Today has been the most emotionally exhausting day I have had in a really long time. I am frustrated and demoralized. Dealing with the medical teams today has brought me to tears all day. Thinking about today at the hospital makes me want to cry right now.
The good news is that we are home. No more tests. No more blood draws. No more middle of the night wake ups for vitals. We can eat real food again and be together as a family. Snuggles on the couch are the best. I even enjoyed the . . . Wait. It is hard to say this . . . the . . . the . . . animals. Rosie, Millie and I spent some quality time together. And having Hank bounding in the room at full speed was epic.
The unfortunate news is that Ben is back to running a low fever. His official diagnosis is postpericardiotomy syndrome. He has no pain. Just night sweats, headaches and dizziness with low fever, and increased inflammatory markers. Ben and I joked yesterday that the hospital has scanned every part of him except his big toe, so maybe that is where the problem is.
Our frustration is this. The hospital started him on iv antibiotics and within 48 hours he was fever free. He stayed fever free from Wednesday until Saturday. On Sunday, he started acting like he was coming down with a fever (Ben sits listless and watches tv without commentary. no laughing or smiling during it at all). Then his ears and his face started to turn red, and at the next vital check at 3:30 he was running a 99.4. For 14 days, that is exactly how his fever would run. Then by 9:00pm, he would have a 101 and we would give him a tylenol and the fever would go away. But on Sunday . . . they gave him Motrin 30 minutes after they checked his temp, and of course, within an hour his fever was gone. So what changed? They switched Ben from iv antibiotics to oral antibiotics Saturday morning and started him on Motrin 3 times a day. The problem is that they can’t find any infection. They have run dozens of blood tests in the almost a month that we have been in and out of the hospital and NOTHING has grown in the cultures and no other test has come back positive. So they know for some reason the iv antibiotics started working this time, but they have no idea why. Our understanding on Friday was that if Ben had a 99-100 temp that this would be an indication that the oral antibiotics were not working and potentially the Motrin was masking a fever.
So . . . when the cardiology nurse practitioner came to check on Ben this morning, I told her about what happened on Sunday. This person was someone who we had worked with a lot over the last month and she knew Ben really well. She knew how desperately we wanted to go home and that we would not be bringing up this subject lightly. She checked Ben over and said she would report back to the team. She wasn’t sure what they would do, but she would certainly talk to them.
Then the medical student from infectious disease came in to check on Ben. Being a medical student and the lowest man on the totem pole for the entire team, he had very little useful information. But he ended it by telling us that he would report back to his team and let us know.
Our biggest problem today was that we had brand new attending doctors in both cardiology and infectious disease today. Neither of whom I had ever met before that morning. There was hardly anyone left on the teams that we knew. The only person who we knew well was the cardiology nurse practitioner. I told her that we really wanted to go home, but that we weren’t interested in coming back again. So when we went home, please make sure that Ben was ok and finished. We had already done that twice and it was getting exhausting both physically and mentally.
The first team to arrive was infectious disease. Including the attending, there were five doctors in our room. The attending doctor tells me that they have scanned everything and that there are no infections in Ben. He did a total 180 from the attending doctor on Friday. I asked him why then did the iv antibiotics take his fever away and then when they switched to oral antibiotics that he started to feel ill again. He said, “coincidence.” Because all of the blood tests have come back negative, then he isn’t sick with an infection. He said that he doesn’t consider a 99 a fever. I told him that he only ran a 99 because they gave him Motrin within 30 minutes of taking his temp. He said we will never know how high it may or may not have gone. I told him that I wished that I had asked the nurse to hold out on the medicine, so that we could know. He said agreed, but that he was on a low dose of Motrin so it wouldn’t mask the fever. I told him that he wasn’t on a low dose and that he was on a full adult dose of Motrin every 8 hours. He seemed confused regarding Ben’s medical history at the hospital. He kept getting the info wrong. I kept correcting him. It was clear that this team was done trying to figure out why Ben was ill. He said that I could request to spend another night so that he could be monitored in the hospital to see what would happen. I asked if he stayed would they do anything different if he ran a fever again. He said no. He doesn’t consider it a fever unless it is over 104. I realized that this conversation was pointless. I stopped talking and asking questions. Clearly I was getting no where. I held out hope for cardiology.
They were the next team to enter the room. The new attending said that they were confident that Ben had postpericardiotomy syndrome. I asked about the low grade fever on Sunday and how Ben felt ill. She said that this wasn’t a fever. I told her that they gave Ben Motrin within 30 minutes, so we don’t know how high it could have gone. She said that he looked fine this morning. I told her that he looks fine EVERY morning after a night of fever. For 14 days, we had a pattern. Ben was starting the pattern again. She said that the 99 could have been because he was excited or hot or had just gotten up and walked. I told her that none of that happened. He DIDN’T feel good. She said that there was nothing else that they could do for him in the hospital. They had tested for everything and nothing was wrong except he just had major surgery. She said that he may run a fever for a while with this syndrome. I asked how long? Up to a month. Are you kidding? I asked her at what point to call them regarding this fever. If he runs over a 102. I reminded them that I had a lot of trouble getting a hold of someone before in cardiology and if it wasn’t for our pediatrician calling and getting involved both times, then things might have been worse. Well, you should have called the Fellow on call. I did. He said if the fever went away in the morning then not to worry. Well, you should have called your primary cardiologist and speak to her nurse. I did. She never called me back. Well, you should have called and spoke to someone on the 15th floor (the cardiology floor). I did. She told me to go see my pediatrician the next day. I told them that if it wasn’t for our wonderful pediatrician being our safety net that Ben may have been worse. They said I could call the general line and ask for attending doctor or fellow. Yeah. I am going to call and speak to the doctor who saw my son for five minutes that day or the Fellow who for the few times that he did see Ben on rounds was ALWAYS on his phone checking Facebook. How is that going to help Ben? Every time we come back, it is a new doctor and we spend a week starting from scratch and running a million tests with no results. Forget it. The doctor said that if I was really concerned that we could stay another night. I asked what good would that do? Would they do anything if he ran a fever? No. Then what was the point. I would rather Ben run a fever at home. We discussed the antibiotic issue and they said that they can’t explain it, but because it took the fever away that they were willing to put him on a similar oral antibiotic. How will we know if it is working if we are giving him Motrin around the clock that will potentially mask a fever? She said that the blood test will show an increase in his inflammatory markers. These markers had increased so slightly over the last three days that they considered it negligible and within the +/- of the test. By this point, I am so frustrated that all I can do is cry.
