Prayers needed...

[Falconpilot5]

Ted had been doing wonderfully and making good progress...however this morning he experienced a very major setback and is in need of a lot of prayers...

"Ted was lifeflighted back to St. Luke's today.

He was at home on the couch, watching TV and waiting for his speech appointment. At 10:24, I heard some very loud, labored breathing -- and assumed Ted was teasing Butch. I stuck my head around the corner and saw that Ted was in the middle of a grand mal seizure.

Many of you know that Ted has Juvenile Myoclonic Epilepsy, diagnosed the summer before his senior year of high school. It's been very, very well controlled, and the diagnosis was made by the fact that his hands would twitch upon awakening abruptly or very early. He's only had one grand mal seizure (precipitated by getting up super-early to go on a school trip) and once his meds were adjusted, he's never had so much as a single twitch in the last three years.

Initially, he was breathing, but I decided to call 911 anyway and literally in that instant, he quit breathing. I performed CPR until the paramedics (and Boo) arrived. Ted was unresponsive and had no pulse by the time they arrived. They had to defibrillate (shock) his heart back into normal sinus rhythm. He was taken by ambulance to Salina Regional Health Center ER and got a thorough evaluation there. Seriously, everyone was absolutely great -- at the top of their game -- and the decision was made to transfer him via helicopter back to St. Luke's. He was intubated (and remains intubated) and is on a ventilator.

So we did a whole repeat of racing to Kansas City behind the helicopter. Cousin Elizabeth and her partner Nicole and Uncle Ed and Aunt Jessica were waiting at St. Luke's. Initially, he went to the cath lab so they could do an emergency biopsy of his heart to check for acute rejection. The preliminary path report came back about the same as last week's but we won't have definitive answers on that score until tomorrow. That will help the doctors decide exactly what precipitated the seizure and ensuing heart damage: Did a JME-related grand-mal seizure cause him to get hypoxic and go into an abnormal rhythm? Did the abnormal rhythm cause him to get hypoxic, prompting the seizure? Right now, the cardiologists are leaning toward an acute rejection, as the seizure does not fit JME parameters, and they are pursuing a very aggressive course of anti-rejection drugs and steroids.

As a precaution and to support his heart (which has an ejection fraction of only about 30% right now), the doctors decided to put him back on ECMO -- similar to the bypass machine used during heart surgery. You may recall that Ted was on ECMO for 11 days when he arrived at St. Luke's in June to get him stable enough to survive the BiVAD surgery.

Issues for the days ahead: Has Ted been compromised neurologically by the lack of oxygen? We won't know until they allow him to wake up -- which might be tomorrow. Can his new heart recover from this episode? It showed some improvement from the first echo to the second today, but not a lot. How will he tolerate the anti-rejection regimen? It's pretty intense. The next few days should give us more answers, so it's back to being patient. This is not a common presentation of acute rejection, so we just need to hang in there and hope and pray for the best.

Please, once again, keep us in your prayers."

[thailek]

This is so sad.

Please send my best wishes and my most heartfelt prayers to Ted and his family and friends.

Also, please keep us posted.

[Falconpilot5]

The news from Kansas City is much better today.

After exhaustive examination of Ted's biopsy samples from yesterday, the conclusion is that Ted's rejection maintains steady at a 1B level. There is no sign of rejection in terms of antibodies or T-cells either. So what that means is that this event was probably not caused by an acute rejection. As a precaution, he was started on a very aggressive five-day anti-rejection protocol (thymoglobulin and solumedrol) yesterday and he will finish the remaining four days of that regimen (provided he doesn't have a reaction to it). This regimen could get his rejection level down to a "0" or "1", but will further suppress his immune system for the next three months.

So the source for all this must be the seizure itself. Ted's Salina neurologist Trent Davis, his Johns-Hopkins neurologist Gregory Bergey and the staff here are absolutely positive that Keppra does not interact with any of his anti-rejection drugs. However, the pharmacy's substitution of the generic equivalent for Keppra (which we did not catch) is most likely the culprit.

Generics only have to perform at a 15% range higher or lower than the actual name-brand drug, which gives you a 30% margin of error. Also, there are several different manufacturers of the generic Keppra and all of them have different formulations -- so the generic you get from month to month at the pharmacy can vary considerably, too.

On echocardiogram today, his heart shows significant improvement. Doctors and transplant coordinators are very confident that it will be fine. Ted was extubated this morning and will have the ECMO removed tomorrow. Neurologically, he appears to be fine (remarking that the ECMO machine is not very ergonomic and that Apple could design a better one). He'll remain in the hospital for the remainder of the anti-rejection regimen and probably be home at the beginning of next week, provided we don't hit any more complications.

[nlm2183]

Good to hear he is doing better. I pray all will go well with him, every step of the way.

[MartinaE]

Wow, this was a shocker to read!!! It is really good to read he`s doing better again already!!!!!!!

[Falconpilot5]

Ted's back home again. They implanted a defibrillator in his chest just in case something happens again. His magnesium seems to be chronically low and they're trying to fix that, but everything else seems in order.

[thailek]

Please send Ted and his family my best.

Thank you so much for the updates.

*hug*

You're great

[inbarstalderfull]

Wow, I'm so glad to hear your friend is doing well! My most heartfelt thoughts go out to him, his family, and everyone who loves him. He's lucky he has such a good support system in a time like this. You're a great friend!

[Hope2008]

I'm very glad he's better again. I'll keep him in my prayers.

[Falconpilot5]

Good news, everything is going well.

Ted aced his last rejection test...meaning the level of rejection from the latest biopsy came back as a 0, which is as low as it gets! This is great considering the issues that he had just a few weeks back.

The little bit of bad news is his CMV (a virus) is back. The virus is common and most people are infected by it sometime during their life. Once you come down with it, it can go dormant for a while before resurfacing. CMV remains in the body throughout a lifetime. Ted's currently not experiencing any symptoms, but his anti-viral meds have been increase just in case.

From the notes his mother updates, it sounds as if his physical therapy and occupation therapy are going well. He's able to take a walk around Lakewood Park on a path that is over a mile long without stopping! Ted is also having speech therapy daily and is improving in on that territory as well.
Worksheets and exercises that were extremely difficult before his transplant have become much easier. He's still much more comfortable texting and e-mailing than speaking on the phone. The thing I find sad about this part is Ted was an excellent speaker in high school. He went to state mutliple times for Forensics and Speech. Hopefully he'll get back there soon.

That's all, just thought I'd update everyone. Updates from his mom are much less frequent because he's doing so much better and daily updates are necessary. But keep praying for him and he continues to get better.