Gone Fishin.....

Yesterday I took Jono to see Daddy. His eyes lit up. I included a picture of the moment. Honestly I am not so good at ‘capturing moments’ on film. I would rather just enjoy the moment. But this one was hard to pass up. 

He showed us new tricks. It was so cute. Dreaming about fishing...

Today, I had a family meeting with Dr. Long, Jasmine, the social worker/ nurse as well as Jolene the nurse manager. 

My mom offered to come by and spend time with the boys so Hannah could come with. 

It was so nice having her with me. She keeps me in the safe zone. I tend to be blunt where she tends to soften the edges a little. We make a great team. 

The meeting went....hmmm.  Ok.  The important people on the chess board know our concerns. No one was going to talk us down. We stood our ground...softly. 

But FIRMLY. 

So many things....so many things. It’s just overwhelming to say the whole story. 

The bottom line?  Dr Long is my ally. Jasmine and Jolene are my allies. I have someone to go to if I have concerns. 

David is in the ICU. I think some of the nurses need to be reminded of that fact. Yes, he can push the call button when he is rested. NO he CANNOT push the button after physical and occupational therapy. He needs to be checked on often. 

Yes, the nurses see his vitals at the nurses station. Fine. They do not see that he is gagging on saliva and needs someone to suction his trach and mouth. He needs to be moved often so he is not stuck in the same position too long. He needs someone to closely watch him when they have the speaking valve on because it feels like he can’t breath sometimes. Talking is just as hard as lifting your leg if it has been immobile for 40 days. He is not on a catheter but cannot go the the bathroom on his own. He can’t even walk with assistance to the bathroom. They have ‘puppy pads’ under him for a nice way to put it. The puppy pads need to be monitored and taken care of. Puppy’s need new pads many times a day. 

Yes. I am graphic. Sorry. It’s just the things I am having to deal with that I should not be dealing with. He is in the ICU. And they should treat him accordingly. 

47 days. He’s an ornament. New people come in and get higher priority. The nurse says she will be back in a minute. And she doesn’t come back for two hours. Unacceptable. 

David has become a great mouth talker and I have become pretty good at lip reading. 

Any one who knows David KNOWS he does not fuss and complain. However if he does have to fuss and complain, you KNOW it’s serious. 

I cannot file for medical POA because he is on narcotics, but they can ask him questions that he is confused about and get him to agree with them. 

No. The same applies to them. And we have to creatively make sure his needs are met without stepping on toes. But inevitably ties get stepped on. Sorry. Move your foot, please. 

And so I rant. It’s a heavy thing. We will get through, I’m sure. I know. But we also will not be a doormat, but David’s ally we will be. And that’s that. 

If you have gotten this far and still like me. Thank you very much. 

Much love to our faithful followers because of your concern for David. Thank you so much. It is not always easy to write. I felt I needed to write today since we skipped yesterday. But I am still a bit emotional about it. Sort of. I am not crying. I am just ready. My shield is before me as I stand in front of David. And I WILL stop any unnecessary static. 

Love love

Shelli