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!

Blessings

Melinda

6 comments:

Jamie said...

you and the little man are in our prayers!!!!

Kimi said...

ditto Melinda... always praying for you guys... I know someone on a machine and they got a super long tubing for it to turn it on in another room so that it wasn't so loud?!? Maybe that might be an option for you guys. ?? I don't know. Love you guys.

Mrs. R said...

Melinda, you are one heck of a mommy. I am not sure I would've had the grace and patience that you have had through this whole ordeal. You've got two lovely little boys who are blessed with great parents. I hope you feel like you are getting good medical care. Love and prayers, Kristin

mlorfeld said...

He's definitely in my prayers. I will also add him to Messiah's prayer list.

Steckel said...

We're keeping you all in prayer and will add you to Faith's Prayer List and Prayer Circle.

Autum said...

Your family is being prayed for from around the world! May God continue to grant you the peace and patience that you need to deal with this ultra confusing situation. And while it is often hard to trust when we feel so helpless, it is great to know that you are keeping the faith and trusting in HIM completely.