Good News/Bad News

First the good news:

We're back home again, we've had a couple of days to rest up a bit, and we're getting back into our normal routines again.

Adam has not experienced any pain since we left the hospital.

Now the bad news:

Well, it is really less bad news than somewhat frustrating news.

We really don't know any more than when we started our week. Since the trial ended before the medication reached the potential beneficial level, we don't know if it would be a possible treatment for Adam. We don't know if it was the catheter placement that was the problem, or the medication, or perhaps that Adam is very sensitive to a catheter inserted in his spinal column and would've needed a longer time to adjust. We just don't know.

We're not sure yet about the next step--we'll head back to Fort Worth at some point to confer with the doctor. Until then, we're just glad to be home!

If Anything Can Go Wrong...

If you're following our adventure, I apologize for the gap in reporting. It has been a long, strange week, and it appears that even the ending is a little more complex than we had hoped.  Let me catch you up a bit.

After the initial good report following the catheter re-positioning on Tuesday, things just started to go downhill again. He slept well on Tuesday night, but on Wednesday started experiencing more pain. This coincided with an increase in the baclofen dose which may or may not be related. On Wednesday he also stopped feeling up to eating, which clued us in just how bad he was feeling. More pain meds followed with occasional periods of feeling a little better and spending time checking his social media connections via phone and laptop. We even watched a movie, Wreck-It Ralph, which he enjoyed. But the pain kept coming back. He told us on Wednesday that he just wanted to stop the trial and take the catheter out.

Thursday morning was no better, and we shared his wishes with Dr. Marks. He agreed that the pain was not worth continuing the trial, and made arrangements to remove the catheter Thursday at the end of the day. Essentially, we would need to get the dose of baclofen to a level that was double the one he was currently on to determine if it was going to be beneficial, and even if we did that, the pain that Adam was experiencing was going to be likely to trigger muscle tone so we wouldn't learn what we needed to learn. So the baclofen dose was adjusted down instead to allow his body to slowly wean back off of the drug.

Probably the high point on Thursday came when Adam received morphine in advance of the catheter removal, and we saw him the happiest he had been all week! He even shared a joke with the staff, that they should refer to "baclofen" as "back-no-fun" to describe the pain that he'd been experiencing all week in his back as a result of the testing. The plan was that we would be released from the hospital on Friday morning, and begin our return to normalcy, which added to the festive mood.

The actual removal of the catheter went smoothly until the very end, when the tip of the catheter snapped off and remained in his body. An x-ray confirmed the location of the remainder of the catheter and the team determined that it would require a surgical removal which would be scheduled for Friday. As of this writing, we are looking at the surgical procedure to remove the catheter taking place within the next few hours.

Unfortunately, this is most likely going to delay our departure until Saturday morning. They would like to see a more significant decrease in Adam's headaches, and will likely send us home with additional pain meds to continue after departing the hospital.

So...all in all it has been a disappointing, frustrating, and for Adam, very painful week. The doctors have told us repeatedly that they have not seen this series of circumstances take place before, and really don't know with certainty exactly what went wrong. The trial should have been only mildly uncomfortable, the catheter shouldn't have needed re-positioning, the catheter shouldn't have broken upon removal...and ultimately, Adam should not have experienced the miserable week that he has. So maybe now you can see why we didn't rush to keep you updated, we just kept hoping that the situation was going to improve and that we would have some good news to report. At this point, the good news is that we really should be about done here, and should be released tomorrow. But then...this hasn't been a week where the things that were supposed to happen have actually happened. We'll keep you posted.

Storms brewing over Cook's

Last night Adam began to complain more and more about pain in various places (legs sometimes, back a lot and neck and head). He had a pretty bad night and was in a very bad place much of today. We moved to stronger pain killers but the relief was short-lived and he was having trouble with basic activities. It became clear that something was amiss and by midday the doctors were scheduling some imagery (CT scan with dye) to take a look at the catheter position. This is not the usual response to the catheter placement. He was gone from about 3PM-5:30PM getting scanned. By this point he was given some Morphine. The scans didn't show anything clearly problematic but they did back out the catheter a few inches. They had some theories about what might be causing the trouble, but basically they don't really know. But he has been much, much better since coming back from the catheter adjustment. He has been alert and his old self this evening and even now at 9 PM when his earlier narcotics have pretty well worn off, he has only minor discomfort.

Big storms missed us just to the north this evening. And big storms of pain left Adam around the same time. We have yet to get to do any assessment of how the Baclofen might or might not help him. They suspended it for a good chunk of the day and he was in no shape for Physical Therapy testing.

Deja vu 2

We are down at Cook's Children's hospital in Fort Worth again. Last year we tried two different electrode locations with Deep Brain Stimulation. Both showed some promising improvement for a time, but in each case and with each adjustment the trend was for his condition to gravitate back to the baseline. There were a lot of emotional ups and downs.

Last spring it was suggested we try a Baclofen pump. Baclofen is a muscle relaxant used to help control muscle spasticity. It can be taken orally, but typically for strong spasticity as one might find in Cerebral Palsy or Multiple Sclerosis (or Adam), one can't orally take a dose large enough to get the levels needed in the effected muscles. So instead a smaller dose is pumped directly into the fluid surrounding the spinal cord. Before actually inserting the small pump under the skin, the patient's response to the drug can be tested. That brings us to where we are today. Adam had a very short surgery this morning where a catheter was inserted in the fluid filled area around the spinal cord. He can then be given baclofen in a manner similar to having an IV and see how it goes.

This is actually an older more classic procedure than Deep Brain Stimulation. Some doctor's might have done this first, but there are pros and cons. The Baclofen pump is less targeted (for instance, one can't just send the drug to one side of the body). The Baclofen pump has been around a long time and is considered very safely reversible if it doesn't work out.

We have been quieter about this trip than probably any of our others. Experience has taught us to be careful of managing expectations. The surgery itself went fine and Adam has been re-cooperating today. He has had some pain off and on but that is not unexpected. They did start some Baclofen late this afternoon but it is too early to judge things at this point. We are here and tired and we appreciate everyone's thoughts and good wishes. And we are enjoying unseasonably cool, rainy conditions that only happen a few times a century in Fort Worth in July (two consecutive days of highs in 70's with light rain and no sun all day).