Sunday, June 21, 2009

Sleep Study Results and where we go from here.

Micah's pulminologist Dr. S called this evening to let us know the results of Micah's sleep study that he had done on Tuesday. Good news. Micah has improved. :o) A few months ago Micah had a nap study done these results came back showing that Micah spent 34% of his sleeping time with a oxygen saturation below 90% (he should be above 95%), this last sleep study came back with results of him only being below 90% for 4% of the time!!!!!! That's a 30% difference! Yeah!

Dr. S said that Micah is improving yet he still doesn't know why Micah desats. There are two things that happen while Micah sleeps central apnea where he actually stops breathing (this is controlled by the brain) and the second is obstructive apnea where something obstructs his airway while sleeping and causes his o2 to drop.

Where we are going from here? Well let me tell you, we are moving in 4 1/2 weeks and the next 4 1/2 weeks are going to be very busy it appears. I am wanting to get as much done here as possible for a couple of trust Dr. S and his judgement. two...we have childcare for Noah here usually and I know no one up in Rochester who could watch Noah while I take Micah to test. three...I don't want to wait for answers...i am not being patient and I want them NOW!

So...Dr. S feels it is important for Micah to get an MRI of his brain. Micah has a few different issues going on with him aside from his breathing, he has poor swallow which causes him to aspirate, he has silent reflux with aspiration, and he has had neuroblastoma. All of these issues along with the central apnea are controlled by a certain part of the brain and the autonomic nervous system, an MRI will show in detail different areas of the brain to see if something is going on/wrong. This will hopefully be set up for in about a week or so. Dr. S also would like an airway evaluation for Micah as well. We see Dr. S on Tuesday and will find out where else he would like to go from here.

Please please pray that all goes well in these next 4 1/2 weeks. We have a lot to do on top of packing and moving. Pray for the strength to do it all. Please pray that Micah continues to get better!

Otherwise we are all doing pretty well. It's so hot here already, we are looking forward to cooler MN days and nights!



Friday, June 12, 2009

Praise and Thanks yet confusion and frustration

Micah had his bone scan yesterday and it came out wonderfully!!!! The nurse got the IV in on the second try!! Praise the Lord! And the results came back showing no cancer in his bones!!! Praise the Lord!!!!! God is good! So for now we are in the clear until we have another CT scan in August.

We have been awaiting the results of Micah's gene testing for CCHS. Well we received these results this morning. Dr S called and let us know that 90% of people with CCHS have a gene mutation and Micah does not have this gene mutation...prayer of thanks!!!! The confusing part is that we still have no idea what Micah has. Dr S says he still thinks that Micah has some for of a disease like CCHS but he doesn't know what. Micah is still requiring supplemental o2 while sleeping. He has a sleep study on Tuesday night so hopefully this will bring answers. I pray for answers! I think the hardest part about all of this is not knowing! If I knew what was going on with Micah I could deal with it, learn to live with it, but right now we are in limbo going to test after test. So for now our trip to Chicago will not be happening (which is fine by me).

I hope to have more answers after his sleep study on Tuesday night.

Until then...please continue to pray for Micah and for his recovery...i wish this journey of tests and confusion was ending but it doesn't look like it will anytime soon.

I am exhausted. Worn out...confused and sad. I have this child who appears perfectly healthy on the outside, who meets all of the developmental milestones, who is growing amazingly well, yet is still sick and in need of extra o2. I am ready to know what is going on, ready to deal with whatever is thrown my way, ready to live a more carefree life with my children...but until then I guess i'll just be exhausted...just still moving forward...cause that's what a mom does!



Friday, June 5, 2009

Bone scans and sleep studies

Starting next week we will be having more scans and test done on Micah. Oh the fun begins again. On Thursday the 11th Micah we have a bone scan done to make sure that he is cancer his last bone scan if you remember the radiologist saw "something" on Micah's ribs...the oncologist said most likely it was just "stress" on the ribs from surgery but...we will be rescanning him on Thursday to make sure! Please pray that the scan comes back perfect and that no tumors pop up on the scan....but also pray that if there is a tumor or any cancer in his little body that it does show up on the scan...does this make sense? I guess I am just asking for prayers that he is cancer free but if he's not that it shows up. Oh please also pray that the nurses get the IV in on the first try...he is a HORRIBLE stick!!!!

The following Tuesday (the 16th) Micah will go in and have a full sleep study done. Seth will be taking him to this so I can actually get a full nights sleep!! I am sooooo excited, yet sad that I won't be there with my little one...i've been with him for EVERY test he's had done so far (and he's had ALOT). The sleep study is going to be done so that the Pulminologist can see how Micah's o2 levels go up and down all night long with out o2...i'm hoping they can get the results they need for this test! They will also be checking his co2 levels and so many other things that i have no idea. This test is painless...thank goodness...but he doesn't enjoy having all the leads stuck all over his head and body...i don't think i blame him! He ends up looking like a head trauma patient because they have to wrap his head with gauze to keep him from pulling the leads off...kinda funny and very cute!

We are still waiting for the Child Development Center to call us to tell us when we will be doing the swallow study and am waiting to hear back about the Phox2B gene test for CCHS. I am hoping by the end of the month we know the answer to this and if we will be heading to Chicago to meet with the dr's at Rush or not.

Oh and to top all of this off...we are moving in a little over a month and a 1/2. I think we our move in date is set for July 23rd in Rochester MN...and I haven't even began packing, although Seth and I did tackle part of the basement one night this week and threw out a bunch of stuff and packed up some stuff to give to the resell it shop here at the Seminary!! It's amazing the amount of junk we accumulate!

We are off to Iowa for the weekend. My younger sister is having a baby shower. She is due with a little boy (Isiah Thomas) at the end of the month!
The Flicks!!!

Wednesday, June 3, 2009

No updates just pictures

I don't have any new updates...just some pictures for you to enjoy until we get some updates on where we stand with everything with Micah...ENJOY!