Meltdown

Fear. The fear now is intense. We are facing the biggest fear of every parent...the fear you may lose your child.

I try to silence those fears - the fear of planning a funeral, the fear Sydney's generous gift will be for nothing...but the fears are real. It is like a game of tennis constantly smashing the fear down and another ball being hit at you.

Yesterday as we are moving to the ICU and learning more about rotating doctors and germy public restrooms, I say to the nurse, "Do we really need to go?".

She replies with a firm, "You can't stay here." While I am sure not intended, at that moment it feels like we are being kicked out from the great care we have recently encountered in the bone marrow unit. I can feel the anger raging inside me but know I may explode so I go silent.

They give me a tour and the rules of our new home...a public restroom where all parents and other patients would go, the public shower, eating can only be done in the public eating area where I see another parent with cold symptoms and a runny nose. It is everything we are trying to avoid.

We then go back to the room and in walks an attending physician, a fellow, and a resident who will be rotating shifts every few days (more layers, more connection points). The attending physician informs me we need to put the GI tube back down, and he will need platelets before. I respond, "But his platelets are 26 and that's what they were earlier and the BMT (bone marrow transplant) team recommended we not do more platelets because we are trying to keep his fluid levels down so the air in his GI tract doesn't rupture." Once again, I sound more like a medical professional than a mom. Who is on point? Didn't we just live through this awful chapter a few short weeks ago?

The nurse then goes to put the tube down and grabs a sticker called Tegaderm which Jenson is allergic to. He has an allergy band on his tower of pump machines. Apparently Doug and my positions as police officers have been re-instated.

The accumulation of fears causes meltdown status which ends with me saying, "I'm tired and don't want to play doctor anymore. I just want to be a mom."

I send Doug a text, "I'm not happy."

Doug goes into protection mode and calls the BMT team. My sweetie is protecting his family. Doug has his meltdown too.

The BMT team calms our fears as best as possible assuring us they are still the primary people on point.

They put the GI tube down again (without giving platelets). It is helping. I leave for the evening distraught and exhausted. Where is rock bottom??

The first thing on my mind in the morning is my sweet little boy. Doug gives me the update:

- Jenson ripped the GI tube out again, so now has arm braces to help restrain him.
- He is retaining water and his lungs are starting to fill up with fluid so he needs breathing treatments.
- His kidney functions are elevated so he may need help there also.
- There is a very slight improvement in his pneumatosis.

The BMT nurse tells Doug, it is going to get worse before it gets better. I can't believe rock bottom is still to come.

To avoid the germ filled family room, I make a PB&J sandwhich for lunch to smuggle into the room so I can eat it when the nurses aren't looking.

When I arrive Jenson looks awful. He can only mubble words now, can't sit up, and has his arms restained in addition to all the other issues he had yesterday.

This sucks. Really, where is the mercy?

I tell Jenson, "Keep fighting. You are going to get better and be running in the yard with your sister soon." He answers with a barely audible, "Ok."

Kristin