Wednesday, June 13, 2012

Who needs a title?

I really don't have any direction for this post... I just felt like writing. Warning: this post could quite possibly be the most boring, bunny trailed, sporatic post yet. Or as Ben would call it - a look into my brain. There have been a lot of thoughts running through my mind today. Everything from Rambo's nurses to an unfortunately clogged toilet in my room. How, for the third day in a row, I'm aware of how extremely thankful I am that Rambo has remained a relatively low key patient.

I walked into the PICU today and saw a room filled with nurses and doctors and the after effects of an emergency of some sort. People talking amongst themselves, doctors making phone calls, equipment being moved around. And amidst it all I saw a little baby laying on the bed in the middle of the room. My heart instantly sank thinking of what the family was going through, what the baby was going through, what could possibly have gone wrong. 

It's weird when I come across that sort of thing. I feel so.... devastated. I can only think to pray for that child and their family. It actually hurts my heart thinking about being in that situation. And then I remember that we were. So many times we encountered the adrenaline and the anticipation. I'm instantly grateful that we are not there anymore and can only pray that we never are again. But at the same time I feel so separate from it. It's like I'm looking from afar but am acutely aware of the feelings within. I see Theodore. Small and helpless. In pain. Hanging on by a thread. Body run ragged by tubes and needles. 

And, hopefully, the sigh of relief that eventually comes. 

I wonder if that deep deep pang of identity will always be there. I wonder if it will ever go away. 

I'm not sure which is better. 

It's been relatively easy to forget the pain. The busyness of life has been a great help in that respect. The chubby, active, 18 month old we have is a world apart from the sick newborn he was. On a daily basis, I don't think about it. I don't think about the past. Not until days like this when it's placed in front of me and something inside me just KNOWS. 

I am ever grateful to God for the work He has done. For His promises. For His peace. Even for this connection that cuts to the core. 

Well....... that wasn't the way I saw this going. :) I'll finish up with a quick update.

Rambo was in a good mood for the second day in a row. He threw out more than a few smiles and played for a while. His breathing was slower today but the tugging was worse than yesterday. His xray remained the same (aka awful) so they decided to not try to wean the vent at all. Overall he had a pretty relaxing day. They tried for labs but not surprisingly were unsuccessful. They may try again tonight. He did not desat with suctioning today which is a huge step in the right direction. 

My presumptions of what's to come: getting labs tonight and a long slow process of weaning the vent over a period of days. I'm hoping he can come off of it quickly, but he is still really oxygen sensitive so we shall see. 

Also, they put him back on contact precautions. This means I have to gown up again. Why? Because of something he tested positive to OVER A YEAR AGO. It's a bacteria that is more resistant to antibiotics so you have to 'prove' that you no longer have it by getting retested. Fine, then why hasn't he been retested???? No answer. Thankfully, they do the nose swab tests on Wednesday so we got one done. It will take several to many days to come through and we very well may be out of here by then but at least the process has started.

Ben had to get back to work so, seriously people, Baltimore isn't THAT far away. Get out here and spend your entire day sitting in the hospital room with me. Actually, it hasn't been too bad. I'm viewing it as a vacation. A sad, lonely vacation, but a vacation none the less.     



  1. This comment has been removed by the author.

  2. Amanda, true empathy is a gift to those you reach out to with a compassionate heart. It is a doubled edged sword; while we can feel so strongly what another is struggling with we somehow wish we didn't understand so well.

    When you look into the eyes of another parent who is just beginning their journey with a special needs child you can see their confusion, grief and desperation. You want to say, "it's going to be ok", but can't. You see the swallowed tears that they are too overwhelmed to cry. You may even cry for them. But most of all, you see how far you have come on that same road and realize that God has blessed you beyond what you could have ever imagined through your own child.

    Praying for Rambo and the entire Taylor clan.