What a difference! The heavy duty narcolepsy drug ("be careful with this stuff, it can make you stop breathing") failed (well, didn't "fail" we just found another thing that didn't work) so we are going to try something different. We both feel good about the chosen course.
Because of all the problems Gretchen was having sleeping the doctor wanted to see Gretchen today. When we got there she was shaky and would have a periodic involuntary spasm of the diaphragm that sounded almost like a cough. He was ready to send her to the ER but she convinced him she didn't need that. The discussion centered around the need to get things under control while getting to the root of the problem.
The neuro/sleep doctor decided we needed to see someone who can diagnose some of the hidden problems associated with the recovery from a traumatic brain injury and find the right treatment plan. We mentioned a doctor that had been asked to consult previously and the neuro/sleep doctor seized on that (apparently they like one another and have worked together before) so as soon as that office opens on Monday they will arrange an appointment. It should be noted that when we met with the consulting doctor before he didn't think he could do anything for Gretchen, of course she was on a bunch of sleep meds that also masked what we hope is the root cause.
The neuro/sleep doctor doesn't want Gretchen to continue on the narcolepsy drug (boy did that cause a panic, one hour is better than nothing) but he wants the new doctor to come up with the right meds and not have to do a bunch of withdrawal (we really don't want that either - in light of how it went before) so he put her on one of the old standby sleep meds that is compatible with a large number of medications. Hopefully since she hasn't been on any regular sleep meds for a couple of weeks this will work fairly well (or at least be an improvement).
One big praise: Once I re-explained what the neuro/sleep doctor was thinking and reminded Gretchen that she was able to sleep when she first got home from the hospital she actually began to lose the shaking (internal and external) and spasms. She knows that she is not going to magically start sleeping through the night but I think that she now sees the hope of a long term solution.
Please pray that Gretchen will be able to rest and maintain that peace that she is feeling right now and that she will be able to get some rest each night (we're not looking for a miracle - though that would be nice - just more than a couple hours so she can see progress). Also, Monday is when we will hear back about the new doctor and Monday afternoon is when our new countertops get installed (remember the kitchen renovation?). The last thing that we need is for the appointment and countertop installation to be at the same time (Gretchen only needs to be at the doctor, I need to be at both and I am not quite that good at multi-tasking).
Also, please let me know if you are reading this and if you want me to continue with updates. You can either leave a comment or use the contact form on the right of the page.
Friday, December 12, 2014
Wednesday, December 10, 2014
Time to reactivate?
I have been pondering posting again for a while now. I think it is time because we need prayer and more miraculous work is being done.
First to get everyone up to date. Much has happened since last I posted.
In fall of 2013 the three of us camped our way across the country to visit my family in Washington. It was a wonderful and devastating trip. Before the trip Gretchen's insomnia was beginning to improve, as was her confusion. The trip put an end to that (and she still hasn't recovered). Seeing my family was good for all of us but there was too little time in Washington and at our stops on the road (well, except the stop in Three Forks, Montana - more about that in a minute). We even had two breakdowns on the road but each time God provided for us, especially in Three Forks where the power steering pump disintegrated right as we pulled into a truck stop. AAA found us a motel and repair shop right across the freeway. We were able to stay past checkout time with no charge (the van wasn't ready yet) and Gretchen got to share the story of her stroke and God's faithfulness with the owner.
Gretchen has continued to improve in many areas, including the confusion that plagued her, but following the Washington trip the insomnia began to get worse. Multiple doctors treated her and gave up. She wound up on so many meds that she was beginning to get some interaction issues. But we plugged on and short of the insomnia and its effects Gretchen was showing incredible improvement.
Summer of 2014 saw the beginning of a kitchen remodel (it was really just a refrigerator replacement that got out of hand) and a trip by the boys to Oshkosh, WI for Airventure - a week camped out under the ultralight pattern by the airport. Gretchen held up really well. The insomnia was still a problem but once she was asleep no one was there to wake her. A week after our return the three of us headed to Michigan for a weekend with her dad's side of the family. She sang at the reunion and everyone was astounded by how well she was doing. As a result of her stroke she is even closer to these distant relatives.
One thing I haven't mentioned. Not long after she was home Gretchen got started on Facebook. I was not in favor but accepted it. I cannot deny the miraculous re-connections that have happened through her stroke and Facebook - many people who may or may not have been Christians when Gretchen was in school with them are now talking about matters of faith and her faith has been a solid influence on many people.
