Update from Angel
Caleb’s back home!
We have been overwhelmed by all of the love and support. Thank you so much for your concern and generosity. Many people have had questions and wanted to know more. Here is the whole story for those of you that are interested…
When he was just three weeks old Caleb contracted viral meningitis. There’s no cure for that. He was left with severe brain damage. The doctors said that he could live to be 80 or die tomorrow. They said he wouldn’t walk or talk because he wouldn’t know the difference between point A and point B.
Although life is rough for Caleb, he has been fairly healthy and very happy for the past 16 years. He doesn’t “walk or talk” but he definitely knows the difference between point A and point B. He knows a lot. A lot more than a lot of us, actually. He lives in the moment. He smiles more than most. He now uses a communication device to “talk.” He’s able to choose between hundreds of things to say (via a computer generated voice) that are specific to his life. He has a lot to say. He’s charming, funny, and tenacious. He doesn’t walk, but he is determined to drive a power wheelchair. He mentions it often and will not give up.
The damage to Caleb’s brain causes spasticity. Caleb’s muscles are so tight that oral muscle relaxers are not enough for him to be comfortable. For the past five years Caleb has had what’s called a Baclofen pump. This device was implanted in his abdomen and delivers the medication straight into his spinal fluid. This allows him to tolerate 10 times the dose of medication that he could have orally. It has worked well for him. But, the pump has a battery life of only five years. So, at the end of summer, Caleb had to have the device replaced with a new one. He recovered quickly, but about three weeks later the incision was infected. Caleb had to have the pump removed immediately. That’s what started his recent six week stay at Children’s Hospital.
Coming off that much medication should take weeks. Caleb had one day. After a day of anxiety, spasticity, and pain Caleb was put in a medicated coma. He had some short lived breathing problems but no more pain. A couple weeks later Caleb woke up as those drugs were slowly weaned from his system. As soon as he started smiling, again, he got to go home. But, Caleb’s stay at home was short lived. As the medications continued to wear off, he was back to being extremely spastic, anxious and in a lot of pain. It was back to the Children’s Hospital for another 10 days. They think they’ve finally found just the right doses of just the right medications for him. He’s feeling good and back at home! Yay!
Caleb has to wait another 6-8 weeks before he can have a new Baclofen pump implanted. Hopefully, that will be a short stay in the hospital and then he can go back to doing all of things that he enjoys.
Thank you, again, for caring.
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