Update on Maegan (Sorry, long post)
For those of you who may not know, my wife Maegan has some sort of a neuro-muscular disorder. Although we do not have a definite diagnosis, the neurologist believes that she has neuromyotonia (also known as Isaac's Syndrome). This has become part of her every day life and we are learning to lean on God because we are so helpless on our own.
So this past Tuesday started off just like any normal Tuesday should. Around 3:30 that afternoon, Maegan called and asked that I come home and help her. Apparently my wife is so tough that she had a migraine headache for 2 days and hadn't once complained. I had no idea! I called her doctor and got some perscriptions filled for the pain and nausea.
With not even enough time passed for the first doses to kick in, Maegan started feeling an extremely painful electric shock through the muscles in her left leg. She equated the pain to the feeling that one gets when sticking a finger in an electrical outlet. Ouch. She ignored the first one, but the second and third were too much to handle. She tried standing and walking, but nothing she attempted would stop the inevitable shock.
It was now after 6:00pm and the doctors were all away from their offices, but I tried anyway. The answering service assured us that we would receive a call back but we couldn't sit around and wait. We went to the ER and had her in a room by 7. After explaining 1000 times that we had no clue why she hurt, she finally got some relief from IV pain medicine. For the next 7 hours we sat in a cold, hard, sterile room and waited to hear back from the doctor about the lab work they had done.
Finally, around 2am the nurse came and told us that they wanted Maegan to stay the night so they could continue to monitor her progress. By the time all of the details were worked out and we were in our cozy little slice of paradise, the clock said 3:30am. Nurses came in a couple of times over the next 3 hours to draw blood and make sure that Meagan wasn't sleeping. Ok, so that last part may not be true. I know they have a job to do...but seriously...can it wait til morning?....digressing....
After an incredibly restful night (sarcasm intended), Maegan's primary care doctor came in around 7:00am. This whole Isaac's Syndrome ordeal has been handled by a totally different doctor and so the details haven't been shared at all. Every time a new nurse or doctor comes into the room we have to start all over again.
The doctor also expressed concern for the potential risk of addiction from the pain meds that they have Maegan on. Although he is right, his advise came at the absolute worst time. She tried to go an extra hour longer without the morphine and wound up with the same unbearable electric pain she experienced that had brought us here in the first place (a 10 on a scale of 0-10). It took the rest of the day to get her muscles under control. The rest of Wednesday was relatively uneventful. We napped a bit and watched a lot of TV.
That evening, Maegan's neurologist came by to check on her. He is the one who presented Isaac's as a strong possibility and got us going in the right direction. He is also pushing to get us into a stronger program at Houston Medical Center. Maegan gave him a recount of the leg pain (which is now turned into back and neck pain) and he decides to change up some meds and see if any progress will be made. Maegan's friend Hannah Wier came and stayed with her so I could get some rest and go back to work.
Today was a lot like Wednesday. I came back up to the room around noon and Maegan was up but feeling nauseous. This has been coming along with the pain every couple of hours since she got here. The nurses have all been taking great care of Maegan and although they may not understand why she is hurting, they sympathise because they can see that she is in pain.
Around 5:00pm they came up and rolled her away to have an MRI done on her back. Fortunately, the results came back clear. This has been the trend for every test done so far and although it is great news, it is frustrating to not know anything new. Every test over the last year has come back perfectly clean and clear and yet there is something definitely wrong with Maegan.
Another one of the frustrating parts of this whole ordeal is the fact that I can't do anything to make it better. I have to say I have gotten pretty good at "makin' it better" for my wife whenever she doesn't feel good, but when it comes to this, the only thing I can do is watch and pray. I believe this is God's way of teaching me to stop getting in the way and trust Him totally. I don't like it, but I just have to get over it. I just can't carry her on my own.
We are both learning to trust God in a deeper way than we ever have before and it has strengthened our relationship in ways that I didn't expect out of our first year of marriage. I feel small and weak, but I can trust that God will carry us all the way through this. Thank you for your prayers, love, encouragement and support!
-God Bless!
Philip and Maegan
So this past Tuesday started off just like any normal Tuesday should. Around 3:30 that afternoon, Maegan called and asked that I come home and help her. Apparently my wife is so tough that she had a migraine headache for 2 days and hadn't once complained. I had no idea! I called her doctor and got some perscriptions filled for the pain and nausea.
