The Puddles

 The boy is a rock star when it comes to Connect 4. Sometimes he will let you win just so you will build up your confidence.  

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Well we have officially been here 24 hours. We started off in the ER with their masks and gowns. By the way, Ben says he is smiling under this mask.    
He is waiting for X-rays. 

 It is around 11:00pm in the ER and he is sleeping and snoring. At least he was able to get some sleep in that room. 

   Now we are settled in our room. He has showered and changed into his own clothes. He says he is feeling more like himself. So far he is only running a 99.4. Let’s hope that it stays there. 

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We are on day 14 of Ben having a fever. He has been running a fever every evening of 101. Until yesterday. 

When we arrived at the ER he was running 102.5, so that eventually got him admitted to a regular room. We finally got settled in his room around 2am. They put him on Vancomycin and Zosyn via IV. They are broad spectrum antibiotics to cover all of the bad bugs that could be causing this while they wait for some of the cultures to come back. So the poor boy was woken up all night while they changed out his meds, flushed his lines, checked his vitals, etc. It has been a long night. Around 5am, he started running a fever again of 102.8. So him getting a second fever after Tylenol is a new symptom. 

This morning we have met with three teams of doctors. Infectious disease, cardiology, and Dr. Fraser’s surgical team.  Each one has said, “Ben is a puzzle and is really making us think. We don’t know what is wrong with him but clearly something is wrong. So we are going to work hard to figure him out.”

Nothing obvious or the typical bad bugs (like Mersa) is coming up positive so that is a good sign and yet . . . It still means that they have NO idea what to do.  So this is each team’s plan. 

Infectious disease is looking into some of the more rare viruses that cause fever, headaches, and dizziness for this long of a time. They are running more lab tests, throat and nasal swabs, and a possible cat scan. They are also considering stopping some of his medications because in rare cases they can cause fevers. They are also considering autoimmune diseases like lupus, rheumatoid arthritis, etc. And asking five million questions. 

Cardiology is looking at possible heart infection around the new valves, fluid buildup around the heart or inflammation of the pericardium. They are wanting to do an esophageal echo to take a closer look at his heart. And then run their own lab tests. They are going to move him to the 15th floor (which is the cardiology floor) to keep a better eye on him. His lab work came up with increased inflammatory markers. Sed rate, c reactive protein, and something else that I didn’t catch are all elevated higher than they were since right after his surgery. Their plan is to do a regular echo today and an esophageal echo tomorrow since he has to be sedated for that. If nothing comes up with the echo, then they are going to treat him for postpericardiotomy syndrome. Since that requires long term NSAIDs they will consult his renal doctor to see if they can do it or possibly try steroids. 

So that is what we know. Ben does not feel well. He is zoning on tv pretty good this morning. So at least he has a way to escape (at least in his mind) all of the questions, discussions, and pokes.  He is not happy about being here but wants to feel better so he is tolerating everything and is still being polite to all of the medical staff who come to see him. But this stinks. I hate this. I am really beginning to resent this place. And I especially hate that I am not allowed to think past tomorrow. One day at a time is all we are allowed to have. We know that they can find what is wrong and fix Ben but we wish the answers would come easier than they are. 

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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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