean Hicks), have arrived but the sad side of that is that Grandma Hurray (my Mom) made her way home (although it took some convincing that she needed the break).  We tried to celebrate Michael's birthday tonight but I don't know if there was much of a party feel to the night.  The boys were happy for the cake and ice cream and the excuse to go to bed a bit later.  Mike took his parents up to the hospital tonight and actually got a fairly good response from Braeden, squeezing fingers and pushing with his foot.  I just got back from the hospital and found him unsettled again.  Of course he could have heard my voice and was letting me know just how much 'life sucks'.

I am back to living life hour to hour again.  I will meet with the Haema Dr. tomorrow and the Radiologist will take a good look at his head on ultrasound (which terrifies me all the more).  The last few days seem to be a bit of a write off for positivity but I am grasping at straws for some, and for the love of Pete, someone give this damn kid a break already!!!