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!
Tuesday, July 23, 2013
Friday, July 19, 2013
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.
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.
Tuesday, July 16, 2013
Storms brewing over Cook's
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.
Monday, July 15, 2013
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).
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).
Friday, November 16, 2012
Commencing initial programming...
After the October surgery and the very hopeful signs during the operation, it was difficult to wait until the day when we would return to Fort Worth for the DBS to be turned on. That day finally arrived this week, and we made our way south on Tuesday, Nov. 13. During our multi-hour visit, various settings were tried on each of the four contact points in the new location (STN). The most promising setting was identified, and we saw Adam being able to stand, take steps, and move his arm and hand with more control. Before we left we discussed a return to PT and OT, possible use of braces for his elbow and ankle/leg, and a follow-up appointment in January. We also were instructed in one setting change that we would be able to make at home.
When we left Fort Worth we were cautiously optimistic about the success of this new placement.
The first day after returning home, Adam felt that the benefits from the DBS were holding for the most part, with perhaps less effectiveness noticed by the evening. The second day, he felt that all of the affected muscles had tightened back up, and felt similar to how they had prior to having the device turned on.
While this was disappointing (especially in its similarity to the pattern we saw of initial benefit followed by a return to the baseline during the previous round of DBS), we are all trying to keep a very optimistic outlook and to remember that it is very early in the programming for the new location. We have been told before that the full benefit of the DBS won't likely become evident for a few weeks, and may take several months to a year to fully develop.
For now, we are working on re-starting PT and OT, doing stretches at home, and Adam is very much looking forward to the successful end of his first semester at college!
When we left Fort Worth we were cautiously optimistic about the success of this new placement.
The first day after returning home, Adam felt that the benefits from the DBS were holding for the most part, with perhaps less effectiveness noticed by the evening. The second day, he felt that all of the affected muscles had tightened back up, and felt similar to how they had prior to having the device turned on.
While this was disappointing (especially in its similarity to the pattern we saw of initial benefit followed by a return to the baseline during the previous round of DBS), we are all trying to keep a very optimistic outlook and to remember that it is very early in the programming for the new location. We have been told before that the full benefit of the DBS won't likely become evident for a few weeks, and may take several months to a year to fully develop.
For now, we are working on re-starting PT and OT, doing stretches at home, and Adam is very much looking forward to the successful end of his first semester at college!
Sunday, October 21, 2012
Wrapping things up
By the end of the day Friday, we weren't certain how things were going to play out for the remainder of the weekend. We had been told that there was a chance of being released on Saturday, but since we had stayed for two nights following the previous surgery, that didn't really seem likely. And then when Adam had a seizure Friday night, followed by another one on Saturday morning, it seemed even less likely.
When the on-call neurosurgeon (Dr. Donohue...the same one that had performed Adam's November 2011 surgeries) checked in with us on Saturday, he was concerned about the two seizures, and called for a CT scan to verify that something more dire (hemorrhaging, DBS lead out of place, etc.) was not occurring. At that point, we pretty much assumed that we should settle in for another night.
Adam was feeling much better, and we took the opportunity to get a little exercise by patrolling the halls with Tiger Monkey and Rockem' Sockem' Monkey in tow.
At some point before lunch, the neurosurgery nurse practitioner stopped in and let us know that the scans had been read by the radiologist and that she had been able to peek at them and nothing dire was showing up. That was good news, but we still weren't quite prepared for the visit by Dr. Marks (the movement disorder neurologist) a little bit later who told us that he felt that Adam was ready to go home!
Brian hustled back to the Ronald McDonald House to clean up the room and check out, and by 4:00 pm we were on the road north.
Adam has been released to return to school on Monday as long as he doesn't participate in anything too rowdy, so he will have managed to squeeze in brain surgery on fall break without missing any additional classes! That is some serious dedication to his studies!!!
We won't know for a little time if this placement of the lead will be effective or not. At this point we have a tentative appointment to return for the initial programming on November 13, and we'll be keeping our fingers crossed for good results. We'll keep you posted!
Friday, October 19, 2012
The Hat that Heals? or Whole Lotta' Knittin' Going On
Although not completely finished, the brain hat has already become quite a conversation piece around town! It has been a labor of love that has involved quite a number of people, and I'd like to share the story of how it came to be.
It all started with a photo of a knitted brain hat that Auntie Sharon shared with Adam via Facebook. It was suggested that it would be a worthy project for us, and a rather appropriate one as well! While I entertained the thought of just seeing how close I could come by looking at the photo, I decided to go ahead and see if I could track down the pattern since we were fairly close to the next surgery and it would be fun to have a finished product to wear to his pre-surgery appointments.
Being the savvy searcher of information that I am, I was able to track down the pattern on a stitchery social media site called Ravelry. The pattern was for sale for a modest amount, and since the designer identified herself as a poor med student, I felt inclined to go ahead and pay for the pattern. I even sent a brief message letting the designer know that I was making the hat in honor of Adam's next neurosurgery, and she let me know that she wished us well and appreciated knowing how the pattern was going to be used. If anyone is interested, here is the link to her page: http://www.ravelry.com/patterns/library/brain-hat-knitting-pattern-not-actual-hat (I'm not sure if you can get to the page without an account).
I left the next day for a week long trek to the northwest to visit family, and was able to pick up the supplies I needed at a fun little yarn store in Silverdale, WA. The yarn I found wasn't exactly the "brainy-pinkish-peachish" that Adam and I had discussed, but instead it was a variegated yarn that included a peach color and graduated to a darker red that the lady at the yarn store thought could be a good match for dried blood. I had filled her in on the project I was planning for, as well as who I was making it for and we both agreed that dried blood was an appropriate color to use.
