Tuesday, April 13, 2010

Do we have answers yet?

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!!!! 


Melinda :o)

Friday, April 9, 2010

What in the world is going on with little man?

I know I haven't updated the blog in a LONG time...actually the last time was when he had surgery back in December...he is fully healed from that now...thankfully.  But we found out recently that we put him through it for no reason because it did not help his sleep apnea at all.  Grrrrr!!!!!

Alright well where to begin.  Micah had a sleep study a few weeks ago.  Turns out he is doing worse off than before.  He is struggling still with all sorts of sleep apnea and hypoventalation (under breathing) which in turn causes his Co2 to build up in his system...not a good thing.  :o(  This can cause his heart to have issues so we have to get him to use a bipap machine while sleeping...not an easy task with an almost 17 month old.  He will wear the headgear and mask around as long as it isn't plugged into the machine...the machine scares the poop out of him, understandably, so we are in a process of trying to get him used to it while awake for small amounts of time so we can "hopefully" get him to use it all night every night...
Alright well the sleep doctor said (after me asking about it) he should get an ECHO of his heart done...so we did.  After a week of waiting for the results because our dr was on vacation a resident finally called us at 5pm on Good Friday and gave us the news we didn't want to hear.  Micahs heart is being affected negatively by his hypoventalation/sleep apnea/co2 issues...he has now developed Pulmonary Hypertension, but from what he told us it wasn't that bad. 
Today we saw Dr.P the pulmonolgoist.  Well he looked at Micahs ECHO and said that the right side of Micahs heart is enlarged and his pressures (blood pressure) in his heart are ALOT higher than they should be.  He is confused to as why all of this is going on but feels that Micah has lung disease or CCHS (congenital central hypoventalation syndrome) and all of this is playing a part in the issues with his heart now.  So...he said Micah needs a CT of his lungs done, needs to see a cardiologist, and we need to think about doing a cardiac cath to check the pressures of his heart, and if the bipap machine doesn't work soon then we have to truly consider doing a tracheotomy for Micah and putting him on a ventilator while sleeping.  WHAT????  So we've been told this many times recently and it's starting to get to us...we have a very "normal" 17 month old that has complex medical conditions that even dr's at Mayo are confused about...really it kinda blows. And all of this needs to be done fairly quickly since he is already having heart issues.

So right now we are still confused about ALOT of things but hope to get more answers next week.  Micah has his Lung CT on Monday morning, he sees Cardiology on Monday afternoon, and then we go back and see Dr. P (pulmonology) on Tuesday morning.  Hopefully next week we will find out what the next step is to help Micah!!!!!!!!!!!!!!

Hope this isn't all too confusing as it's confusing to me and I was the one who went to the dr appointment with Micah today and don't fully understand everything.

God is good and He is watching over our little man this much I do know! 

Prayers for health are greatly appreciated! 

Will update more when I find more out!