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Archive for July, 2015

It has been a busy but laid back day for Ben. No blood draws. No tests. We are just watching and seeing. Will his fever come back? Will his kidneys behave? We don’t have all of the results yet. 

But we had lots of visitors.  Mrs. Vaughn (his elementary school librarian) Mrs. Horton (his first grade teacher), and Mrs. Alman (his fourth grade teacher) came for a visit. I haven’t seen Ben that animated and talkative in a month. I only had to ask him to lower his voice five times while he was talking. He was just that excited. 

Later Ms. Diana came to visit, then daddy joined her. They were heading out on a walk to get some steps in when I left to go see Ainsley. 

I have no idea what the night will bring. He is really worried. We talked tonight about his fear of never getting to go home. He felt like he was bound to get sick because that was his luck lately.  We prayed together before bed. He is sleeping peacefully now. 

We will find out in the morning if he runs a fever tonight and what his blood work will say.  So I continue to pray. God has already answered our prayers by making Ben feel better. Now we pray that this current course of treatment is helpful and will help Ben get home. 

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Dad is holding down the fort at the hospital and probably causing a lot of damage and getting Ben is trouble. And it will probably take me a whole day to get us out of trouble.

I met Ainsley and Aunt Sarah at the Galleria ice rink to watch them skate. Ainsley would like for me to skate but there’s no way I can chance getting hurt. And trust me . . . There is a huge chance of that. 

  

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Today was a little dramatic and crazy. Our heroes of the day are definitely Renna Lange (cardiac nurse practitioner) and Dr. Amy Simms (attending cardiologist).  Ben and I agree that they are our new favorite people. 

Ben’s testing went smoothly this morning. It was an early morning (and a late night before) but we were dressed and ready for the tests by 7:30. Around noon, Ms. Lange came in and said that all the reports had come back except the CT of the sternum and that everything looked great. She said that as long as that final report came back normal than they would recommend oral antibiotics for 7 days and a few more days in the hospital with an end day of hopefully Sunday. Yeah!!! She said they were going to speak to infectious disease and work really hard to convince them of the plan but she wasn’t sure what their recommended plan would be. 

The final CT report came in this afternoon and the cardiology team came to give us the report. Ben was asleep so we stepped outside. Dr. Simms said that all of the tests were normal. She said that they would procede with the previous recommendation and as long as Ben didn’t run a fever on this oral drug we could go home. Yeah again!! When they came in to exam Ben, he was still sound asleep so they quietly listened to Ben’s heart and checked his pulses. When they were done, they covered him back up with the blanket, tucked him in, and smoothed his hair.  It was very sweet. That gesture of motherly love meant the world to me. 

I called Chris and gave him the great news. Ben and I celebrated when he woke up. He was thrilled. 

And then . . . The infectious disease team came in. 

They said that the CT scan of the sinuses and the ultrasound was normal but the CT scan of the sternum showed pockets of fluid buildup around the heart (in the Mediastinum) and aorta. This can be normal in patients who have recently had heart surgery. But that this was the only abnormal finding in all of the tests that were run. So it was possible that there was some bacteria in the fluid that we just can’t identify. She recommended IV antibiotics for three weeks. She would insert a PIC line in for Ben and could go home early next week and finish the treatment. We had stepped outside Ben’s room to talk her, which was good because I was starting to cry. We had gone from one extreme to another. 

And then . . . Dr. Simms walked up.  I had never been so pleased to see anyone. They started talking with Dr. Simms and she stated that she wished they had talked to her first before presenting to mom. It was clear that Dr. Simms was prepared to fight the good fight for her patient. So I told them that I would be happy to go back in the room, shut the door, and let them have a discussion. So discuss they did. The nurse came in our room a couple of times and was able to let us know where they were in the discussions. Finally Dr. Simms walked in, she apologized for everything and then told us they had worked out a plan. He would be put on oral clindamycin. She said that the fluid is not unusual for patients that have just had heart surgery. She was not concerned but was willing to put him on antibiotics to cover him. She also said that they had decided to treat him for postpericardiotomy syndrome. So he will stay in the hospital the next two days to be monitored for changes in his fever and his kidney function (since the treatment for the syndrome is Motrin which is potentially bad on his kidneys). They have cleared the treatment with his renal doctor as long as they monitor his kidney function for two days and it is all ok. The infectious disease doctor also wanted a follow up CT scan but she wasn’t sure about that.   So to be clear, he has to have no fever and good kidney function to go home. If he runs a fever, then we will have to go home on IV meds. That is ok. Ben agreed to talk to his body and kidneys so that they will behave appropriately. I told the doctor that my prayers for no fever worked before so I would pray for that again. We thanked her profusely for standing up for Ben. 

