The Puddles

The doctor called and is sending Ben back to Texas Children’s hospital ER to be looked at for his unrelenting fever. We had hoped to wait until the morning after being seen by his pediatrician but no. We pray for answers, a short visit, and no fever. 

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It has been good to be home. Slowly our home is getting cleaned and put back together after two different camps, children staying at two different households, and two weeks at the hospital. It is taking us a while and we are certainly taking it slow. But we are getting there. 

As I was cleaning, I realized that our attention has not been focused on our home. Our children have resorted to making their own home repairs. 

  
Apparently the toilet tube bar broke. But they fixed it! 

Today Ben and Ainsley have been in creation mode. The VBS leaders sent home a box with all of the crafts in it for him to make. Ainsley showed him how to make the pillow and necklace this morning.  

 
And then he had a visitor. Ryan came over to visit.   

Ben got to show Ryan all of his Lego creations. Then he and Ryan tried to figure out how long it would take to build the star destroyer that he received.  There was some debate on it. Ben thinks it would take a month, and Ryan encouraging him that he could build faster than that. Either way, Ben enjoyed the visit. 

Now Ben is sleeping. He has already started running another fever today. So we called the cardiologist as instituted after the hospital discharge. They want Ben to go to the pediatrician tomorrow morning and have another set of eyes put on Ben. And then if he still runs a fever tonight, cardiology wants Ben to go back to the ER tomorrow. Really? To do what? That was the general cardiology desk at TCH who said they want Ben to go back to the ER. So hopefully Dr. Altman, his regular cardiologist, will call us back and have a different answer for us. Until then, we will see the pediatrician tomorrow morning and see if she can come up with an answer to why Ben has run a fever for 13 days. 

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We are all together. All nine family heartbeats are under one roof (2 lakes, 3 puddles, 2 hyper pseudo children (dogs), and 2 minions of Satan (cats)).

We had family movie night last night. It was so much fun to hang out together and laugh and applaud at the good parts. Today I woke up to kisses from Ainsley as she headed off to art class. Then headed downstairs to great my early bird Ben (who wakes up with the sun) who was busy building more Legos.  

That boy is so funny. Yesterday he tells me that he doesn’t know what to eat these days so he has been waiting for me to make it for him. Dad joked with him that he is so used to the magic meal tray showing up with hot and cold food on it, that he doesn’t know what to do with the freedom. He is slowing getting used to making his own breakfast again. 

Ben is slowing getting used to his new medicine routine. He has been taking medicine for most of his life but for the last five months he was able to greatly reduce his medicine to just stomach and allergy medicine.  Now he back up to a large amount again. 

  We know people who have to consume a lot more. But it is still something for Ben to get used to. 
A true sign that life is returning to normal . . . The girls were getting on each other’s nerves. Perfect.

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  Almost all of my chicks have returned home, and the oldest one arrives tonight. Snuggles are good! 

Ben continues to run a fever but it has not gone higher than 101.4.  He continues to build his Lego kingdom and we are working on a way to display his creations in his room since he has created so many.  Dad says that he will make it his Saturday project. 

Ben and I wish we could go to VBS with Dad, Ainsley, and Madie tonight, but that would unwise. So we will just be with them in spirit. Being quarantined to our home is still better than being quarantined to a hospital! 
  

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they can’t change their mind now!  

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Finally for the second time in a  8 days, we are going home. The doctors have collectively agreed that his fever is either caused by his heart surgery or a virus. But with either diagnosis they would not treat him in the hospital. So he is going home to run a fever in the comfort of his own bed.  Ben and I were hugging, crying, fist bumping, and high fiving all while the team gave us the wonderful news. 

We only have to call if his fever goes really high or his symptoms change. And then he might have to go back. And of course, we have to call if he still has a  fever on Monday.  But we get to go home to heal!! 

His shoes are on. His bags are packed. We are waiting on the wheelchair to take him downstairs. And the we are out of here!!!!

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So this morning he finished his Lego set.  

 And then he started on email. I taught him how to set the iPad to read his emails to him and then how to use the talk to text feature. He is having so much fun with all it, but he hasn’t quite figured out about punctuation. So there may be some emails coming that are all one sentence! 

  
All while we wait for the parade of doctors to come and check him out. He has seen two and now we wait for each team to come back and report what their plan is for the day. 

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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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