Saturday, March 27, 2010

Oh what a night

Well, what an interesting turn of events; last night after I got home I was just about to lay down to sleep when the home phone rang. It was 3am, and I immediately knew that whoever was calling was not calling with good news. I picked up the phone and saw the called ID had a Mayo Clinic number, my stomach dropped like I had just swallowed an anvil. I said “Hello”, and that is when Sarah began telling me how things had slowed down for a while, then progressively became worse. She went on to tell me that the Dr.’s again told her they had no idea what was going on and that his unresponsive state was of concern. X had been waking up periodically, screaming at the top of his lungs, then falling back asleep; they were unable to shake (Not literally) him out of it, and Sarah said I should try to come up.

After explaining things to my parents, who were staying the night to watch the Twinkies, I grabbed a bag, threw a few clothes in it, kissed the boys and headed to my truck. I hopped on the interstate, called a few friends, asking them to pray; Sarah called me about 30 minutes into the drive and we spoke some more. About an hour into the drive my sleep depravation hit me and I started to struggle to stay awake. Having been on numerous road trips I have developed some interesting methods to stay awake, they all worked until I was 5 miles from Des Moines. I knew that I wasn’t going to make it so I pulled over, I am still unsure where, found a lonely gas station and parked in the back corner. I fully expected to wake up by daybreak and did not set my alarm, I also was so tired I fell asleep without locking my doors (smart, I know). When I woke up it was 8:40 and people were parked close to my truck and walking nearby, I can only imagine what they were thinking. Being slightly embarrassed, but indebted to the gas station I refueled and continued on.

I made it to the hospital at 11:40 and entered to room to a sweet boy and an exhausted Mother, hugs and kisses, then more explanation of what had occurred the last 24hrs. When I first heard of what had happened I immediately thought X was having some type of withdrawal from the OxyCodone and Morphine, Sarah did not address that because she was told it was a night terror and the meds made it harder for him to break out of it. They also said he was unresponsive afterward because of the medications, one of the Dr.’s was annoyed at the fact he was still getting these painkillers on a consistent basis. I spoke to another Dr. about my concerns, and he did say that, while it was unlikely he was having a withdrawal, it was very likely that his extremely odd behavior was due to the medications he was getting. They have since stopping giving him those meds, although they take a while to fully exit the body, and he is now only on Tylenol.

I laid with him on his bed for about 7 hours, just holding him and loving on him; his face is still swollen, but he is handsome as usual. Sarah told me that when he wasn’t waking up screaming he was waking up asking if I had made it to the hospital yet, when I hear things like that it makes me never want to leave his side. Things seem to be much better now, he has been staying awake for longer periods of time, which is essential in our quest to leave this place, and his spirits seem to be much better.

With me being here now, Sarah has been sleeping for about 4 hours, she actually just woke up, and asked me “Where’s Katie?” Katie is her sister, I said “What?” she then said in a very annoyed tone “WHERE”S KATIE?” I said “She’s not here yet”, she replied “Oh” then went to sleep. I laughed for about 5 minutes after that because she used to do things like that all the time when we first got married. We actually got into a huge arguement after she woke up (or so I thought she did) and began having a conversation with me, it went bad fairly quick and we were arguing for about 5 minutes before she started crying. I was so annoyed, and impatient, that I ignored her and went to sleep. The next morning we talked about it and she told me that she sleepwalks and has conversations in her sleep, I knew she did the whole sleepwalking thing, although I had pictured it much differently, eyes closed and arms out. What I did not know was that she could have a halfway coherent conversation while sleeping. We ended talking it out, laughing and telling all our friends about our crazy night. I have to admit I wanted to mess with her after I figured out that she was sleep talking, instead I let her sleep, next time it will be different.

I think the most frustrating part of this whole thing is our neurology team is gone, all but one. They all took vacation at the same time, and it is now the weekend so we have to deal with others who have only read about X, and do not really know us, or him. We were expected to leave by Monday, however, I am sure that is going to be pushed back now due to recent events.

Someone asked me if I was mad at God, I told them I wasn’t, although I could see how someone in my position could be. It is beyond aggravating to see your child suffer, and continue to have things not go the right way; but I am confident that in years to come I will be able to see how the glory, peace, love and strength of God was in our lives. If I was a songwriter I would write a song about it in effort to praise him, instead I blog, although I wish I could do it more justice. If anything this time in our lives has only deepened my faith, and driven me to seek his face with more of a desire to hear what he may be trying to tell me/us.

To my friends who have walked this trial with us; thanks, I know that when we hurt, you hurt, and that when we rejoice you rejoice, I am confident that the end is near, and we will be home soon. I think that, while there may be answers, yet unknown to us, of why this last episode occurred; I cannot help to wonder if it is a final assault on us to make us turn from God, even for a moment. I am grateful, and eternally indebted to you for helping me/us keep focused and press on, thanks for sticking this one through with us.


  1. Yes, the end is near. Yes, you will one very distant day in the future look on this arduous ordeal and think, feel, see His glory and peace through it. Right now your focus is get ALL well (that means you and Sarah, not just Xander) and get home. You all need to be home as your family unit and be doted upon with love, food, caring and prayer! You need to think about fun things to do at home that are completely unrelated to hospitals, surgeries, epilepsy and seizures! Trust me on this. And as hard as it will be, and it will be, you and Sarah need to go out to dinner without your boys. Trust me, I for one, know how guilty this will feel, but you need to do it for for marriage and Xander and the twins - you will be better parents for them. And as a woman, let my say, Sarah needs it!!! Love, your sister in Christ, Jan in AZ

  2. Thanks Jan, we are def. taking your advise; it's good to hear from you. I hope all is well with your family, and we are still praying for you guys.