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Archive for July, 2015

The morning started early with Chrisand Ben heading off to TCH for a follow-up visit to his cardiologist. Since last weeks visit to the cardiologist was spent talking about rashes,this visit was to talk about his heart.
   
According to the cardiologist everything looks good. The leaking in his mitral and aortic valve is still the same as the last echo. There is a leak in his coronary that has been there since the surgery. She doesn’t seem concerned about it and thinks it will resolve on its own. But she would still like to see him in a month to check on it. He took additional labs as well and we will find out those results on Wednesday. Dad says he was a stud when it came to the blood draw. He walked in. Sat down. Told the tech to count to three. And then BAM he got it done on the first try. He was a rock star. 

Meanwhile back at the ranch . . . Papa and grandma Grace came to Conroe to take me for testing at the hospital this morning. This not being able to drive sucks! And Chris has absolutely no sympathy for me. I think that he is giving me payback for how hard I was on him when he broke his arm.ūüėČ he must be loving this.  

Of course my mom and I make a sorry lot. Mom just had surgery on her foot so she’s here at the house helping us out this morning with a bummed foot and a walker. It seems wrong for me to sit in a chair with my arm raised while my mom hobbles around in a walker loading my dishwasher. But I wasn’t about to argue with my mother when she tells me to sit down. Instead I grabbed the 13-year-old and a 10-year-old and sent them to help grandma so that she could sit down too. 

I do have a buddy who’s been sitting with me keeping my feet warm. I think she’s trying to make up for the cat toy I tripped on. 

 The day ended with a lovely dinner provided by the Finkes. It was Ben’s favorite. Meatloaf. 

  
Thank you for the wonderful dinner. Madie has started to organize the house. She started doing laundry. Laundry has been so low on the to do list that everyone was desperate. She put together a grocery list. Went online to try to find some meals that she thought that she could cook. She is a very impressive 13-year-old. I don’t know where she gets this Type A Personality!  

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After spending three weeks theater camp, Madie was part of the cast for Snow White Goes West. It was a cute musical and a lot of fun to watch. You can tell Madie had so much fun putting it on. She met a lot of new friends and they all seem like sweet girls.  In fact she inspired Ainsley to want to go to the theater camp next year. That should be interesting! Both girls at the same camp? Poor grandma. 

I think Madie has definitely found her niche. We are so proud of her!   
 

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Last Sunday Ben and I were sitting in the hospital hoping that we are going to get sent home on Monday. Now today I look back on the past week and I can’t believe the chain of events that have taken place. We came home Monday in a flurry of drama and tears. On Tuesday we spent the day celebrating Ainsley’s 10th birthday. On Wednesday Ben broke out in a mysterious rash which caused us to spend the entire day seeking medical help. On Thursday Ben and I went down to Texas Children’s Hospital and spent half the day testing, and meeting with doctors to deal with the mysterious rash. On Thursday night we confused and scared our neighbors when we had an ambulance pull up to our front door to take me to the hospital (they thought it was for Ben. ). On Friday morning we find out that my broken arm is going to take more than a pretty cast to fix and now it’s my turn to be helped by the medical system. Because next Wednesday I will have surgery to put my arm back together.

I have gone from being my son’s nurse to my son being my nurse this morning.  And he is doing an excellent job. Of course, he has been trained by the best. And unfortunately he is had to be a medic and a nurse for his parents before (he was also there when daddy broke his arm at Christmas), so he has learned to be calm under fire.  

If you know me at all, you know that I have a hard time accepting help from others. I like to take care of things myself and not be a burden on others. And although our family motto “suck it up, buttercup” can be seen to support not asking others for help and learning to do it yourself. It can also teach us that it is OK to accept help when that offer of help is genuinely given out of love.

Chris keeps reminding me that I need to take care of myself so that I will heal faster and we can get back to normalcy as soon as possible. I feel most sorry for Chris right now. He has to try to take care of both Ben’s medical needs and doctor visits as well as mine. Plus try to take care of her other children, the house, the meals, and oh yeah  . . . working a full-time job. Nothing to it. 

Despite of all of this drama there are blessings. At least this is happening in the summer when school is out. We have a great support system of family and friends. Our children are older and can help themselves and each other. I am learning to be more patient and more accepting of imperfection. There are families in a lot worse situations than ours. At least it’s my arm and not my leg. 

So we have many things to be grateful for. And I know that a year from now we’ll look back on this summer and laugh. And we will also thank God that he brought us through it all with our sense of humor and our love for each other intact.

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Before we left for the doctor’s office this morning I decided on a pink cast.Ainsley  said that would be a good color.
After visiting with the doctor, there would not be a cast for me today. He said that I had a really bad break.  He said I broke the end of my radius into several pieces. He called it the radial head. He said that it required surgery to put the bone together.  Once he opens up the arm he will look to see if you can screw the pieces back together. If he can’t screw the pieces back together and he will give me a new metal radial head. After the repair is over my recovery will look a lot like Chris’. Moving the arm as soon as possible and lots of physical therapy.  The hard part of it all is no driving. At least it happened in the summer and not during the school year. 

The good news is I’m pretty sure were going to meet all of our out-of-pocket expenses with our insurance by August. Too bad that we will be so sick of the medical system that we won’t want to have anything else done. 

Ben has an all day cardiology appointment on Monday to check his heart. Instead of me going dad will take him by himself.  This is the first cardiology appointment since  he was two that I’ve ever missed.  I will be going to testing at the hospital on Monday and it just can’t be helped or I   won’t be able to have surgery on Wednesday.  

