I posted yesterday before I had seen Avery and let's just say he did not look so good.  He was really needing a transfusion.  He had a good night after his transfusion and labs were done this am.  Typically 12 hrs. after getting blood his H/H are usual way up (norm for him 12/35).  This mornings labs had him at 10.6/31, now that is not bad but not where I would expect him to be.  His platelets are still dropping although his white count is up to 3 which is better.  It seems that he may have pseudomonas which a bacterial bug that he is colonized with.  This is the only thing that is showing up.   But with all his numbers being so low it would be indicative of a viral infection.  So he could still have a viral infection on top if the pseudomonas. They switched his antibiotic on Sat. to one that is sensitive to the pseudomonas so he is not having fevers anymore but I am still concerned as to why his blood levels are lower. 

When I came in today I was expecting him to be all pinked up but instead I saw a gray/yellowish smiley kid.  Have know idea why his color is weird but he does seem better than yesterday.  I guess it will take some time for him to go back to baseline.  I just hope he doesn't go downward again and require another transfusion. 

I have to say this back and forth to the hospital and taking care of the other kids and working is certainly taking it's toll on me.  Thankfully Rick is back tomorrow evening and am sure he will be the one discharging Avery on wed. (how nice).  I cannot imagine being a single mom with my kids and keeping up work and all.  I would truely be in committed to the nuthouse.  On my car rides I have also been thinking about how a single infection or illness could take our little man away from us.  Not this one specifically but just how this nasty disease takes the lives of so many of our children at the blink of an eye.  With seeing the recent video "faces of mito" it really gets you thinking and worrying when you kiddo goes in the hospital.  I honestly cannot imagine my life without this little guy or Isaiah. 

But for now, we go home soon and enjoy our lives......

Here is a before and after of Avery's transfusion.  Blood sure does a body good.

Thanks for the notes guys, it is good to know I have readers :)

I felt good about leaving Avery last night b/c I knew he was in good hands.  His favorite nurse is on the overnights.  YAY!!! I sort of think Avery planned it that way.  She knows him just a good as a home nurses so I felt real comfortable going to sleep last night. 

He had a good night but still had a fever.  His blood counts have continued to drop and he will get transfused today.  So far his blood and yeast cultures are negative, PHEWWWW.  That is a HUGE relief.  As you know Avery has just about no more line access and if he were to get a yeast in his line it would have to be pulled.  And the rest is just not good.  So I am so so grateful to not be dealing with that right now.

So instead this boy has some type of virus that is eating the heck out of his red and white blood cells.  Yet he looks totally fine.  I mean if you looked at his labs alone you would think he is really sick, then you look at him and he is just smiling away.  He just never follows the norm.  Silly boy.  Hopefully this virus "whatever it is" will kindly leave his system and this transfusion will be the only one he needs this admission.  Although I am sure getting blood.  THANK YOU DONORS, will be just what he needs.

I think he will be home by the time Rick comes home, as if nothing ever happened will daddy was gone. 

Here we sit in the ER waiting on a bed to be admitted :(

Avery has continued to spike fevers despite the IV antibiotics.  Which could mean one or two things, either he has a viral infections that the antibiotics don't cover or he has a yeast infection which we are not covering.  I would take the viral infection of course.  He doesn't seem miserable but these temps. won't go away so we will see. 

Of course the timing sucks b/c Rick is out of town til Tues.  So I will be getting Avery settled into a room tonight then heading home to be with the other kids.  I will not have Rick change his plans in any way.  I am sure Avery is fine and will be home soon. 

Isaiah is at home in a retching cycle.  Nothing unsual these days.  While Janessa wants to be entertained b/c it's school vacation.  I definetly need to clone myself a few times :)

Will keep you all posted.

Also, at times I feel like am I writing but nobody is reading.  The only way I know people are reading are by adding some comments.  So if you get a chance i really like to here from you all every once in awhile :)  Thanks

Get your Tissues ready

A mito mom made another beautiful video and added a bunch a other kids.  The boys are in it towards the end.  Please help to spread the awareness of this disease. 
http://www.onetruemedia.com/shared?p=abcd7ad4ed02f7e4e33826&skin_id=701

We almost broke our 3 month hospital break yesterday.  Avery woke up happy in the am but soon after his nebs. treatments he turned really pale, lethargic and feverish.  He was struggling to keep up his sats and his fever was at the blood culture mark.  I had packed us up to head to the hospital and even got as far as heading to Children's but momma had to make a Starbucks run :)  As I am driving to Starbucks, little man is in the backseat laughing and looking great.  Hmmmm

I know how it goes in the ER with him.  Once you walk through the doors it is an automatic 48 hrs. stay to rule out a line infection.  Well luckily since switching to a new homecare company, I had all the supplies to draw our own blood cultures and basic labs.  I got the OK from the hospital and was able to draw all his labs and drop them by the local hospital.  Of course the lab that the hospital looked at me like I had 10 heads.  I can imagine they see this mom who practically looks like a kid with blood cultures bottles and a purple top tube and requesting that these get sent off.  It took them a few to learn that I was not some wacky lady and they sent them off.  Well his first set of labs showed his WBC (white count which indicates infection) had changed quite a bit from labs drawn on friday.  So this was suspicious of some kind of infection.

The hospital ordered home IV antibiotics to start treatment until his cultures come back.  He has already had two doses and looks like a different kid today.  So far fever free.  This sure beats being inpatient I tell ya.  Rick is going out of town for 4 days  and it would be really difficult for me to manage it all while he was gone and Avery being inpatient.  Hopefully his cultures come back negative and we can get off the antibiotics soon.  I am just real pleased to have been able to do everything at home.  I am sure my insurance company is pleased too....

No news is good news!!!

In our case...

We are thoroughly enjoying this beautifull spring weather.  Isaiah's retching cycles have seemed to slow down to once a week.  Wooohooo.  Although the week is not over yet he has gone to school for the full week.  This is the first time in many many wks.  So that is certainly a sign of things looking up for him.  I am hoping it stays that way for awhile.

Avery has done amazing.   We are nearing 3 whole months hospital free.  This is a record setter for sure.  Since starting his IVIG infusions last summer, he has only gotten 2 infections.  He is at the point that both the nurses and myself can manage him so much better than we used to.  He certainly has his bad days still and with allergy season here he is having respiratory issues but nothing worth panicking over.  It is amazing how much more manageable our life is when we are not living it in the hospital.  I am hoping Avery will break some more records here.  My baby boy will be FOUR years old in a few short weeks.  Where has the time gone :(  I honestly think that the older he has gotten, the better he is.  Now I am not living in the dark and know how horrible and progressive this disease is.  However, I am a firm believer that less is more (meaning interventions) an in our case it has helped tremendously.  Avery is considered a severe case of mito and yet he is doing great in terms of infections, autonomic issues and multiple systems.  Other than the being TPN dependent he is doing awesome.

Janessa is starting softball and is pretty excited.  And of course anxiously awaiting her dog.

Talk about how fast time passes, it's me and Rick's 12 yr. anniversary on Sunday.  :)  I love you babe, you are such a great guy, husband, daddy and many other things. 

Happy Spring!!!!

It's been a great week all around.  Boys have been feeling great.  Life is good in general.   No complaints round these parts.  I hope everyone has a great Easter. 

Here are some pictures of the kids enjoying our outside swing and the beautiful weather.