The Puddles

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!!!! 

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! 

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. 

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. 

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. 

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? 

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. 

During our first hospital stay, Ben had a view of the astrodome. Pretty cool. 

  
Now the second time, we had a different view. So tonight we were really wanting to see the fireworks at Herman park. There are a few really tall buildings next to us so we weren’t  sure if we would see them or not. 

 But we could see all of the high fireworks. Ben and I talked which ones we like the best. The nurse came in to give him more medicine and take more blood, then he saw our view and joined us in the running commentary of how awesome the fireworks were. He liked the same ones that Ben does, the multi-colored ones. 

Ben’s running commentary was in stark contrast to an hour earlier. He started running a fever again. This time he felt so badly (dizziness and pounding headache) that he asked that I get the nurse. That was a change.  His fever was 101.7. Before they would give him medicine, they took a lot of blood. Hopefully this fever heated blood will give them some answers. 

In the meantime, I know I will pray for answers. The iv medicine is burning his veins.  The VAT team was called again this afternoon to put a new iv in. He has blown so many IVs that he is running out of places (that is just my humble opinion. I am sure the VAT could find a new place). They use ultrasound to find a good vein and then to guide the needle. It is impressive and Ben doesn’t mind it at all. 

But we sure would like to know what is going on. So we lift up more prayers. 

Firework Update:

We were wrong about the fireworks. The first ones were cool, but then the real ones started. 

  
We could actually hear them and see them. They were so close and bright that the reflections off of the buildings made them even better.  Of course, Ben had fallen asleep, but I gently woke him up and we watched for about five minutes until he said thank you and fell asleep on my shoulder.  At least he went to sleep with a smile on his face. 

Ben started running a fever in the emergency room while we were waiting for our room. So at least we had doctors who were able to witness the fever. Besides dizziness during the fever he has no other symptoms, and he says he feels fine (at least fine for a kid who is 10 days out from open heart surgery). 

So they are running tests. His surgeon even waited around yesterday evening to see the Echo and other test results. The only anomaly that has come up is that his inflammatory markers in his blood work has come up elevated.  One doctor said that this was an indication that something was going on, but the doctor this morning said that this was typical of someone who just had major surgery. So who knows. 

They have him on three iv antibiotics while they try to figure it out. If he runs a fever while on all of these drugs, then they know that they are dealing with something unusual (according to the morning doctor) . So hopefully he won’t run a fever. 

So all can do is wait. What does one do while they sit around and wait for test results during a holiday weekend? You watch tv channels that mom never lets you watch at home. You walk. You practice your breathing using your incentive spirometer. You pick out new movies to watch. You walk some more.  You color. You put a list together of stuff you want Dad to bring you. All before lunch. 

He is not happy about being here, but we are trying to make the best of it.   

The girls were stolen/kidnapped/ran away willingly with the Brown family. I wasn’t there, but I the scenario that I picture in my head goes like this . . . 

Mr. Brown enters the house and says to Dad, “Would you like —” And Ainsley who was upstairs in her room 50 feet away senses the presence of her second family and like the wind she runs past the two men while shouting, “YES” and goes to climb in his car before Mr. Brown has a chance to finish the sentence. 

I don’t know if it happened that way or not, but it certainly sounds like Ainsley.  In the meantime, we don’t know what is going to happen except we are here for 48 hours. Hopefully we will know more this evening during those rounds and we pray for no more fever. 

We are currently sitting in a room in the Emergency Center at Texas Children’s Hospital waiting for the doctors to admit Ben to a regular room for 48 hours of observation while they try to figure out where this fever is coming from. 

For the last two nights Ben has run a fever. Only in the evening around the time to give him his medicine at 9pm. Then we would spend the next hour taking his temperature, retaking his temperature, changing thermometers, taking it both auxiliary and orally, trying to cool him off to see if he was just overheated, praying that this was a fluke, and then finally resolving to ourselves that the fever was real.  Then we would give him some Tylenol to fight the fever and by morning the fever was gone. We called the cardiology on call doctor both times, but it was our pediatrician that really helped. She called TCH and spoke to the attending cardiology doctor in which both doctors agreed that this was not normal. So they sent us downtown to get checked out. 

So far all of the tests have come back as ok (no changes on the echo, EKG, urine, etc since we left the hospital two days ago).  The doctors have no idea why he is running a fever. He did run a fever in the ICU several days after surgery, but all of the tests from that period came back normal and they stopped the antibiotics. He didn’t run another fever again in the hospital. So hopefully we will get some answers.

Ben is mad that he is back at the hospital. He doesn’t want to be here at all. I can’t say I blame him. Chris is at home washing clothes and repacking bags, so Ben has clean clothes to wear at the hospital again. He will join us tomorrow at the hospital. We pray for a quick resolution to this problem, so we can finish this recovery at home.