I mentioned the multiple doctors trying to help with insomnia. One of the last ones was a compromise when she couldn't get the one that was recommended to her (he wasn't taking new patients). After a few visits we were getting fed up with him and made another try to get in to the one she wanted. Miraculously she got in. Turns out, the doctor we were fed up with was closing his practice with no explanations (we like to think her case drove him over the edge).
The new doctor has taken Gretchen off the sleep meds and is trying a narcolepsy drug that shuts the brain off at night so that it stays awake during the day. The weaning off was scary but God brought her through that and the week of nothing. We are now almost at full dosage and still quality (or quantity) sleep eludes her (she has averaged less than an hour of sleep a night for the last two and a half weeks). She is on the verge of a breakdown and yet her focus is on ways to help her friends who are suffering.
Please pray that Gretchen will be able to sleep. God allows her to function and appear normal to most people (some can't believe she is as exhausted as she claims) but several times a day she completely falls apart. Please pray for Peter because watching your mother go through sleep deprivation has got to be difficult. Through all of this God has sustained me and I have marveled and been touched by Gretchen's faith through all of this (she lost the dear friend that lowered her blood pressure with a touch - see the August 14 section of the "Copied from GoogleDocs" post - and I have told Gretchen that she has become that person to some of her friends who are struggling/suffering).
First to get everyone up to date. Much has happened since last I posted.
In fall of 2013 the three of us camped our way across the country to visit my family in Washington. It was a wonderful and devastating trip. Before the trip Gretchen's insomnia was beginning to improve, as was her confusion. The trip put an end to that (and she still hasn't recovered). Seeing my family was good for all of us but there was too little time in Washington and at our stops on the road (well, except the stop in Three Forks, Montana - more about that in a minute). We even had two breakdowns on the road but each time God provided for us, especially in Three Forks where the power steering pump disintegrated right as we pulled into a truck stop. AAA found us a motel and repair shop right across the freeway. We were able to stay past checkout time with no charge (the van wasn't ready yet) and Gretchen got to share the story of her stroke and God's faithfulness with the owner.
Gretchen has continued to improve in many areas, including the confusion that plagued her, but following the Washington trip the insomnia began to get worse. Multiple doctors treated her and gave up. She wound up on so many meds that she was beginning to get some interaction issues. But we plugged on and short of the insomnia and its effects Gretchen was showing incredible improvement.
Summer of 2014 saw the beginning of a kitchen remodel (it was really just a refrigerator replacement that got out of hand) and a trip by the boys to Oshkosh, WI for Airventure - a week camped out under the ultralight pattern by the airport. Gretchen held up really well. The insomnia was still a problem but once she was asleep no one was there to wake her. A week after our return the three of us headed to Michigan for a weekend with her dad's side of the family. She sang at the reunion and everyone was astounded by how well she was doing. As a result of her stroke she is even closer to these distant relatives.
One thing I haven't mentioned. Not long after she was home Gretchen got started on Facebook. I was not in favor but accepted it. I cannot deny the miraculous re-connections that have happened through her stroke and Facebook - many people who may or may not have been Christians when Gretchen was in school with them are now talking about matters of faith and her faith has been a solid influence on many people.
I mentioned the multiple doctors trying to help with insomnia. One of the last ones was a compromise when she couldn't get the one that was recommended to her (he wasn't taking new patients). After a few visits we were getting fed up with him and made another try to get in to the one she wanted. Miraculously she got in. Turns out, the doctor we were fed up with was closing his practice with no explanations (we like to think her case drove him over the edge).
The new doctor has taken Gretchen off the sleep meds and is trying a narcolepsy drug that shuts the brain off at night so that it stays awake during the day. The weaning off was scary but God brought her through that and the week of nothing. We are now almost at full dosage and still quality (or quantity) sleep eludes her (she has averaged less than an hour of sleep a night for the last two and a half weeks). She is on the verge of a breakdown and yet her focus is on ways to help her friends who are suffering.
Please pray that Gretchen will be able to sleep. God allows her to function and appear normal to most people (some can't believe she is as exhausted as she claims) but several times a day she completely falls apart. Please pray for Peter because watching your mother go through sleep deprivation has got to be difficult. Through all of this God has sustained me and I have marveled and been touched by Gretchen's faith through all of this (she lost the dear friend that lowered her blood pressure with a touch - see the August 14 section of the "Copied from GoogleDocs" post - and I have told Gretchen that she has become that person to some of her friends who are struggling/suffering).
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