Tuesday, May 8, 2012

Zach's Story Part III

Some background info on this post: This post was actually a Thank you e-mail sent to all the great moms in the blogosphere that helped me out tremendously sharing their experiences about their kiddos. I'm publishing this message now, just to get everybody on the same page, and as I said before to make things less random. This is how it all goes:

Finally! a cute picture of my delicious boy without NICU background!!

Still, there was no diagnosis or prognosis so we were just given a blank card to decide when we wanted to take him home, if we even wanted that and we discussed, -gulp- do not resuscitate options.Our boy came home with a strange mix of palliative and home healthcare and a g-tube, oxygen tank and a pulse oximeter. I took him to his nursery, read to him “The places you’ll go” and everything felt just right. He was definitely ours. We became experts with his feedings, he would LOVE his bath and massages at night and we were a happy family. With lots of gear, but happy to have our boy with us and we even managed to sneak all his cables into our bed to cuddle with him and spoil him like nobody else’s business.I finally got some time to do my hair, took a long shower and even put some make up on, and as I did just that I finally looked at myself in the mirror and thought: -I got this, it’s tuff but I really believe that I can pull this off. Meanwhile, Zach’s monitor started to beep like crazy. First every half hour, then every 20 minutes, then every ten, then almost every five minutes and then we just rushed to the ER. My baby is not breathing! Is the only thing I managed to say as a bunch of doctors and nurses rushed in to assist Zach, and as I saw the ventilator approaching again, I had to throw away any shame or fear of what would they think; and I had to gather every possible inch of strength to tell that he had a DNR while he was in the NICU, and that we believed that at this point another intubation was not in his best interest. For a split second the nurses were shocked to say the least.I managed to explain Zachary’s big fat medical record in less than a minute and one of the doctors came in, stating what was my worst fear but I knew as painful as it was that it was the truth: He had an undiagnosed genetic syndrome, he was catatonic at that point and his brain was just not sending the signals to his body to perform basic life functions like breathing. They had to agree with me about the intubation, and the nurses were at that point hugging me, bagging him and crying with me, while my husband was rushing to the hospital, and I was signing the Do Not Resuscitate forms.Instead of admitting us to PICU, they gave us a room so we could have privacy. The plan was to stay in the hospital that night, and get his neurologist and a pediatrician for terminal patients the next morning to set up his now official palliative care at home. With all the madness I had forgotten his medicines and his feeding pump so I rushed home to gather what we needed and my hubby stayed with Zach.

1 comment:

  1. .... :( me parte el corazón..... es vivirlo todo otra vez...... no more comments :(


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