Then these doctors started to try to sympathize by saying they realize that we really want an answer to Ben’s problem and that they were sorry they couldn’t give us one. You people don’t know me. I don’t want an answer to WHY he is sick. I told them, “I DON’T NEED AN ANSWER. I NEED BEN TO FEEL BETTER SO WE DON’T COME BACK.” We have already done that twice. We can’t keep doing this. They started to repeat that we may never have a good answer as to why he was running a fever. I said that is fine, but this is the SAME story you told me the last time and you made us come back here when he started running a 102. I am NOT coming back. This is it. The doctor asked if I would like a follow up call in a few days. I told her no. What was the point? She wasn’t going to do anything. She said ok. I told them that we just wanted to go home. She said I could call if I had any questions or concerns. I told her thank you, but I would follow their guidelines and only call in a month if he was still running a fever. Possibly. At that point, I was done. I could barely hold myself together in front of all of these people. I just wanted them to leave the room.
Then I called Chris and cried. He decided to drop everything and come up to the hospital. He told me not to get discharged and was there anyone I trusted to talk to. I said yes, the nurse practitioner. So when she walked into our room to check on us, I had calmed myself down enough (by packing the entire room quickly) that I was at least able to speak with her calmly and told her that my husband was on his way to the hospital and had some questions for her. Would she be able to speak with him? She said absolutely. She said she has all of our discharge papers ready and made sure that we had good phone numbers to reach the appropriate people with questions. Then she gave me her cell phone number and said for us to call with any questions or concerns if we couldn’t get a hold of anyone.
When Chris got there, we met with the cardiology nurse practitioner outside the room. Chris was wonderful and asked all of the right questions. But he did a great job of being positive and inquisitive and not negative and accusatory. And thankfully the nurse practitioner was great at walking us through their thought process. She also explained that if this didn’t work, they would know by his blood work and that they would then consider a PIC line and iv antibiotics. And that this could all be done with a minimal stay. No more long hospital stays. I told her that I wasn’t going to call if he continued to run fevers or 102 because we would just repeat the last two hospital stays. She said that she had already emailed Dr. Altman and put notes in Ben’s chart that if we call regarding a long fever or a high fever that they recommended that we do outpatient blood tests so that we don’t have to come back to the hospital. Well, that was something good. She also explained that even if we had found the source of the infection and that the iv drugs were working, she would have recommended a trial run of oral antibiotics to see if it would work just because of the danger of going home with a PIC line. Not that it is bad and she knows we could deal with it, but that there is just a risk of getting more sick because of this line. That made sense. We could agree with that. We go on Monday to see Dr. Altman and at that time, she ordered Ben to have additional blood work to make sure that we aren’t masking an infection and that he is getting better. She said that even though he was taking Motrin and that it might mask a fever it would not cure an underlying infection. That would show up in the blood test. She said that being in the hospital is emotionally draining and that Ben might just improve by being at home and in familiar surroundings. She said we should limit his large group activities for a while, but get back to as much normalcy as possible. After this debriefing, Chris and I both felt better about our plans. Although we still aren’t thrilled. What are we going to do? There is nothing we can do. Go home. Take care of Ben. And pray that this all goes away.
I have lost faith in these doctors. It feels like since they can’t figure out Ben, then it would be better for Ben to just go home. I thought I could be an advocate for my child, but felt that in the end I failed. I pray that they are right. I pray that this low grade fever will just go away on its own. I pray that Ben won’t feel icky for the next month. I pray for normalcy.
I am grateful for the few people who I feel were truly advocates for my child. For those medical professionals who took time to explain things to us and answer our questions without belittling. For our pediatrician who called us every day that we were in the hospital and fought hard to get Ben the help he needed. For family who made coffee runs up to the hospital every day and answered my five million medical questions. For family and friends, who sent words of encouragement by text and email and let us know that there were people out there praying for and thinking about Ben.
In the end . . . we are home. Being home is a cure in itself. Even though Ben ran a fever tonight, he was laughing with his sister during the good parts of the tv show. Ben is with us. For all of the yuckiness of today at TCH, that hospital has saved and improved Ben’s life on numerous occasions. And I thank God for that.
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The day ended with a lovely dinner provided by the Finkes. It was Ben’s favorite. Meatloaf. 
The Puddles 