Thursday, March 17, 2011

Hasn't my motto all along pretty much been "baby steps"?

Well...more baby steps are ensuing!

Leslie had a follow-up visit after her ER visit. First was with the cardiologist. Amazingly, her defibrillator provides a cardiac monitoring strip of any time we want. The cardiologist could see exactly what her heart was doing, even if she wasn't on the monitors. It was very, very cool. He was NOT concerned with the rhythms Leslie's heart would go into at all. He also assured us that Leslie, right now, has a VERY healthy heart.

We also took her to her primary doctor. Her primary doctor didn't realize that the defibrillator could do this, and wanted her to wear a 24 hour Holter monitor. This was fine with us, but it is just another reminder how these doctors are all working for HER, but none of THEM are working TOGETHER, and it gets tricky. It's all on us to relay information, and that gets stressful!

Anyhow, after rehashing the ER visit (and her doctor seemed a little more concerned, which prompted her to do the Holter, but also prompted her to start Leslie on Magnesium pills).

As soon as she mentioned a new pill and another prescription, George and I kind of smiled at each other... that lead into our OTHER reason for the visit. Her meds.

We all feel she is over medicated. All of her medications serve a great purpose...improve memory, help with depression, etc. But all of them TOGETHER are too much for HER.'

At first I could see the skepticism in her doctors face, but I wasn't backing down on this. I know my sister and while I may not understand her brain injury, I know there are certain parts of her that are her, and nothing will take that away.

Therefore, her dose of Lexapro is cut in half (5 mg) and her Aricept is also cut in half (5mg). Her doctor said if we didn't notice much of a change, they could be eliminated altogether (like we already did with the Namenda).

Now I know I'm not with Leslie as much as George and my parents, but I noticed a pretty big difference! She smiles now. She has expression. She gets excited. She plays with my kids. It has been such a significant change, and I love it.

Last night, my mom and I took her out to RIM (Rehabilitation Institute of Michigan) where she spent about 2 weeks of her recovery to take her to a brain injury support group. I had my daughter, Paris "Hollywood" Hilton" with me (more on that another time..) so I missed a lot of the meeting, but I was able to hear the introductions and they were very refreshing for me. For one, I saw so many people that were just like my sister. A little forgetful, and they'd lose their train of thought while speaking. That's her! One gentleman spoke up, saying how he had just graduated from college as an accountant when his brain injury happened. I literally almost wanted to stand up and shout, "That's not fair, too!" excitedly, but I knew that would be inappropriate.

You see, I really struggle with how unfair all of this has been. Not just the fact that it happened to her, but the timing of it. She just got married, FINALLY landed a teaching job, bought her own home. Things were darn near perfect. Why did it even happen, but why did it happen THEN? The support group was a great way to learn that these things do happen, we aren't alone, and there are people out there that truly understand. I hope to get more involved in it. I thought it was quite powerful.

I love you, Les. Every single day I give thanks for you. You have no idea how much you mean to me. I will forever honor you.

Friday, March 4, 2011

It's kinda funny how this happened.

My mom and I have been talking about Leslie a lot, and how we are kind of discouraged with her progress, or lack thereof. My mom has said since last week how Leslie seems even LESS motivated now, and we didn't realize that was even possible.

So we have started discussing her meds, and how Leslie never used to take ANY medications, except maybe an occasional Excedrin for a headache, and now she was on so many. We started questioning if it was medication side effects that might be limiting her progress. Neither of us knew when her next doctors appointment was, but it was something we thought might be worth discussing.

See, all along, we have had so many different doctors working with her. A neurologist, a cardiologist, a primary doctor, a rehab doctor, and the defibrillator doctor (yes, this was different than the cardiologist). Even from the ICU days, it always felt like everyone was working for her, but none of THEM were working together. Everyone had their own agenda. They came at all different, various times, so the family member that was with her was always different. It was SO. FRUSTRATING.

Well now that she's home, it's no different. The defibrillator doctor has seen her several times and he's the one that prescribes the Sotolol (a blood pressure medication that lowers the shock threshold. Her defibrillator does NOT work without this medication). Her primary doctor has mostly continued the hospital medications, which includes things like a multivitamin, stool softener, and a medication for acid reflux (there may be more, these are just the ones that come to mind) and she has also started her on Namenda which helps with memory, and an antidepressant, because back in December, she was crying a lot. Then the rehab doctor put her on Aricept, which is also for memory. The Namenda is a very new pill...that ironically was started right when we noticed she was starting to get even more fatigued. Right when we put those together was when I started questioning ALL of her medications and how they may be affecting her.

So anyways. I got totally off track. My mom and I were starting to touch on questioning the meds, then Thursday at work, while on my lunch break, my cell phone rang. It was George. He started right off the bat saying "I think we need to take Leslie off of some of her meds." I swear, I literally almost jumped out of my chair as I said, "I totally agree!" I spoke with a pharmacist who said there are no side effects to suddenly stopping the Namenda and Aricept. Now I know what you might be thinking...why stop something that is for memory? Well. Because how will we ever know if it's working? She definitely doesn't seem to be getting better. We'll never know without them if they make a difference, or if they are causing her so much fatigue, it's hindering her progress.

It has now been a few days since she's had them, and just today, Jay commented on how much better she seemed today. He had no idea we were stopping some meds.

Next up...the antidepressant. When she was started on it, we saw her crying spells decrease significantly. But then when she didn't shed a single tear at our Uncles funeral, I was immediately bothered by this. My sister used to cry if her fruit salad didn't look "right". For her to be so emotionless and expressionless at a sad event was NOT like her. George also informed us that at her last appointment, the doctor increased it! WHAT! She was doing okay...she didn't need a higher dose! I don't think she needs a dose, period, but that'll have to be worked toward.

The Sotalol and Coumadin are the only "must-haves." Whatever side effects those meds give her, we have no choice but to deal with. They are helping her live. The others? Does she REALLY need it? And the more you research a med, the more you learn. Like how one of them that she is on can cause heart disturbances. Another one can lower your magnesium (remember her magnesium being low in the ER last week? Hmmm?) and low magnesium affects the heart, too.

We just don't know. Obviously, NONE of this will be done without her doctors knowing, but I think after myself, my parents, and George all realized we felt so strongly about this, it was kind of like we all got a burst of energy to go forward with gusto again.

Team Leslie! I love you so, so much.