Saturday, November 17, 2012

Too Little, Too Much, Too Late

Where to start? The first thing I should do is apologize for the late update but there are two very good reasons for the lag time: one, we were all mentally and physically exhausted last night and two, I was really too frustrated and angry to write anything that would be less than venomous!

The long and short of it is we did absolutely NOTHING yesterday! For those of you who don't know us or Max well you will probably think I'm making this whole thing up, for those of you who do know us you'll know this is par for our course. After spending the entire day in pre-op, where not a single medical professional soul darkened our doorway, we finally had Max's blood draw done around 3 o'clock. Why so late in the day? It's simple really, nurses don't always listen to moms so although I continually asked our nurse, who was quite busy sitting on his posterior, to draw Max's blood levels it took the surgeon coming out and yelling at everyone involved because the results weren't available thus delaying Max's procedure even more. When the nurse finally came in the room, quite angry about the whole thing, he quickly began manhandling Max and treating him as though he had no right to be upset with this treatment. He was in a rush and Max was holding him up! I have never in all my eleven years in pediatric facilities seen a nurse so impatient and ambivalent towards a child. I was absolutely appalled by the whole scene.

Shortly thereafter Max was finally brought back to the OR, five hours behind schedule. The nurse and Max were no sooner out of sight when several doctors came out to the waiting room; this is never a good sign. It seems Max’s blood results had just come back and his Coumadin levels were dangerously high. Max had such a high level of blood thinners on board that they were not going to be able to go ahead with the procedure for fear of a bleed out. It only got worse from here. The surgeon told me this could be reversed with blood products but this would take time and the anesthesiologist couldn’t be bothered to waste her time with this part of the plan. So up to this point Max had both a nurse and at least one doctor who couldn’t have cared less about him or his level of care. Although the surgeon wanted to continue with the new plan he could tell the anesthesiologist was not on board so he decided to simply put a band-aid on the problem by shocking Max’s heart back into rhythm. It took a total of about ten seconds; we waited all day for a procedure that took less than a minute and would not be definitive.

The moral of this story is that our first attempt at this procedure failed for too little blood thinners, the second for too much. Moreover the second failure was due, in our minds, to actions that came too late. If the nurse had drawn Max’s blood when we arrived in pre-op at 10am they would have had time to reverse the levels and proceed as planned. If the anesthesiologist had not been worried about being late to whatever else she had to do we still could have finished up yesterday. Instead we’re on borrowed time awaiting the inevitable, a third trip down to PCH to try it all again.

So although the whole experience was frustrating and emotional I need to thank the surgeon and our cardiac nurse, they were both stellar even in light of the fact that they too were just as frustrated as we were by the whole series of events. In the end the one who will suffer the most from all of this is Mr. Max. I still don’t know how I’ll convince him to go back for a third time…..

2 comments:

Ruba said...

And the staff was too oblivious if you ask me. What a wasteful and stressful day for Max and you guys. Your intuitions about not having it done at Hopkins were a accurate.

Angela said...

Hey Patti.
First of all, after reading this posting, I was livid. Max should not have had to go through this. Hindsight is 20/20 but, if this nurse was as bad as he sounds, I would not have let him go near my child, let alone touch him. You should have him written up. He shouldn't be practicing, let alone with children, if he can't handle it. Again, because I've been there, when things seemed out of control, I would have packed Max up and left. I understand that this is a very important procedure but this hospital or wherever you were, sure didn't treat it that way. Stay with your instincts and see the people you know will help Max and are on the same page as you and your husband.

We are having trouble keeping weight on Timothy. He's only 56 lbs on a good day. Lost weight. Took him to a well respected metabolic doctor. Duh!! Only thing he could think of is put a feeding tube in. And what do we put in the feeding tube that doesn't contain soy. (Timothy is highly allergic to soy) Duh I don't know. Wrote him off. Go with your gut girl, and don't let anyone near Max that isn't compassionate and can't do their job.

Wonderful job on the blog. I didn't know you had one up or Max's history. Great job! Any problems, you can find me on facebook. Happy Thanksgiving to you and your Family. Love, Angela