Even Ms. Lange stopped by later on her way home to check on us and told us that when infectious disease told her their plan, she told them that she needed to run it by her attending. Then she heard that they were heading to our room first, so she immediately called Dr. Simms to come and meet with them. Thank goodness for due diligence. 

We are so glad that we are at Texas Children’s so that we have access to so many great and brilliant minds. I appreciate all of the doctors (even the ones who want to put him on IV meds at home) because they are just trying to solve a very difficult puzzle and keep Ben healthy and strong. 

So to be clear to my prayer warriors out there, this is the prayer that we need . . . 

  • Prayers of thanksgiving for the doctors and staff at this hospital
  • Prayers for no fever in Ben. 
  • Prayers of normal kidney function in Ben. 

That will get us home on Monday . . . Hopefully!  

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Quote of the day

“We need to hurry up and get out of here or the girls need to come for a visit, because you keep coming at me with a brush like I am your dolly,” says Ben. 

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It is a little nerve racking right now in the Lake hospital room, as we sit and wait for the results for all of the tests this morning. They are hoping for results by lunch time.  So to alleviate some anxiety here are some positive moments from the last 24 hours. 

   
Thank you Angelton EMS for the giant card and the Legos. He loves it.

 
Thank you Uncle Dave for Oreo cupcake (BTW, he only let Dad have half of the other chocolate cupcake that Uncle Dave brought for dad.  I guess there was a cupcake tax.)

   
 
The boy is patiently waiting for ultrasound tests. He just finished the CT scan and is happy to have the hardest one out of the way.  

   
Ben is building snap circuits and learning about electrical circuits. Crazy. Thank you to Chris’ godparents for sending him this awesome new toy to play with 

Ben is drinking his medicine that smells like rotten eggs. They mix it in coke to he is excited to taste real coke for the first time.  He is an awesome trooper when it comes to taking his medicine. 

 

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Daddy came up for a visit. That was the best part of the day. Ben and Dad got to hang out all evening while I got to leave the hospital for a little while. It gave Ben a break from Mom, and it gave an opportunity for the boys to get some fun in while I was away. They built snap circuits, got some walking in, and won a guitar signed by somebody famous (we can’t read the signature so we aren’t sure who). 

By the time I got back they had started Ben on one of his IV meds and he was started to get really agitated and restless. Chris and I convinced him that we needed to get the nurse and he just cried. He didn’t want to get a new IV. One of the last ones that they put in hurt so badly. It was terrible. It went bad in 12 hours and then the anesthesiologist put another one in yesterday morning while Ben was under. It finally went bad today. The VAT team came in and put anther line in and within 5 minutes the line became infiltrated. His hand and forearm are now so swollen. The VAT team decided to put one in his other arm. I haven’t seen Ben that miserable, upset , and in pain in a long time. It broke my heart. He just covered his head with his blanket and cried. Thank goodness that Dad stuck around for the new IV. It really helped Ben deal with the pain. So for those keeping score Ben has been here since Monday and he is on his sixth IV. That doesn’t count all of the other blood draws that he has had in other places or the IVs and pokes from his last two hospital stays. This poor guy has had enough. 

So we have seen his main doctors two other times since my earlier post. Dr. Simms and Nurse practitioner Ms. Renna Lange have been his main cardiology team this week and we are so blessed to have these two. They are soft spoken and have a very calming presence. When Ben said today (with 8 doctors in the room) that he didn’t understand what they were saying, Ms. Lange said she would come back and explain everything and she and Dr. Simms both did exactly that. That was so nice and meant a lot to me, because so often the translation  of the medical jargon is left up to me. 

