First of all, I have to say that Elijah has THE BEST doctors on the planet. If we researched all pediatricians, specialists and therapists in the world, we could not possibly hand pick better care for our little boy. His pulmonogist, Dr. K, is no exception. He is a knowledgeable, compassionate, thorough doctor. At today's visit, he asked us an extensive list of questions and he was able to assess Elijah's croup and explain it to us in detail. He asked questions about Dan and me, and showed genuine interest in all of us. We even chatted about the new addition to Children's Hospital and how the CARDIAC-ONLY intensive care and recovery units will be done by next summer. This is awesome news for us! Anyway, I digress... Here is what we learned today:
Elijah has "recurrent severe viral croup." This is (of course) the worst kind to have. Only one in around forty or fifty kids with croup get it as severely as he does. He seems to have crazy odds like that on a lot of things. I'm thinking he might win the lottery some day. Or make it on Survivor.
The one good thing about this diagnosis is that since his croup episodes have always been linked to respiratory infections, we can be somewhat prepared for the possibility of an episode occurring. We can usually tell when it might happen, based on his cold symptoms and what stage the cold is in. If our instincts tell us that he might have an episode, we are to give him a nebulizer treatment with a high dose of pulmicort and a dose of oral steroids before bed. This will hopefully prevent an episode from happening. If we don't see it coming and he surprises us with an episode in the middle of the night, we are to immediately give him oral steroids and a high-dose pulmicort neb treatment. If it doesn't get better after a few minutes, we are to give him a dose of racemic epinepherine, also through the nebulizer. This is what they use in hospitals to treat croup. It relaxes the bronchial smooth muscle, helping air to get through the windpipe and airway more easily. If the epinepherine doesn't help, then we call 911.
I love having a plan. I also love having a medical professional truly understand how frightening and serious these episodes are. I also love that Dr. K trusts us enough to give us these medications that aren't usually given out so freely, and that he trusts us to use them appropriately. He said that croup is scarier than almost any other "normal" child illness, and I definitely know what he means. I think I have stressed out more about this than I have about Elijah's heart. Ok, maybe not, but it definitely comes in second.
Ironically, Elijah's cold stepped up a notch today. He coughed off and on for an hour before I got him out of bed this morning. Tonight could possibly be a contender for a croup episode, so Dan will keep an extra close eye on his symptoms throughout the day.
One unrelated thing Dr. K was concerned about is Elijah's sacral dimple combined with the fact that he protests standing. Other doctors haven't shown great concern about this, but it really wouldn't hurt for him to get an MRI to rule out spinal problems. Getting that lined up will now be in the works.
That's all for now! My lunch break is up and I must get back to work. Thanks for checking in.