This blog is a chronology of our story and should not be used as the basis for medical treatment or diagnosis. From time to time, you will find links to other websites that we have found helpful, however we offer no guarantees as to the accuracy of these websites. At all times, please use your own good judgment and the advice of qualified medical physicians and specialists.


Monday, April 12, 2010

Let me take a step away from our timeline for a moment to tell you about one individual who made a remarkable difference to us during this stressful time. She was the nurse that was taking care of Michael on the day Dr. 'S' told me that Michael needed a trach. Let's call her Nurse 'B'.

Nurse 'B' was a young nurse, but not fresh out of nursing school. She was very calm, but friendly, and confident enough in her skills that she wasn't afraid to admit when she didn't know something, nor did she feel the need to put herself above me, as Michael's mom, in some sort of battle over who was in charge. So many medical professional feel the need to do this, but she did not. Even all this time later, she stands out for that choice

As Nurse 'B' said to me much later, the day she met us, she became invested. You don't watch a Mom fall apart, then pull herself back together, then gear herself up to make a life-altering decision for her family and not become involved. She got a backup to watch her cases that day, and she came in to the meeting with the pulmonologist with me. From that moment on, she was there for us. If she was working, she was working with us, and if she wasn't, she was keeping tabs on us. She was a great comfort to me, not because she was emotional and huggy, but because she was not rotating in and out on us. She was simply there, and she kept tabs on everything so that she was always current. She always knew what was going on so she could answer questions, find me answers if she didn't have them, and -- yes -- hold my hand if I needed it. She was imminently professional and at the same time altogether accessible. When she was on duty, my husband and I truly felt that we could let down our guard and the world just might not fall apart at the seams.

I will never forget her, and I will never forget her name. There are a lot of nurses I will never forget, some good, and some bad, but somehow the names of the bad ones have slipped away. Her name, and a small handful of others, have stayed with me. We are actually looking forward to finally going to a NICU reunion so that Michael and I can see her again.

Now, back to our story.

We consented to having a trach tube and a Gtube placed in Michael's trachea and his stomach in one surgery. The surgery was late one night, starting at nearly 8:00, if I recall correctly. My husband and I ... let's finally give him a name, shall we? He wants to be called Adam, so we'll go with that. Adam and I sat in the windowless NICU waiting room, waiting for our three week old son to return from a surgery that would change his life and ours. I have never felt such a state of helpless anxiety before in my life, although it was a feeling I would grow very accustomed to in the coming months.

Michael's trach surgery was on a Tuesday. Our original Carepage sponsored blog began the following Saturday with a little bit of a recap. I will stop my very lengthy introduction to this story here, and let the original blog take over. Hang on tight, though, because the next post has some shockers. Before I hand you off to my younger self, I need to explain a little bit about our Carepage and what we were trying to accomplish.

Basically, we started the web page because we were exhausted from calling five or six or more people every night when we got home from the hospital. We decided that for our own strength, we needed to just explain the day's events once, and whomever wanted to know could read it. We never intended to write a contemporaneous "blog" about our emotional experiences or our feelings. We were primarily focused on transmitting information to people who wanted it. I think this approach becomes readily apparent in the very first post, where I try to recap four days of extremely emotional events into 1000 words or less. (The original Carepage software had a 1000 word limit that was later eliminated.)

So, please don't make the mistake that some have made in thinking that Adam and I were suffering from Pollyanna syndrome, and putting a happy face on everything. We were communicating information as best we could, without trying to scare or upset anyone needlessly. We were not trying consciously to record our emotions. From time to time, though, you will see a completely emotional discharge, sometimes happy, and sometimes sad. At those moments, the emotions were so big that they were beyond our ability to reduce them to clinical words and facts. In truth, we were emotional all the time. We hugged, we laughed, and we cried nearly every day. For much of the time we felt lost and hopeless, and that is why we are choosing to republish our original private blog on this public website.

If we can help one other family feel less alone ... then reliving these days on this blog is worth it.

Thanks for reading.


Post a Comment

FEEDJIT Live Traffic Feed

  © Blogger template The Professional Template II by 2009

Back to TOP