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Archive for June, 2015

Fingers crossed.

We will be going home tomorrow. After Ben threw up all of his morning medicines, they decided to take him off of one diuretic which means that they wanted to watch him one more day. So we have tried to make the best of it. 

 
We went and played arcade games on the 16th floor. I taught him how to play space invaders.  Poor guy thought that it was a little antiquated. I told him that it was pretty advanced technology for me when it came out! So he had some fun before we came back to his room and got ready for bed. 

So fingers crossed, we will go home tomorrow morning! 

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At the moment we are stuck here for another day. The doctor thinks that with Ben throwing up all of his medicines this morning that it would be wise to stay one more day.  So after the initial disappointment, we are trying to make the most of it.  

 

There is still a slim chance that we might go home but just in case we are here for while he is building some Legos. 

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So all of the signs were good for us leaving here today. We had an echo and X-ray. We heard the X-ray was good enough for us to go home (still a little fluid on the side view). And then . . . 

He threw up. All of his breakfast and all of his meds. So now they are discussing whether this prevents us from going home today. And of course, we still haven’t received the echo report yet. So we pray for a good report and that the doctor will allow us to go home. 

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Long day. 

There is not much to report today. We had a ton of visitors so between the visits there was eating and napping and not much else happened. We were still stuck on this floor until 6:30 tonight when he doctor ordered Ben off of telemetry which meant Ben finally was able to leave the floor. We did do a lot of walking. Ben walked 1.74 miles today. For a boy who just had his heart reconstructed less than a week ago, that is awesome! 

We had a pretty disruptive night last night. He was woken up about every hour for one thing or another. We hope that tonight will be a little less hectic. He is no longer in any I.v. medicines. We requested that he get a break for respiratory therapiat to give him a break. So hopefully a little more sleep will help him out. 

We were finally able to make it off the floor to the 16th floor for some fun. 

  
Plus some awesome visitors.

 
Lots of volunteers who brought around a video cart, a cart where he could pick  free toy, and the best . . . The snowcone cart. 

  The sugar rush was the best part of the  day. He was more like his old self again. 

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Quote of the day

A friend brought dinner to the hospital last night for Chris and I.  Wonderful hamburgers with bacon and fries that smelled divine when they walked in the room. Ben can eat anything he wants, so I asked him if he would like to eat some of my burger.  His response . . . 

“I don’t want to die today. Thanks.”

Good point, boy. Probably shouldn’t be filling his body with all that grease after he just got his heart rebuilt. But that bacon sure did look good. 

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   “Daddy, don’t make me laugh. It hurts.”  

So we are finally settled in our room, Daddy came up to visit. Ben wanted to watch a movie but didn’t care what we watched. So in honor of Daddy, we watched “Ghostbusters”. Listening to Daddy quote his favorite lines throughout the entire  movie made us all laugh. It was good to see Ben laugh. 

Now the goal is to regulate his blood pressure, clear his lungs, pass his culture, etc., etc. Nothing to it!

 

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We received the official word this morning that we are being moved from ICU to a regular floor. But it is 2:00 and we are still here. Apparently there are no beds open on the 15th floor so we have to wait until someone is discharged. Ben and I offered to help someone pack and go home but they said no. Bummer. So we sit here and wait. Or sleep if you are Ben. 

In the meantime, the girls have been having crazy fun with their Aunt Debra. She took them on their first roller coaster ride. 

   This is the before picture where they are a little scared. 
   

I think Ainsley is in shock and may never go on a roller coaster again.  

  
But at least they had fun and got to do something to keep their mind off of their brother. Although I don’t think they wanted to switch emotions from concern to absolute terror! But I love it. I told Aunt Deb that she was now in charge of all high adventure rides!

  

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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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