No...we have zero answers right now...and it doesn't look like we are going to have any, any time soon. Bummer right?!?!
Here's what we have found out in the last 2 days...
Had a lung CT done yesterday. It went alright. They tried to get an IV in Micah to do it with contrast but had no luck with the IV. I gave them 3 tries to get it in...they only tried once! (we've had many problems with getting IV's in poor Micah...we've also had horrible luck with people trying to get them in and sticking him over and over which is no fun which is why I have a 3 tries and your done limit now!) They looked to see if they could find a vein to work with but had no such luck...so the CT happened without contrast which was fine.
Next up was Cardiology. The cardiologist looked at Micahs Echo and said "yep he has pulmonary hypertension and yep it is most likely caused by his sleep apnea/hypoventalation issues". Which in my head I was saying "duh we already knew this!!!" but I kept that to myself. Anyway, he says that we have to treat the sleep issues instead of treating his heart...um...okay...So what does he want us to do? Well he wants us to make the bipap work. Alright so we are back to square one...alright so maybe no square one but back to the place we were in on Friday. Anyway, he doesn't want to treat it with medicine because he feels that too many dr's are over using the medications on little kids and there is no true evidence that it really helps and anyway the reason why he's having PH is because of the other issues so again...treat the other issues. He doesn't want to put Micah through a cardiac catherization right now so that is off the table.
We went back to see Dr P in pulmonology this morning and here is what he said. Micah's CT doesn't look horrible...there are a couple of things to notice but not huge. He wants us to go back and see G I because in the CT Micah's esophagus is really big and this isn't normal...this could be what causes him to have swallowing issues. He said that if G I ends up wanting to sedate him and scope him that we need to call him (Dr P) because he'll then try to get Cardiology to go ahead and do a Cardiac Catherization since he's already out...haha...kinda funny I think. Also...he says that while Cardiology told us to get an ECHO done very 6 months to keep an eye on Micahs heart he wants us to get it done every 2 months at the very least. So the next ECHO is schedule for June. (can you believe that in 2 months it will be June already?!?!?! crazy!) Then we will have a follow up with Dr P again...we have until then to get him on the bipap and get it working...if it's not working then we will have to seriously consider other options...ie trache...We really want the bipap to work!!!!!!! So...I think this is all we found out today.
We have a sleep study scheduled for next Thursday, it may get canceled though because the whole point of it was to see how Micah was doing on the bipap and well right now he's not even on it while sleeping yet becaue we are trying to get him to not freak out with it...tonight we got him to wear it for 20 minutes while awake...yes he screamed and hated it the whole time but he didn't try ripping it off the way he had the last couple of times we have tried! Yeah! Progress! I am just waiting to hear back from Micah's sleep dr to see if she wants us to keep the study scheduled for next Thursday or reschedule it...we are praying for her to reschedule it for when we can get good results with the bipap.
Next Friday Micah sees neurology again. I'm not sure what all they are going to tell us but we will see, we are still waiting to hear back on a genetic test they had run...hopefully we will hear the results on this soon!
Alright well I think that is all about Micah for now...through all of this he has held his head high, done a wonderful job, and takes everything in stride...if only mom and dad were as laid back as he was!!!!!!!
Thank you so much for all your prayers, we still need them...especially Micah!!!!