Sunday, August 10, 2008

The Dr. didn't believe us...

So we were back to the ER again Saturday afternoon with little Drew.  We had increased his two anti-seizure meds Friday at the neurologist's direction so I expected him to be a little dopey Saturday, but he was really dopey. Saturday afternoon his eyes started deviating to the left and he wouldn't look at us or at things we put on the right side of his head.  It was like he could hear them but wouldn't look over there, or couldn't!  His eyeballs were wiggling too - and I'm pretty sure he wasn't doing it on purpose.  Anyway, he seemed conscious but very out of it.  We called the neurologist on call (fortunately at this point we have 24 hour access, thank God) and he said he would like to see Drew so we loaded up and off Drew and I went to the ER.  We got to the ER and the nurses quickly noticed he was seizing and started calling for doctors.  I was calmer than they were amazingly.  The doctor came in and started asking questions, "How long has he been having this seizure?"  I answered that it had been about 11 weeks or so and he said, "No.  How long has he been having THIS seizure?"  I answered again that it had been about 11 weeks.  He was having a hard time understanding me.  I then explained that this was a new variation but that it hadn't stopped in 11 weeks or more.  He was getting a little frustrated with me at this point I think and kept rewording his question to see if he could get a different answer.  The best part of the situation was when one of Drew's neurologists finally walked in during this conversation and the ER doctor turned to him and asked how long Drew had been seizing and the neurologist said, "About 11 weeks."  It's really amazing where you find opportunities to laugh in the middle of all this, but that seemed like a good one to me.  I had to hold the laugh til later though.  The ER doctor was a great doctor, he just didn't know what to think of the situation.  He was ready to put Drew into a coma and intubate him (breathing support) to try to stop it - I was sure glad the neurologists came quickly!  If they hadn't come quickly enough I think they may have arrived to see me wrestling the nurses and doctors to keep them from doing that to Drew!  At this point, that's the last thing he would need.  It would put him back that much further in his development and as much as they hoped that would stop the seizures, so far any time we have anesthetized him his seizures start right back up when he wakes up.  If we thought that would work we would have done that a long time ago!

Speaking of time, it occurred to me that it has been three months now since this all began.  Usually I feel as though time has been flying, but April feels like it was years ago.  What a mind trip this has all been.  Some days feel like way more than 24 hours! 


ERucker said...

Jordan and Kari,
This is Erick Rucker from Dallas, TX. Erin Lonard is my friend. Mendy, my wife, and I have been thinking about you ever since Erin told us about Drew. I am sure she told you that we have a daughter that has many of the same symptoms as does Drew...including, Seizures(many different kinds)including Infantile Spasms, Hypotonia, blindness, severe developmental delay. We have been seeing a mitochondrial specialist here in Dallas and my see one at Mayo Clinic in Minnesota. Our daughter, Lilly, has had MRIs, EEGs, VEPs, Spectrocopys, spinal taps and a muscle biopsy. To date, the doctors have been able to determine a diagnosis...but they do suspect mitochondrial disorder or some type of metabolic disease.
We feel very deeply for you and your current situation. We feel very blessed that we have not had to endure much of what you have. I cannot imagine having gone through what you have in such a short time. You guys are truly amazing!
Lilly's problems have progress much more gradually and, while hard, have not been as traumatic as your events. We have never really had anything but a newborn...but you have had to watch this happen to a guy that was developing within normal ranges....we are so sorry.

Before this gets to long, I did want to share with you that we have had some success with controlling Lilly's seizures...with steroid injections (I was wondering if you all have tried ACTH?). Also, we have found a therapy that might give some hope...It is called Hyperbaric Oxygen Therapy or HBOT. It is pretty "non-mainstream" but it has given some children their life back.
I would love to be able to get with you all by phone to swap stories, suggestions, struggles, etc... please feel free to call me (Erin has the number) or send us your email address (I believe you have ours) or phone number (We can call you for free).
We have only made it this far because of the tremendous support we have received from our family, church family, and all of their are probably the same. We would love to be some small part of this support, for you guys.
Erick Rucker

Nicole said...

Good work, SuperMamma, at telling the Doctor what was really going happening. I think it was good you held your laugh till later, but I sure couldn't while I was reading this. You're the best.