Monday, July 11, 2011


Salt. Sodium. Over the last 24 hours, sodium has been an obsession in our hospital room.

Sodium controls everything right now. Because James' sodium levels are low (122 for you medical people out there), he can't get an MRI done today. In order to get an MRI, James has to be sedated. Otherwise, his head would not stay still and it would defeat the purpose of trying to get the pictures of his brain. The anesthesiologist doesn't feel comfortable giving him general anesthesia until his sodium levels are in a more normal range.

James also cannot start chemo until his sodium levels begin to be in a more normal range also. Because of the drugs he will get his first round of chemo, he will need maintenance fluids running through his port at a high rate. When fluids go through your body that quickly, they can strip your body of sodium. Therefore, his sodium needs to be higher in order to begin.

Last night before James' seizure, I was talking to my Dad about how lethargic James had been over the last 24 hours. (My dad is a dermatologist which has been extremely helpful in understanding the medical terminology that is so very confusing!). He suggested that they take some blood and do a glucose test to make sure that James wasn't having some sort of diabetic shock due to the fact that he really has not substantially eaten anything in a week. When I went to ask the nurse about doing a glucose test, we discovered that no labs (blood work) had been run on James since the day we were last admitted, which was July 4th. It was July 10th. About 30 minutes before his seizure, blood was drawn. I am so thankful that he suggested this. By the time we got the blood work back, James was mid-seizure. The blood work showed that his sodium levels were low and therefore a factor in his seizure.

Sodium is a critical part of the chemical make up of your body. I had NO idea.

As I was writing this, the Neurologist fellow finally came in to see James. Today James saw the Oncology team, the Neurosurgery team, an Endocrinology team and the Neurology team. (If you can't keep them all straight, we have added the endocrinology team. The Endocrinologists are much like the Neurologists. A little bit of Asperger's perhaps, and definitely into chemistry and formulas. I asked him a question about whether what our next steps would be if a particular treatment did not work. He answered, "Of course it will work. This is the solution." I have found so many times in medicine that there is not typically one solution. So for him to say that he has the magic treatment is intriguing.)

All that aside, the Neurologist saw James and sent it to a CT scan- STAT! The CT showed that James' brain stem region is swelling, and therefore causing the seizures and his eyes to be static. For some reason his eyes bother me the most. I miss those beautiful, blue, baby eyes. Those eyes that stare at me and I know exactly what he is thinking. The past few days have been extremely difficult for me. Really, the last two weeks. Ever since his craniotomy, I have not seen my baby. And I honestly don't know if I am going to get him back. It scares the living daylights out of me to think that the James I have known and loved over the last 8 months might be gone. And although I will love whoever James is and who he becomes, I think I will always have some amount of grief if the "old" him doesn't make a return.

So we went straight from CT to our new room on D6. We were there about 10 minutes before we were told we were moving up to the PICU. James also has been having what we are calling "mini seizures" now. We, along with the doctors, aren't exactly sure what they are. Sometimes his heart will begin to jump (around 150-160 bpm) and then his face will turn bright red and blotchy. His arms will lock and he will stop breathing for about 30 seconds. He has been doing it all day. The first few times no one believed us. This afternoon, he did it when the charge nurse was in the room. She tried to describe it to the doctors also, but honestly, it's hard to explain. Then while we were on D6, James did it twice more with the entire 10-person oncology team in the room. They finally understood what we meant. We have been told that as soon as his sodium levels reach a more normal level, those will stop. I hope so.

So we are officially in the PICU again. Simon, our nurse from our last stay in the PICU, is back. He agrees that James looks far worse than the last time he saw him. I feel so bad for Simon- I have had a really rough day and he definitely got to hear my temper tonight. It wasn't directed at him, and he told me he understood, but I am really, really frustrated tonight.

I am ticked. I'm just going to say it. Today I am ticked. I would say I am something worse, but my friends at Baylor read this blog and the server's on campus will block my blog if I say anything controversial. Matthew and I have been telling the doctors for a WEEK that we thought that James was having seizures. When we did the EEG on Wednesday, it was only because Matthew and I insisted upon it. It only lasted an hour, and James was asleep during it. James also has some spinal fluid (CSF) on the back of his head. If I had to describe it, the back of his head feels like a jelly pack. We have been worried about this as well, and no one seems to be interested in our concerns. In the PICU they are finally somewhat concerned about this fluid collection.

I am also ticked that it took neurology until 4:30 to finally come and see James today after he had a seizure 18 hours before. I just absolutely think that is ridiculous. I know that they are busy, but the fact that as soon as the neurologist saw James he immediately thought we needed to be in the PICU. We probably needed to be in the PICU as soon as his seizure ended last night.

We also have been saying all weekend that James has been lethargic and not himself. Even at a new baseline of normal, this is not James. I am so mad that it took until Monday for something to finally happen. Nothing seems to happen in the hospital on the weekend. People do get sick on the weekend though. And I am mad that we have been in the hospital for a week and no one has been managing James' case to have caught this.

So now, if they thought they saw the Mama Bear come out a week ago, they were wrong. The Mama Bear is coming out in full force. It's not my normal disposition to be assertive. I'm pretty much past the point of being assertive. I'm even tempted to Med-Evac James in a helicopter to Philadelphia Children's hospital or Dana-Farber in Boston to ensure that James gets the best care. If I thought that it would make the slightest difference, I would. And that option is definitely still on the table, especially after today.

On a much better note- I have the sweetest friends. I'm in a MOMs group at church (much like MOPS if any of you do that). We get together once a month and visit and we have been starting to learn to knit. A whole host of them came up to the hospital tonight and delivered a labor of love- it's a prayer blanket that they have all been working on. It's the most beautiful blanket! They poured their hearts into it. They lifted my spirits, and I definitely needed them here tonight. Isn't it funny how people are put into your life at exactly the right time?? They are such sweet, encouraging women, and I don't know how I got so lucky to meet them.

I'm so sorry about all the medical talk. We know that several people read our blog now whose children are being with rhabdoid tumors, so we want to make sure that we have the medical information in case it helps someone else. There isn't a lot of research about this, so we really want to be able to document what is going on so that maybe in the future it will help another family.

1 comment:

  1. Kara, no one knows your child like you. You are his best advocate. Your gut, for lack of a better word is your best judgment and you will find is usually 98% correct. If you think something is worthy of them checking out, DEMAND that they do so. He is your son and they are obligated to do so. If they refuse, go to the patient advocate in the hospital and report them. Document your concerns daily and remind them that you are doing so. Once they realize that you are holding them to a high standard, they will respond. There is no need to threaten, just be firm and kind. Make good note of the employee you are speaking with and the time of day that your requests are made. When you go to make your report you will have complete data at your disposal. I found it very effective when dealing with our son to ask the employee, "Could you please give me your first and last name and your job title for my report?" Nothing else need be said. They got the message and spread it to their friends. It doesn't matter what they think, you don't really care. What you do care about is the care of your son.

    You also might want to bring a laptop to the hospital and contact Children's in Boston to see if there is a trial or a different protocol available that would seen to be more helpful. Mention that to the patient advocate and tell him/her why you are feeling the way you are. They are there to do a job, not to be your friends!

    Hang in there! There will be days, like there already have been when you think you cannot bear another day, but you find the strength to go on. God blesses us so much! Just remember, you are in charge of your child and his care! Make them do their job!