Stretch to Home

Elias playing with his Kermit shortly after we arrived home

Thankfully Elias is home! We came home yesterday evening, but it almost did not happen. The IV antibiotics which Elias had been on to treat him is high in toxicity. Trough levels drawn on Monday morning were above his peak. The plan had been to send us home on the IV drugs as Elias has the central line and we have been trained to administer via this route. The problem with the high levels meant the would need to check them prior to each dose, which essentially would mean that we would have to sit in the hospital for 7-10 days while the course continued. Fortunately for us Elias primary care physician - which is a paper pusher for him essentially - refused to manage the follow-up care for home IV antibiotics. After all he has only seen Elias twice ever and the last time was April 2010. This brought the infectious disease team into the picture. They would be the ones to manage his home IV therapy, which is odd because we never had that problem or need before, but it actually proved to our benefit so we are not complaining. They came in and did a very intensive interview and review of Elias' medical history (it took awhile as you can imagine). There recommendations were rather eye-opening and opens up a whole new set of issues. They felt that Elias was recovered enough to no longer need the IV antibiotics. With that in mind, while meningitis was the only revealing result of the tests, the fact that he had recovered so quickly and there were no other symptoms prior to the seizure leads them to doubt that this was a true meningitis. They can not say for certain, but the factors are not consistent enough. That opened the door to come home since Elias was at his baseline. Should Elias present any symptoms then it should be treated as a new case and start over. This justified medically his discharge. Why this opens up new issues is now we have to continue to treat and be concerned about future seizures. With a confirmed undeniable meningitis that would be enough to cause the seizure and make the doctors feel confident it was isolated. Now that is not so clear. So we come home with new concerns, new worries, more medicine and new protocols along with more emergency procedures. It is just another phase that we can hopefully rule out with some follow-up. We have dealt with new worries and concerns many times before and have always overcome the fears and Elias has always been amazing with recovering.

One thing we have learned about Elias is that he has this ability to bring out the best in people, particularly us. We are constantly amazed at how much we can handle, but simply looking into his eyes and witnessing that smile provides incredible strength. It may not be an easy road and often we wonder can we continue or how we can continue, but his strength and determination is brilliant and motivates us. We have several follow-up appointments coming up very soon so we should have some more updates on this scenario soon. Right now we are trying to get back into the swing of things here at home and enjoying time as a family. Thank you all again for the support and prayers, they certainly were answered.