Tomorrow we have a day full of testing. He is going to have two CT scans. One of his sternum and one of his sinuses. Because of his kidneys, he started a 12 hour IV fluid and some medication tonight to protect his kidneys from the contrast that they will give him tomorrow. After the CT, he will have an ultrasound of his abdomen looking for any pockets of fluid and infection. Between the blood work that they took tonight and the testing tomorrow, hopefully they will find the answers that they are looking for. 

We pray for answers so the doctors can construct an appropriate course of  action to treat Ben’s illness.  So that we can then go home and try to return our life back to normal. 

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Morning report. 

So the good news is that Ben had another night of no fever. Awesome! It is still a stumbling block to their diagnosis process. But he is starting to feel soooo much better. His color is returning, and our Benben’s personality is starting to shine again. 

What does this mean? 

After eight doctors filled the room this morning, they informed me that his DVT test came back ok. He does not have it. So now infectious disease doctors want to get a CT scan of his sternum. It is possible that he has an infection in his bone or in the skin above the incision site. They are also going to get an ultrasound of his abdomen. They are looking for any pockets of fluid or other signs of infection. 

Cardiology said that they are pretty certain that he does not have an infection in his heart. They have ordered more blood work to be done tomorrow (they are giving him a break from blood draws today). They don’t think it is an infection in his sternum either. But they are hoping to find the answer in his abdomen. 

Why do they keep looking? Can’t we chalk this improvement up to a miracle? And send our thanks to God while we pack to go home? Because they know that the antibiotics are working and they don’t know why. So they don’t know how long to give him the drugs. And whether they can possibly give him oral antibiotics or 6 weeks of IV antibiotics. So until they know the source of the infection, I guess we are stuck here in the hospital. 

So our prayers are now directed towards a diagnosis. God took away the fever. Now I pray that he guides the doctors to an answer so that we can go home. 

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My day started early and in solidarity with Ben, I didn’t eat or drink. Ben told me in the waiting room that I could go get coffee (because he valued his life., he told the nurse.). And then my awesome brother in law brought me coffee. I drank it ALL. And enjoyed every moment of it.

Ben got to watch a huge amount of TV today including an “Indiana Jones” movie. Volunteers came by and did a puppet show for him. He got a craft tonight from the cart and glued a huge amount of glitter on a unicorn. 

We had a visitor stop by and let me run and get a hot lunch. Which was awesome!!! Thank you Mr. Jim. 

The day was good. Take out all of the medical drama and Ben and I had a great day. 

  
   

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So this day has been absolutely crazy. I have called Chris a dozen times (not good for his work flow) because every hour we were getting different reports, changes in the plans, and finally the doctors called a Mulligan. I have no idea what tomorrow will bring. The only thing that I can say with certainty is that we are sleeping at the hospital tonight, and tomorrow we will deal with each hour as it comes.  

So the good news . . . He has not had a fever all day. Most people would send up prayers of thanksgiving and shout “hallelujah!” But this is the quote from the infectious disease doctor. 

“I like it when my patients get better, but I also like feeling smart. I like it when I know why my patients got sick and why they are getting better.” 

Here is the problem. Every single test that he has been given has come up negative for a diagnosis of an infection (although all of the inflammatory markers in his blood are increased, so they know that something is wrong.) but after being on big and bad IV antibiotics for 24 hours he started to get better. Coincidence? The doctors aren’t sure. They had a pattern to his symptoms and now he has thrown a wrench into it all by not running a fever. The doctors have no source for the infections. And they don’t like throwing powerful drugs at it if they don’t know what they are treating. 

Sigh.  But that is not even the craziest part of our day. 

After the echo this morning (which Ben’s regular cardiologist came down and performed the procedure for us.), Dr. Altman said the heart and valves looked great but that there was a “brightness” on the aortic root that looked like either inflammation or possibly an infection. She couldn’t really tell and she wanted Ben to get a CAT scan to get a better image of that area. If that turned out to be fine, she said he would probably be diagnosed with Postpericardiotomy Syndrome. That would include a course of anti-inflammatories for 4-6 weeks. She said that Ben doesn’t have much of a pericardium left and she didn’t see any fluid buildup but that would probably still treat Ben like he had it. She said if the CAT scan turned out to be an infection them Ben may go home on IV antibiotics. She also said he may still go home with IV meds because they don’t know why Ben has a fever. 