With not even enough time passed for the first doses to kick in, Maegan started feeling an extremely painful electric shock through the muscles in her left leg. She equated the pain to the feeling that one gets when sticking a finger in an electrical outlet. Ouch. She ignored the first one, but the second and third were too much to handle. She tried standing and walking, but nothing she attempted would stop the inevitable shock.
It was now after 6:00pm and the doctors were all away from their offices, but I tried anyway. The answering service assured us that we would receive a call back but we couldn't sit around and wait. We went to the ER and had her in a room by 7. After explaining 1000 times that we had no clue why she hurt, she finally got some relief from IV pain medicine. For the next 7 hours we sat in a cold, hard, sterile room and waited to hear back from the doctor about the lab work they had done.
Finally, around 2am the nurse came and told us that they wanted Maegan to stay the night so they could continue to monitor her progress. By the time all of the details were worked out and we were in our cozy little slice of paradise, the clock said 3:30am. Nurses came in a couple of times over the next 3 hours to draw blood and make sure that Meagan wasn't sleeping. Ok, so that last part may not be true. I know they have a job to do...but seriously...can it wait til morning?....digressing....
After an incredibly restful night (sarcasm intended), Maegan's primary care doctor came in around 7:00am. This whole Isaac's Syndrome ordeal has been handled by a totally different doctor and so the details haven't been shared at all. Every time a new nurse or doctor comes into the room we have to start all over again.
The doctor also expressed concern for the potential risk of addiction from the pain meds that they have Maegan on. Although he is right, his advise came at the absolute worst time. She tried to go an extra hour longer without the morphine and wound up with the same unbearable electric pain she experienced that had brought us here in the first place (a 10 on a scale of 0-10). It took the rest of the day to get her muscles under control. The rest of Wednesday was relatively uneventful. We napped a bit and watched a lot of TV.
That evening, Maegan's neurologist came by to check on her. He is the one who presented Isaac's as a strong possibility and got us going in the right direction. He is also pushing to get us into a stronger program at Houston Medical Center. Maegan gave him a recount of the leg pain (which is now turned into back and neck pain) and he decides to change up some meds and see if any progress will be made. Maegan's friend Hannah Wier came and stayed with her so I could get some rest and go back to work.
Today was a lot like Wednesday. I came back up to the room around noon and Maegan was up but feeling nauseous. This has been coming along with the pain every couple of hours since she got here. The nurses have all been taking great care of Maegan and although they may not understand why she is hurting, they sympathise because they can see that she is in pain.
Around 5:00pm they came up and rolled her away to have an MRI done on her back. Fortunately, the results came back clear. This has been the trend for every test done so far and although it is great news, it is frustrating to not know anything new. Every test over the last year has come back perfectly clean and clear and yet there is something definitely wrong with Maegan.
Another one of the frustrating parts of this whole ordeal is the fact that I can't do anything to make it better. I have to say I have gotten pretty good at "makin' it better" for my wife whenever she doesn't feel good, but when it comes to this, the only thing I can do is watch and pray. I believe this is God's way of teaching me to stop getting in the way and trust Him totally. I don't like it, but I just have to get over it. I just can't carry her on my own.
We are both learning to trust God in a deeper way than we ever have before and it has strengthened our relationship in ways that I didn't expect out of our first year of marriage. I feel small and weak, but I can trust that God will carry us all the way through this. Thank you for your prayers, love, encouragement and support!
-God Bless!
Philip and Maegan
Labels: hospital, Isaac's Syndrome, Maegan, update
posted by p-melt at
4:19 PM
2 Comments:
Philip. I am so proud of both of you ! Since before you both said your "I do's" I knew your commitment to each other was huge. I wish I could be there to give you both a huge hug and help if I could. Please don't hesitate to call if I can do ANYTHING. Know I am praying for both of you. Sometimes in life there are small challenges and sometimes large..God is aware of them all. You know that,however, what I have found is that the larger ones pull us closer to Him because like you said you are helpless.We have to totally trust Him !! They also teach us alot along the way ! This is why God says don't lean on your own understanding and in ALL your ways acknowlege Him and He will make your path straight. He's got it all under control....REST IN THIS !! I am going to have my oldest daughter Misty read your blog and see if anyone she knows may have information on any of this. She is a ICU nurse and also has a sister-in-law who is a RN and teaches nursing. Hang in there, and know you and Megan are lifted up daily in my prayers !!
In Him, Kim Tye
Wow! What an ordeal...we are definitely praying for both of you.
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