Sunday, December 9, 2007

**Updated at the bottom**

The good times just keep a comin'. Sh.awn now has traces of blood in his stool. They don't know why, but it is there. The doctors are "keeping a close eye on it" and waiting for more before they do anything. They did say that this couldn't be from the surgery (duh) so that means that something happened in the NICU itself. When asked why they aren't being more aggressive to find the cause of the blood in the stool, they down played that it was even there. That is the pattern. They tell us that something is going on in an off handed kind of way just so they can say that they informed us. Then when we press the issue, they say that it really isn't anything significant. When I stress my point that something that is new IS significant and deserves investigation and not the wait and see approach, I am being difficult. They stop talking to me and address only Isaac. I am not being unreasonable, nor am I being combative. I am just questioning their decisions, and they don't want to deal with me.

Looks like both boys have bacterial infections (same bacteria in both of them) from their intubation tubes. Hmm...wonder how that happened? I am so sick of the "I don't knows" and the blanket excuse that they are premature and this is how premature infants react. I might have believe that an infection was just a freak thing if one of the boys got one. But both? And the same bacteria? Give me a break. So you tell me that a collapsed lung is a preemie thing? You're saying that an infection from a tube is a preemie thing. No. These are things that happen because of sloppy work.

This is a teaching hospital. I struggle with that, too. Being a teacher myself, I understand the need for hospitals like this. Students need the opportunity to practice what they learn. I just don't want them learning on my babies. And the knowledge that many of the doctors I deal with are learning makes me feel like I need to ask even more questions about the babies' care.

Sadly, the attending in charge of the NICU doesn't make me feel any more confident in that place than the interns, residents, and fellows. I did tell her (the attending) that I would like the opportunity to speak to her supervisor on Monday. No one with any "power" is there on the weekends. We'll see how much work it will take to make that happen.

If the NICU life is so hard for us, what must this experience be like for the poor families without education or insurance or both? Both Is.aac and myself have good insurance and don't need to worry about the cost of all the care the boys are getting. I can't even imagine what the NICU care will cost. We are educated and do our research on what is going on with the boys. We come prepared to talk to the doctors and nurses with questions. I take notes on what we are told (mostly now so I can tell the who said what) and check dr. google about what they tell us. And still we are struggling maneuvering through all of this crap.

I really do think that this hospital and the staff are not used to dealing with people who ask questions about their child's care. They all get flustered and defensive. The more pointed a question is, the worse they are.

I am still pushing to have them moved back to our original hospital. Shit, the original hospital can give the boys just as many infections and collapse their lungs, too, if that is what this hospital is worried about. We don't want the boys to miss out on all of this excellent care or anything. At least then I would be close enough to visit whenever I wanted. (Isaac didn't think that my arguments should include that last little bit, but I am so tempted to use it anyway!)

***************

Thank you for the comments everyone. It does make me feel better to know that I am not just over reacting and that you all would do similar things. Plus, you are giving me valuable advice on how to proceed. I do appreciate it and please keep suggesting things!

**************** Updated

In response to a comment by the Madeira Triplets:

God, Jody, this scared the crap out of me! We called to ask about NEC. They assured us that they had done four clinical tests and ruled it out for now. They will continue to evaluate Sh.awn for NEC, though. I will go more in depth about it with the doctor tonight when I see the babies. I swear if it isn't one thing, it is another.

I had the feeling that there was a reason they had mentioned the blood in the stool the way they did. Had I been the one talking to them instead of Is.aac, I would have asked further questions about it. It had already rang some warning bells in my head when Isaac told me what they said. Sneaky bastards! Sigh.

Thank you so much!

7 comments:

  1. Stacie, is there a chance that the blood in the stool could be necrotizing enterocolitis (NEC)? I'd ask the docs about this. If so it needs to be very closely watched. It's when the intestinal lining becomes damaged/destroyed due to a bacterial infection, I think. It's really suspicious too that both babies got the same kind of bacterial infection...do they have the same nurse?

    You know, at this stage I'd talk to the NICU director--maybe that's the attending's supervisor? Most of the time they are very good and very interested in making sure that the things you bring their attention too are taken care of. I'd make a laundry list of complaints and give him a call. This is one thing that really worked for us.

    Keep on plugging...you are not insane or a bitch, you are a wonderful, strong, capable mother doing what needs to be done to advocate for her children's welfare. I really look up to you for your dedication and will-do attitude.

    ReplyDelete
  2. I am so sorry you are all having such a hard time. I wish there was something I could say or do, but mostly I just wanted to offer support and say that you, your husband and your baby boys are in my prayers.

    ReplyDelete
  3. Whew. I was terrified and holding my breath when I read your post the first time! I have NEC on the brain lately since I know a triplet mom whose son died of it at the same time my boys were born and it just moved so darn fast. If NEC is one thing, it is readily diagnosable, and you are in the clear if all four tests were fine! It is also something that NICUs watch like hawks for.

    In another vein, the MOST frustrating thing in all of this is that these things can happen from some known cause or seemingly without any cause. When I was having all those pregnancy issues around week 15/16 and they thought that I had a viral infection that might terminate the pregnancy, they tested my blood for all kinds of viruses and genetic things--and nothing was found, and today everyone's perfectly healthy. But for 10 weeks it was total doom and gloom. We never did find out the cause, despite all the tests. The blood in the stool might end up being the same thing. In the meantime, all we can do is ask questions and advocate, advocate, advocate! You're doing such a fabulous job.

    We make the move to Indiana this week and will be driving from Boston to Bloomington with 3 kids and 2 dogs and 2 cars. My new e-mail is jmadeira@indiana.edu...I'm always available to talk if you need!

    ReplyDelete
  4. I sympathize with what is going on with your boys and hope all improves...just be cautious not to alienate yourself from those in the NICU..you want them to feel totally comfortable talking to you. (Even if you think they are idiots) Just my 2 cents..all the best

    ReplyDelete
  5. I commented a long time ago and wanted to read what the triplets said so here I am..and NO COMMENT by me. damn. you'd think this was a teaching/training blog site or something :)

    Whatever I said was extremely meaningful and supportive as well as cautious and encouraging.
    Just wanted you to know ;)

    ReplyDelete
  6. Did it ever occur to you that it's YOU who put your kids through this? YOU were the one who couldn't accept that Nature didn't want you to have kids, and instead of just adopting a child in need, you went ahead and did IVF, which is notorious for creating babies with all kinds of difficulties.

    Whatever "dread" the medical staff feel toward you is well-deserved, as you clearly are an insufferable cunt. You have no right to be bitching and moaning to the trained medical professionals who are taking care of your babies as they undoubtedly know better than you do.

    Whatever problems your babies are going through are a result of your selfishness.

    ReplyDelete
  7. I am reading through all your posts to come to date with your blog. You are extremely courageous. HOW IS IT POSSIBLE that this "anonymous" has posted things like this and nobody has stood up for you?!?!? Or that you havent said something?? OR they havent gotten struck down by lightening yet?!?! Terrible people should not speak. Ever. to anyone.
    That is FILTH and HATRED and IGNORANCE.

    ReplyDelete

Please share some love!