Ben is doing well. The doctor said on Thursday that it’ll take 5 to 7 days for his platelets to start working again.  So he may have this rash for a while.  If that is the worst of it, we will take it.  

We are going this weekend to go see Madie and her play. She’s been working on this for three weeks while staying with Papa and grandma Lake.  And then we will have her home with us again on Monday. We miss her and can’t wait to see your again. Of course she is 13 and has been an only child for three weeks.  She may not be ready to come home and be with her siblings again. But we certainly can’t wait to see her. 

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Well it happen. Every mother’s nightmare. Or at least my nightmare. I tripped over a cat scratching post and landed on my elbow and broke my arm. The worst part was that I was home alone with my youngest two kids. Ben And Ainsley were fabulous.  Chris was on his way to Angleton to do his volunteer shift as an EMT. They managed to call dad who then told us to call 911. He said he wished he had done that when he broke his arm Christmas. Then Ben made me a sling out of the same jacket that he used to make a sling for dad. In the middle of talking to 911 Larry  and Shirley Finke came through the front door. I canceled the 911 thinking that we could just drive to the hospital. But as soon as I stood up I realize that I was going to need help to get there.  Before we called 911 the first time I planned on driving myself with the kids. So glad dad talked me out of that one.  

Chris met me at the hospital and I was glad to see him. After x-rays they said that I broke the radial head on my right arm.  There are several fractures but she didn’t think it went all the way through the bone. They put me in a splint, gave me medicine, and sent me home. 

Here are a few things that I learned:

  1. Always make sure that your phones are charged. My cell phone was dead, And all of the cordless phones were dead. Luckily we had a 1970 AT&T corded phone in the kitchen, but my kids do not know how to make a phone call on that style of phone.
  2. My children are great in a crisis. While I sat on the floor they brought me ice, a bucket to throw up in, made me a sling, put shoes on my feet, plugged my cell phone into charge, and packed my purse.
  3. We have great church friends. They were willing to come and sit with the kids at our house until I got back. And even better they helped make sure I didn’t pass out before the ambulance got there. 
  4. Right now, we have a great family motto. Our family motto is “suck it up buttercup.” With everything that’s going on in our family lately it’s a great motto to live by. As stressed as we are with all of our drama, we can handle this.

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So Ben and I said thank you and got the heck out of there before anyone changed their mind. 

Dr. Altman checked Ben over from head to toe. She did labs on him and said that his white blood cell count was a little low but everything else looked great. His kidneys are working well and his inflammatory markers have improved. He is no longer anemic and his platelet count is fine.  

She doesn’t think that this is a viral rash. She thinks that this is a medication issue. She thinks that because he is taking both aspirin and Motrin that it is interfering with how his platelets work causing petechiae all over his body.  She took him off aspirin temporarily and is going to see him again Monday to make sure that everything is improving.  

The good news is that she also said his heart sounded awesome compared to prior to surgery! We love hearing that. 

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Well, if something weird was going to happen, it would happen to Ben this month.  He has broken out in a head-to-toe rash.  There was no way that I was going to call the hospital doctor. So I called our pediatrician. They wanted to send us the ER, and I begged, pleaded and cried for them to not send us back to the hospital. They will just start testing all over and we will be in the hospital for another week.  The doctor agreed to see Ben in the parking lot. He didn’t want Ben to catch anything in the office and didn’t want Ben to share anything if it was contagious. So we met the doctor in the parking lot, he climbed into the car and examed Ben in the backseat. He said that Ben had a petechiae rash, and that we needed to call our cardiologist. 

I reluctantly agreed to call the hospital doctors who had treated Ben.  When the first doctor called back, he apologized for the fact that we had to call back. We explained the situation and he said he would speak to his attending and call back. Two and half hours later with no call, we called them back. We spoke to Dr. Khan and she said that it could be either a virus or low platelets. She said we could either come into the ER tonight to have labs drawn or see a new cardiologist in the Woodlands in the morning. She said she believed is that it was petechiae but she would like to have a doctor she trusted to look at it first before she moved on.  

Well, there was no way we were going to the ER and I really didn’t want to see another new doctor. I told her that I this would be like our tenth new doctor this month.  So we sent her pictures of the rash and she said she thought it could wait until the morning, and she was willing to call Dr. Altman to see if she could fit Ben into her schedule tomorrow. Luckily she was able to fit Ben in early in the morning. So we will see what Dr. Altman (his regular cardiologist) has to say. Even if she hasn’t been treating Ben every day in the hospital at least she has known Ben since he was two. And a familiar face is very much appreciated right now. 

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 She says she is a “ten”ager.  Funny girl. She also said that her snarkiness was coming out today because she turned double digits. God help us all!!  

  
   

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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 morning rounds with the doctors held good news so far. Liver and kidney function is good. No fever. His inflammatory marker was up a little but the increase was so small that the doctors declared that it was the same. A fluctuation. I can get behind that. 

We are one step closer to the D word (as one of the doctors referred to it as. We will follow their lead and not say the word discharge. We don’t want to jinx it.). The nurse practitioner brought us Ben’s prescription for antibiotics to take home. 

Ben is filling his time with Legos. 

  
He has completed several projects so far and had fun playing with them every day. 

  
I am NOT packing until I get the final word on Monday. I pray for good results, but am fearful of being disappointed. 

Thanks to Aunt Sarah for the drive by drop off of coffee and Megan for the hug. The closer we get to freedom the harder it is to be in this room!! So I appreciate the quick coffee run diversion. 

Hopefully we get the good word tomorrow!  We are still constantly sending prayers up for no fever, working kidneys, and good blood work. The doctors said today that the optimism in our room is so high that she had no doubt that we would get to go home tomorrow! 

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