Archive for June, 2015

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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The poor little man had a rough day today. After he was finally extubated this afternoon, he started to feel nauseous. Then his blood pressure crept up high. Followed by his pain. All three of those things effect each other, so soon it became a snowball that couldn’t stop. He threw up off and on all afternoon so he couldn’t take some of the medication for his blood pressure and pain because they were both oral. They finally gave him zofran (magic drug for nausea). He was able to take his blood pressure medicine but later when they gave him his pain medicine it all came up. And you can imagine the pain and pressure  that vomiting puts on your chest. So the afternoon was a little rough. By the time Chris got there, I felt like I was the nurse giving the report at shift change. 

There were dozens of doctors who came in and out today examining Ben, giving reports, and discussing options with their colleagues. I heard words and phrases today that I would Google after they left the room. Like “his creatinine is high”, “he is tachycardic.”, “arrhythmia”, “bolus”, and “riding the vent.” I can honestly say I learned a lot today. 

By the end of the day I can say that Ben still had a successful day. He is off the vent and more alert. That is still all positive and makes for a good day. I pray that he rests well tonight and gets ready for another busy day of recovery tomorrow.  


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Good news.

His breathing tube and gastric tube are out! He is even smiling (this is him smiling at the camera)! He is looking more and more like our BenBen. He is even asking to watch tv, so you know he is one step closer to recovery! 


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Ben is still on the vent, but he is trying to breathe on his own in between the vent so that is a great sign! He has asked for water. Of course, I still have to work on my lip reading skills to completely understand but I think that is what he said. Either way he appreciated the nurse wetting his lips and rinsing out of his mouth. His temperature is coming down slowly which is great! And his friends(George, Bear, and snake) are still looking out for him and making sure that he is ok. The goal is still to get him off the vent by the afternoon so we hope for that by tonight when Daddy comes for the night shift!  


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 He has a steel grip on my hand. But he doing well, as I type on my phone with one hand! The hope is to get him off of the vent today.  He has moments when he is alert but they are still keeping him pretty sedated. My parents are here so that we can always have two people here holding his hand and keeping him comforted. Daddy had gone to Aunt Sarah’s house  for the day to sleep, and Mr. Jeremie is sleeping in the waiting room so he can drive safely home.  We pray for a good day. 

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First Watch. 

  George, Daddy, and Mr. Jeremie are watching over Ben tonight. More goodness and blessings flowed over Ben tonight when Gill, his nurse after the first and second surgery, met us at the bed to take care of Ben once again. We love seeing familiar faces that know and love our boy and who will take excellent care of him. 

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We just met with Ben’s surgeon, Dr Fraser. After nearly 12 hours, Ben is finally done with surgery. 

He said when they looked at his heart the aortic valve had drawn up on itself and was not repairable. He said that the heart wall had thickened significantly (yuck) but that there was not much to the sub aortic membrane (yeah).  He also said it took a while to get to the heart due to all of the scar tissue that he had to cut through to get to the heart to look at it. 

He said that the best option was the Ross procedure. He cut out the aortic valve and widened the area for the new valve to be placed. He then removed the pulmonary valve which is tricky due to its placement in the heart. He put the pulmonary valve in place of the aortic valve and then used a 21mm donor valve to replace the pulmonary valve. He said the 21 mm valve is an adult sized valve. 

Ben bled significantly. They went through all of the blood products that we donated and a lot more. Dr. Fraser felt the bleeding was mainly due to all of the stitches that they placed today. Ben will be kept sedated and intubated all night in order to keep his blood pressure stable. Hopefully they will take him off of the vent in the morning. But we will wait and see. 

The best news of the day is that Dr. Fraser expects Ben to get 10 years out of this repair!!!!!! Praise God!! We had expected to be doing this again in just a few years. That was the best news ever! We had totally not expected it, so we were overjoyed. 

So the most difficult part is behind us but we still have a ways to go. We ask that you keep Ben in your prayers and thank God for the surgeons and medical staff at Texas Children’s hospital.  

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