The pattern called for using circular knitting needles which was new for me, but fortunately, Carol's friend Keri was coming over for a craft time and she was able to get me going with this new technique. As I worked away on building up the stitches on the cap, I thought it might be fun to get some other knitters involved in the project and so eventually family and friends Carol, Chad, Jacynda, Matthew, Caleb, Brian, and Susan all added some stitches. Adam also assisted by helping to place and pin the loops to make the brain decoration.
While I was still in the northwest, I talked to Jacynda one day over the phone and explained the project to her. It sounded familiar to her, and she thought that she had seen another student wearing a hat like that at her school. Her medical school. Yep...it turned out that it was the same woman who had designed the hat and posted it online! She is one year behind Jacynda in school, and so they knew each other. Talk about small world coincidences!!!
Although not completely finished (yes, Mike, Adam indeed only had half-a-brain), the hat came down to Fort Worth with us for the surgery, and was indeed proudly worn for the pre-op appointment. Adam's surgeon fully supported our choice of projects, although he did have suggestions about the color (he would have preferred as close to the natural color as possible), and adding specific modifications that would reflect the surgeries that Adam has already had. Adam and I mentioned our idea of sewing a bead on to symbolize the top of the lead that is part of the DBS system--he approved. Adam's primary movement disorder neurologist also approved of the hat, and actually kind of liked the fact that it only had half of the squiggles sewed on, giving it the look of a hemispherectomy. (Oh, those neurologists and their sense of humor!)
I kept knitting on the remaining cord throughout the time that we spent in the surgical waiting area, which is also rather fitting.
So there you have it...the story of the brain hat with all of the people that have played a role in its creation! I hope I didn't forget to mention any names...if I did, please chalk it up to my lack of sleep and not a lack of appreciation! And as to the power of healing that the hat may provide? Well, Adam is feeling much better this evening (post-surgery), so I'm thinking that it has the power of love knitted and embedded into every stitch by many people and that seems to be the best healing agent of all!
It all started with a photo of a knitted brain hat that Auntie Sharon shared with Adam via Facebook. It was suggested that it would be a worthy project for us, and a rather appropriate one as well! While I entertained the thought of just seeing how close I could come by looking at the photo, I decided to go ahead and see if I could track down the pattern since we were fairly close to the next surgery and it would be fun to have a finished product to wear to his pre-surgery appointments.
Being the savvy searcher of information that I am, I was able to track down the pattern on a stitchery social media site called Ravelry. The pattern was for sale for a modest amount, and since the designer identified herself as a poor med student, I felt inclined to go ahead and pay for the pattern. I even sent a brief message letting the designer know that I was making the hat in honor of Adam's next neurosurgery, and she let me know that she wished us well and appreciated knowing how the pattern was going to be used. If anyone is interested, here is the link to her page: http://www.ravelry.com/patterns/library/brain-hat-knitting-pattern-not-actual-hat (I'm not sure if you can get to the page without an account).
I left the next day for a week long trek to the northwest to visit family, and was able to pick up the supplies I needed at a fun little yarn store in Silverdale, WA. The yarn I found wasn't exactly the "brainy-pinkish-peachish" that Adam and I had discussed, but instead it was a variegated yarn that included a peach color and graduated to a darker red that the lady at the yarn store thought could be a good match for dried blood. I had filled her in on the project I was planning for, as well as who I was making it for and we both agreed that dried blood was an appropriate color to use.
The pattern called for using circular knitting needles which was new for me, but fortunately, Carol's friend Keri was coming over for a craft time and she was able to get me going with this new technique. As I worked away on building up the stitches on the cap, I thought it might be fun to get some other knitters involved in the project and so eventually family and friends Carol, Chad, Jacynda, Matthew, Caleb, Brian, and Susan all added some stitches. Adam also assisted by helping to place and pin the loops to make the brain decoration.
While I was still in the northwest, I talked to Jacynda one day over the phone and explained the project to her. It sounded familiar to her, and she thought that she had seen another student wearing a hat like that at her school. Her medical school. Yep...it turned out that it was the same woman who had designed the hat and posted it online! She is one year behind Jacynda in school, and so they knew each other. Talk about small world coincidences!!!
Although not completely finished (yes, Mike, Adam indeed only had half-a-brain), the hat came down to Fort Worth with us for the surgery, and was indeed proudly worn for the pre-op appointment. Adam's surgeon fully supported our choice of projects, although he did have suggestions about the color (he would have preferred as close to the natural color as possible), and adding specific modifications that would reflect the surgeries that Adam has already had. Adam and I mentioned our idea of sewing a bead on to symbolize the top of the lead that is part of the DBS system--he approved. Adam's primary movement disorder neurologist also approved of the hat, and actually kind of liked the fact that it only had half of the squiggles sewed on, giving it the look of a hemispherectomy. (Oh, those neurologists and their sense of humor!)
I kept knitting on the remaining cord throughout the time that we spent in the surgical waiting area, which is also rather fitting.
So there you have it...the story of the brain hat with all of the people that have played a role in its creation! I hope I didn't forget to mention any names...if I did, please chalk it up to my lack of sleep and not a lack of appreciation! And as to the power of healing that the hat may provide? Well, Adam is feeling much better this evening (post-surgery), so I'm thinking that it has the power of love knitted and embedded into every stitch by many people and that seems to be the best healing agent of all!
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