The Puddles

Thank you to every one who sent emails and well wishes to Ben. He feel asleep again tonight in the middle of replying to all of the emails. 

Last night . . .   
And tonight . . . 

  
He is running another fever of over 101. So the VAT team is headed our way to put another iv in. We already have two scheduled blood draws and there could be more. So one poke is better than multiple pokes.  

He feel asleep in the middle of dictating a sentence to me to type (he got too tired to type any more).  He just couldn’t do any more. But he loves hearing from everyone. It really makes him smile. 

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I begged, pleaded, and finally he finally decided to go to the playroom in the 16th floor. As I was signing him in, he found a buddy, and they have been playing since. 

   
 
I knew he would have fun as soon as I got him up here, but it is easy to pull teeth then to get him to come up here. Sometimes you just have to get out of that hospital room. 

We have had some great visitors since we have been here. He totally jazzed on the Lutherhill swag that Matt Kinsvatter brought by. 

  And although we did try to bribe the doctors with it. John from Safe Kids (car seat program at TOL) brought over mini bundt cakes.  

 Ben really like them! And even better was when Kendra from Lifeline brought me a cold Dt. Coke. She was sent by a friend of a friend who is friends with someone in a biker group. So thank you Bunny for the sweet nectar of the gods.  

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We just saw the cardiologist and she said that she is not ready to let Ben out of the hospital.  She spoke to Ben’s regular cardiologist and they decided that they want to get to the bottom of the cause of Ben’s fever. So they are calling the infectious disease team to take a look at Ben. Dr. Simms said that it will probably be another two days at least. 

His echo today looked good. He has some leaking in his aortic, mitral, and pulmonary valve that they are watching. They are looking in particular at his mitral valve. (That is a new leak for him.) He is also struggling with high blood pressure. They are increasing his blood pressure medicines slowly to try to get his pressure down to a normal range.  She said that sometimes, in rare cases,  lasix causes a fever so they are taking him off all lasix medicine. 

So we are stuck here today. I am working on my local connections (aka the Lake-Wallace household) to borrow their washing machine to wash Ben’s clothes. He is out of clean pajamas.  I have a game plan to find fun things to do here at the hospital that we haven’t done yet. He and I have been having a record marathon Connect 4 contest (he is winning). We rented the movie “Space camp” last night. I loved that movie growing up. He liked it too although the computers are completely antiquated on there. 

By the way, we did try bribing the doctors to let us go . . . 

  
It didn’t work. 

My family suggested boxes of Thin Mints as bribes but I don’t have any!! I will work on my scouting connections to see if I can get any. But Ben doesn’t even think that will work. 

I even packed up everything, so we were ready for departure as soon as the doctor said we could go. I fixed his hair this morning. He took a shower so that he looked and smelled really good for the doctors. I charged all the electronics so we had full charges for the ride home. I even ate the last of my dinners and drank the last of my caffeinated drinks.  We told the custodian that we were leaving today so she didn’t have to clean the room. Knocked on wood. Threw salt over my shoulder and crossed all of my fingers. And prayed. A lot. What else could I do? 

So. We are here. Ben is mad. And we again will pray for answers or no fever. Either way it will get us home. 

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1. Your mom (who is your primary caretaker) ran out of all of the Dt. Coke that she brought. Therefore she is forced to drink hospital coffee for a caffeine fix. 

2.  He blew his final iv. And the nurses aren’t putting another one in right now because  they don’t know where to put it without calling in help. And he is no longer on iv drugs. 

3. They removed his nametag  because his name and all other identifying info had worn off. 

4.  We are down to the final Lego set. After this next one, he will have to find another hobby. Maybe he could start blowing up latex gloves and decorating them to make different creatures out of them. 

5. And most importantly, Ben is willing to sleep with shorts on,  just a sheet to cover him, and the air in the room set to 65 so he can not run a fever any higher than 101.3 (which he started running at 5:30). Because he really wants to go home!!!! 

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We just had a visit from our team of doctors, and this is their current plan.  If Ben runs a fever tonight as long as the fever is the same or better AND if the blood works comes back and is trending better or the same but not worse THEN we get to go home. 

