Friday, August 15, 2014

Survey says!

Mike called after Jude's doctor appointments.

Me "what did they say"
Mike "blah blah"
Me " it could be this, it could be that, it may be this, but it's not that"
He laughed and said "yes".

He did come back with some information and we ended up arguing over it all. I will get to that in a second. So the pulmonologist confirmed he didn't understand the scope of the problem with Jude's tone. Mike said the doctor was pleased to hear that we evaluate an entire situation versus relying on the pulse/ox machine to tell us if Jude's in distress. The doctor agreed that Jude has some apnea issues and expressed his concerns. He would like to eventually due a sleep study of Jude so he can find out the exact dosage of oxygen Jude needs. This makes complete sense! However Jude's tone has to get resolved first.

On to the next doctor appointment which was with the neurosurgeon. They believe the surgical site is looking great and released Jude back into therapy. They also said they still believe all these issues are still being caused by the Baclofen not being at a therapeutic dose. Which may be 100% accurate, but it still leaves me questioning that if the artane dose was close to the current Baclofen dose.........then why are we having these problems.

I also spoke to the Cardiologist who called after Jude's monitor sent them an event from last night. They were very nice and explained everything in detail to me. So hopefully the medical community that reads my blog isn't offended if I butcher this. She said that the echo showed that Jude's heart is structurally sound except for sinus tachycardia and an aortic root dilation. She said they measured the dilation on the Z scale and it was 2.7 so it was only slightly enlarged. They don't believe the enlargement requires monitoring itself only a follow up. However, they will continue to monitor Jude's heart via home for the next thirty days. They are looking to see if during these events if Jude's rhythm is off. If it is or if the signal is not working right in the heart then we have a more serious issue. However, if lasts nights episode is an indication Jude's heart will be fine. So I asked her, "Can a high heart rate cause an overall issue with the heart". She answered, "yes the heart can begin to tire but that is more likely in patients that have abnormal structure or abnormal patterns". So then I asked, "when does the fast heart rate become a problem?". She explained that if the heart rate goes up and stays up........then it's a problem. If it doesn't recover itself or if they start to see the other issues she mentioned in addition to the fast heart rate. So one more question, "So if we get to the end of this thirty days and no other issues are noted then basically my guess is we then go back to the other doctors to find out what's causing the tachycardia in the first place?". She giggled emphatically and replied "yes". So we wait.

So I looked a little online today. I am one of those that believes the Internet can be your worst enemy, but also provide a lot of information. I researched high heart rate with Baclofen and low and behold......guess what I found! Several patients actually listing they had this! I even found an experiment in rats that referenced high heart rate, high blood pressure, and aortic dilation (hmmm). I also found this:
"c. Stroke: Baclofen has not significantly benefited patients with stroke. These patients have also shown poor tolerability to the drug."
Don't get me wrong. I know Baclofen has been a miracle for some people and it eventually may be for Jude.

So Mike and I argued because I get so frustrated with this entire process. He reminded me that Jude is always a waiting game and never an easy fix. I just get frustrated that we have so many hands in the pot, so many guesses, and not enough pin points. I feel like WE are the ones that take Jude home knowing he will have more episodes and we are the ones that feel helpless. The doctors are doing their best but the hurry up wait and see just gets old sometimes. However, Jude is Jude and his case is complicated.


Reagan Leigh said...

I know a little girl in Houston that had terrible episodes (typical to what you're describing Jude going through and similar to Reagan's "bad" days) after she got the baclofen pump! I never mentioned it to you beforehand, because I knew you wouldn't want to hear anything negative after y'all had already decided to get it! Hopefully it will eventually help him! The waiting is so tough!

Anonymous said...

I've been following your blog for years and I feel compelled to throw in my hunch. I know first hand how complicated little guys like Jude can be because my son was so similar and I've worked as an RN for 12 years. The medical community does their best but most times they are mainly focused on their own specialty and have a hard time wrapping their head around the full picture. I very much identify and sympathize with your struggle. These special kids do not medically respond to meds or procedures/surgeries like "normal" so it's very tough. The pulmonologist and cardiologist sound like they are focusing on treating the symptoms of the new "cause" rather than identifying what has recently thrown a wrench into things. Since Jude started exhibiting the elevated heart rate, increased spasticity and apnea with a need for O2 now, the only change in variables I've noticed you mention in the baclofen pump. If you don't mind me saying, I believe it's either the drug or the pump causing these new and/or increased issues. I don't recall if you'd written whether he'd had a thorough trial run of Baclofen before his surgery to test his tolerability but I do see that they think his problem is due to not enough Baclofen. That isn't making sense to me. Trust your Mommy gut. You guys are doing an amazing job advocating for Jude and being the best parents he could ever have.

Anonymous said...

Still contemplating, and after more consideration I'm wondering if the Artane has been stopped. If so, maybe it was more beneficial to Jude than realized and without it he's struggling. It's hard to identify the culprit if more than one variable has been changed at a time. I suppose if he hasn't been getting his Artane and is was helping, it is possible that once the Baclofen is increased to a therapeutic dose his symptoms will subside. I'm sure the doctors would say "we have to wait and see" in response to my opinion.