Not great for Ben. But it was a plan and it sounded reasonable. 

When we got back to his room, the cardiology team came and agreed with the plan stated above. They also added some more lab tests and decided to take off the infection precautions to his room (no one has to gown up to come in and Ben is allowed to leave his room.). They decided to keep him on IV antibiotic medicine for now. And then they shared with me that him not running a fever and suddenly getting better was good . . . But ultimately not at ALL helpful towards them making a diagnosis. If it is postpericardiotomy Syndrome, then he shouldn’t be getting better while on antibiotics. But they ordered more testing and said that they would be conferring again after the CAT scan in the morning. 

The Infectious disease team came in again and agreed with everything stated above. They even shared that not all of the new tests that they had ordered had come back (like they are testing Ben for Parvo disease because we have dogs. Crazy, but ok.). 

So we were set. And then a little while later . . . Dr. Fraser came in. With all of the other doctors that saw us earlier that day following right behind. Dr. Fraser is Ben’s surgeon and is also the top doctor at this hospital so we, you, they do everything he tells you to do. 

And he disagrees with just about everything that the team came up with. Yep. Everything. 

First of all, he says that what Dr. Altman saw what not inflammation or an infection but gel that he placed there to absorb the blood from the new valve. And of course, he did the surgery, so he would know what is inside Ben.  So he canceled the CAT scan (which is slightly harmful to Ben because of the contrast and his renal issues). He doesn’t think that this fever is caused by Ben’s heart. He wants the team to consider a sinus infection, deep vein thrombosis, Ben’s ears, some of his medicines, etc.

So we went from possibly being here 2-3 more days to maybe staying longer to maybe leaving tomorrow? It was all over the map. All I know is that Ben and I played Connect 4 while the team stood right outside our door with the door closed and discussed Ben’s case. At one point one of the cardiologists came into to check on us and I told her that I was utterly confused. She looked at me and said, “so am I.” 

Dr. Fraser told us that Ben doesn’t need to wear his pajamas any more unless it is time for bed. He wants Ben in regular clothes. And he wants Ben up and walking. I think he thinks he conjole Ben. Little does he know that our family motto is “suck it up.” And that we make Ben get up and move all the time. There is no being lazy when you need to get your steps in for the day. 

So tomorrow, Ben will have a Doppler done to his legs and arms looking for DVT. They will also run other tests to rule out the other areas of concern. I got Ben into regular clothes and Ben got 3400 steps in today. Pretty good for a boy who was put to sleep this morning and didn’t get started on his steps until dinner time. 

The cardiology team came back a little while later to let me know what all was discussed and what the new plan was. They explained that because postpericardiotomy syndrome is a diagnosis of exclusion that they needed to rule out a few more things. They also said Ben lack of fever today was causing a new wrinkle. I told them that I didn’t know what to pray for any more. Fever? Or no fever? 

And finally the doctor came by tonight to tell us that they are still discussing Ben this evening. She said that they are considering taking him off of some of his medicines because they too can cause a fever. But they can’t do it all at once. They will have to stagger it so they can figure out which medicines do it. Also, she said we would be having rheumatology come back and look into whether Ben has Lupus or rhuematoid arthritis, etc. 

Meanwhile, Ben feels better. He doesn’t have a fever. He wants to go and play on the 16th floor.  Everything is great. So shouldn’t that be a cause for celebration. Thank God he feels better but still it seems to be more of a cause for concern right now amongst the medical staff. 

So tomorrow we will deal with one moment at a time and will see what happens after that. 

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I am up really early because Ben has his sedated trans esophageal echo today, and I wanted to make sure I was ready when they came to get him. He is still sound asleep.  

 
His night went great. His highest recorded fever by the techs was 100.6. His fever broke around midnight, and he was fever free the rest of the night. So I don’t know if that is all of the antibiotics starting to work or the beginning of the end of whatever virus took hold or a what. But we will accept it and thank God for better results. 

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