down but not out

this post may be a downer. sorry for that. but the reality is that i'm feeling pretty down...

this morning i took gavin to gilbert to see his pulmonologist. he is the one that did the bronchoscopy portion of gavin's procedure last monday. i fully expected to walk in there and just discuss the future plans for getting him off steroids. i was a bit surprised with the amount of information i was given when i got there.

first, he told me that gavin is not aspirating anymore! praise JESUS. what an answer to prayer!! that was about the only good news i got though.

from there, he said that the results show that there is still significant inflammation in his lungs. no real surprise there....we kind of figured that. however, the inflammation is causing the blood vessels in his lungs to also be inflamed and because of that, it is causing minor bleeding in his lungs. i don't really know how to wrap my brain around that. there really isn't anything to be done at this point in regards to the bleeding, with the exception of continuing steroids to decrease inflammation. it is such a catch 22 because although the steroids decrease inflammation, they also compromise his immune system. that's not good. and that led the doctor to his next point...

gavin has an infection in his lungs. it is the same strain as a sinus infection/bronchitis type of an infection. gavin was given a 10-day antibiotic to treat that. i'm pretty good at knowing when this little boy is sick, but i had no idea. with the exception of a little cough, he was fine. no temp, no stuffy nose, no increased work of breathing, nothing. i figured that because of this crazy weather and the countless "haboobs" (sorry, i couldn't resist), everybody in phoenix has a scratchy throat/cough of some sort. i guess i was wrong.

i want gavin off steroids so badly. it is such a tough thing to balance. i know he needs them to help with the inflammation, but he has been on them since he was 12 days old and they also have significant side effects, some of which can be long term. those are the ones that scare me the most.

if you thought that would be all of the news i would receive, you would be mistaken. gavin's pulmonologist then referred us to a pediatric cardiologist. gavin has never seen a cardiologist. i was hoping a cardiologist would be the one specialist we wouldn't have to see. so much for that. due to the severity of gavin's lung disease and how hard he has to work to breathe, it could be causing a strain on his heart. i am not about to stress out too much about this appointment until i am given a reason to do so. no need for the extra anxiety right now. however, let's all pray that everything is just fine with his heart.

then came the real kick to the stomach. his doctor told me that he expects gavin to be on oxygen through the winter. umm, that is 5 months away!! gavin is off oxygen during the day so i guess i figured that he was closer to coming off oxygen than his doctor seems to think. he said he may come off for a bit this fall but will most likely need it whenever he gets sick during the winter months or just in general. i'm in the market for a second opinion on that one.

so, needless to say, the appointment didn't go quite as i planned. it seems like that has been the theme though....i think God is trying to teach me a little bit about my expectations and His plan for gavin. i sure wish i was more teachable.

my sister once told me about a book called, "just enough light for the step i'm on". i feel like that. i feel like God gives me just enough for each day and not an ounce more. have you ever felt like that? don't get me wrong, i am thankful for those hopeful moments, even if they are brief. i just wish that we had a little more breathing room and time to catch our breaths before the next hit. it doesn't look like they'll stop coming anytime soon.

again, sorry to be a downer, but i'm down. here's to tomorrow...