Archive for June, 2015

Ok. So the night shift (Daddy and Uncle Will) did good work last night. They got his central line pulled and off of his supplemental oxygen. They even brought Aunt Sarah in as a ringer to get Ben up and walking.  So hats off to the night team. Of course, I have to come in and make nice with the nurses. “Yes. I promise not to push buttons. Yes. I promise not to make medical decisions (like taking off his oxygen just to see what would happen. By the way, it did work and it was a good decision) without talking to you first. Yes. I promise not to show you how to use your own equipment better than you can (When they took Ben’s temp, it came up as a fever. But they had it set to auxiliary which adds a degree. Chris fixed it for them.)” 

Ben is still bradycardic this morning. While he is sleeping, his pulse drops from the 70s to the 40s-50s. They think it is because the blood pressure meds are catching up to him. But they will monitor it closely to see what happens. The good news is that we will hopefully still get to move out of ICU and into a regular room. Yeah!! All signs are pointing in that direction. Ben will be thrilled to hear that. 

When he wakes up . . . 


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Look at him go. 

After seven laps . . . 


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So even though we have been up and walking, we will be here in the ICU at least one more day.  Ben isn’t mad, he says. He is just really really sad. He wants to get out of here so badly. 

He is doing everything that the doctors tell him to do, but his face hasn’t made a smile since I asked him to smile for the camera earlier today. He is just not himself. 

The girls came up today to see him and they both tried to cheer him up, but nothing worked. 

For the girls it was a real experience. If you know our family you know that we have a rule about children going to the hospital. They don’t. The only way to go is if you are so sick that you need a hospital.  So first the girls had to see a Child life specialist. That is a hospital rule.  


Then they got to go see Ben. I think Ainsley was the most excited. She had never been able to visit Ben in the hospital before.  


Ben blood pressure has been a little crazy today. But it is getting better. They increased his blood pressure mess and his diuretics. His lung X-rays are getting cloudier each time, so they worked hard to get it better by the afternoon X-ray. But our efforts (walking, pounding, etc.) haven’t started working yet. They will. So between a cloudier X-ray and the fact that Ben got dizzy and dropped his pulse suddenly while lying in bed means another day in the ICU. I think it is just because he is so darn cute . . . I mean handsome. Or the awesome super hero Jammie’s that all of the staff comment on. They just like to have Ben hanging around another day. 

Whatever the reason, Daddy and Uncle Will are doing the night shift together tonight. They are planning all sorts of antics to try to cheer Ben up. If anyone can do it, it is those two. 

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Morning report

Even though the night crew worked hard, they weren’t able to get Ben up and walking. Ben spiked a fever last night and they weren’t able to get him completely off of oxygen yet. 

So this morning the new goal was to get up and walking. The respiratory therapist came and beat his chest to “wake up the lung.” He worked on his breathing exercises all day yesterday but he is still struggling to get all of the junk out of lungs.  


Then we got Ben up and moving. So he did it. Twice. Awesome. 

He got his arterial line out. So we just have two more I.V.s to go. They are increasing his diuretics and decreasing the amount of liquids he can consume. As long as his next X-ray looks better, he is getting moved to the 15th floor (which is the cardio-vascular regular floor). He really wants to go to that floor. Being on that floor means getting to play and go to all of the fun places in the hospital. So that is the goal!  

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Afternoon progress. 

He is smiling! His chest tubes are out. He even got to eat a little applesauce. His blood pressure is still crazy high and he is working on breathing with out the aide is oxygen for small spurts.  But you can’t beat that smile! 


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So we didn’t quite get to walk, but he stood for five minutes and then was ready to pass out. But he tried! He really wanted to walk but the effort exhausted him.  


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By the time I arrived this morning, the night shift (Dad and Mr. Mineri) had Ben moved to a new room and he was talking better. Good job night crew! 

Now he is resting. We are still trying to control his blood pressure. But he is resting now. Which is good. And he really wants to move around in the bed (although every time he moves he promptly falls to sleep again. Kind of cute. Especially when he tells me he can’t sleep even though he is just waking up from a 30 minute cat nap). 


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