RSV 2011

Having a Jonah as your child is exhausting! The roller coaster ride is only fun when we are going down the slope with your arms in the air. My coping mechanism has always been to move on and believe that he is all better now. It gets me every time. Silly, I know. I should be way over the denial stage by now but after every hit he takes, I think that it is the last one and really honestly I believe it...until he gets sick again. Then I wonder how this is all happening...well duh! He has lung disease!

Jonah has been doing so good. He has been a crazy man doing crazy Jonah things... (his new thing getting inside the fridge and trying to close the door on him self so he can see the light go off and opening the refrigerator at our house and any one elses house. He is a curious boy, and wants to know what you are eating, if he likes what he sees he will help himself.)
Right now he is coughing. He takes a good breath in between and continues to cough. This goes on for as long as 20 minutes at a time. Then it stops, only to start back up again. I can see that he is getting weaker. Yesterday before the cough, I took him into see his ped, I wasn't sure what exactly was wrong but I knew something was going on because I know him and he was acting odd. I just wasn't' expecting for the dr to tell me that he tested positive for RSV.

I HATE RSV! (I might make this a bumper sticker) RSV is why Jonah has compromised lungs...Okay it's not why, but it's how it started. Jonah had RSV last year as well but he was protected by the Synagis shots that I fought so hard for him to have and because he had that in his system it helped him fight it off as it was a much weaker strain. I can tell by the way he is breathing and coughing this is going to be a long fight for him. I hope that he will be able to conquer it here at home. We started a huge dose of steroids yesterday and he will continue on them for the next week and a half. I am holding so much hope in that the prednisone, extra neb treatments and the CPT 4 times a day will do the trick. I am having no such luck deep suctioning him as he turns his head, holds his breath (turning grey) and fights me with kicks, pinches, bites and his favorite scratches me. I can only use the deep suction machine if Isaac is home so he can hold J's hands down. No matter how he see's it we are MEAN! Breaks my heart.

I believe we are in day number 2 as he was fine up till Thursday, just before midnight. I talked to my friend who said RSV peaks around day 5-7 that gives me the cramping feeling in my stomach. though he has only gone up a half liter so far. I'm asking for prayers and positive thoughts sent his way. I know I ask alot, but only because I know you love him! How could you not?