Yes. We will get to go home. I asked the doctor what we would do if he continues to run a fever at home.  She said he will probably run a fever at home. If the fever continues for over three days at home, then we are to call  back. 

So as much as we would like answers, the answer to “why does he have a fever?” will probably never be known. In the meantime, we all agree that we would rather recuperate at home than here.  In order to go home, we pray for  no fever, less fever, or the same fever. And we pray for better blood work results or the same blood work results. Any trend that gets us home! 

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Ben just walked six laps, almost half a mile in ten minutes. His pace was so fast that I had to ask him to slow down (I told him it was for his safety that he shouldn’t walk so fast.)  But I am worn out! How can an eleven year old boy who just had open heart surgery walk so fast? The answer is probably that I am just THAT out of shape. Good for Ben. Shame on me. 

Luckily Ben got worn out after six laps so he came to crash on his bed and check his email. He has loved getting all of the mail and has worked hard on replying to all of them. 

Now he has more emails to reply to and more Legos to build! This boy’s life is never dull. 

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Ben ran a fever all night. So the nurse made me take off all of of his blankets in the middle of the night. And she thought his pajamas were too warm and wanted him to take his pajama top off. I asked Ben if he wanted to take his shirt off and he said no but he was willing to unbutton the shirt.  He was freezing curled up in a ball trying to get warm for the rest of the time. He was so restless. Not sure if he didn’t feel good or was just freezing. So this morning when they checked his vitals and he wasn’t running a fever, he asked for his blanket because he was cold and I GAVE it to him. Of course, then his nurse came in and said his blanket was too heavy and it needed to come off.  I asked the nurse last night if the blanket made the fever worse. She said no but that it will mean that the fever won’t come down as fast after they give Tylenol. 

Trust me. We want to go home. The temp in the room is 66. We are willing to do almost anything. But this whole sleeping with just a sheet while you are running a fever is crazy. But we are trying to follow the rules and do what they tell us to do. God forbid that we parents are the reason he stays here longer. 

But the morning was awesome! No fever. And he got email for the first time!! The first email that he opened had lots of jokes in it and he thought that was great. So I got to teach him how to return an email.  He loved getting all of the emails from people this morning. It helps him keep in touch with the outside world and not feel so lonely.  

  So now he is onto building his Lego empire . . . 

   
 
And we continue to pray for no more fever, or an answer to why he is running a fever. Either can get us home sooner. 

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So our low grade fever has turned into a high fever. They finally gave him some Tylenol tonight after he started running a higher fever. I guess they didn’t need to see if it would go any higher. They drew more blood cultures to see what his fever cooked blood would produce. But so far these tests have all come back negative. We will see what happens this time,  but we certainly aren’t going home tomorrow. 

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So here is the news from our current homebase of Texas Children’s Hospital. . . 

The doctors still don’t know why Ben is running a fever, but they seem less concerned with the why and more concerned with dealing with the stuff that they can control (blood pressure, ins/outs of fluid, etc.) . So they are increasing his blood pressure medicine and decreasing his lasix medicine.  The good news is that they have taken him off all of his antibiotics. No more iv medicines that keep him chained to his bed for hours. The doctors decided today that they want too how high his fever will go without intervention. So he is now running a low grade fever most of the afternoon. We will see what happens. 

In the meantime, Ben is building Legos. Lots of sets. 

And . . . After almost two weeks in the hospital we figured out how the movie thing on the tv works. We watched “Captain America.” Then “Avengers.” And then “Thor:the Dark World.” Do you see a theme? 

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So here is what we know according to Dr. Seery (the cardiologist that has been following Ben since he came out of ICU. 

They still can’t explain his fevers. We will get the first blood cultures back tonight and we will see what that says. In the meantime they are going to work on getting his blood pressure under control (since we’re here, the doctor says). They are going to continue watching Ben for the next 4 or 5 days and see what happens. If he continues to run a fever after that, they may send him home running a fever. It could just be a summer virus. He said that anecdotally they have had a few heart patients who had homographs who ran unexplainable fevers. But that it turned out ok. I asked how long they ran fevers and it was a while he said. So I don’t know where this is heading, but unless the cultures come back with an answer we are going to be here for a while. 

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