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wife. mom. adjunct professor. we homeschool. i'm a little bit OCD. i love math. bright colors and geometric designs make me drool. we live with a medical rarity, and Jesus saved his life. through that, Jesus is changing us. The american dream and status quo is overrated...and sometimes just plain wrong. our lives, our family, our careers, our faith are all now filtered through a new lens-- thank you Jesus. welcome to our crazy. feel free to take some of it with you, we have plenty to go around.
It's not the load that breaks you down; it's the way you carry it.
-- Lena Horne

The thief comes only to steal and kill and destroy; I have come that they may have life, and have it to the full.-- Jesus Christ

Tuesday, February 16, 2010

more about MLT, and Ridge

MLT info, more...and a day in our life, again.

Okay a few things about MLT I forgot:

in case you don’t keep up with the blog regularly...MLT is rare.  That’s why IF you’ve tried to research it, unless you knew the LONG name for it, you probably found nada.  I’m not talkin rare disease like 1in 200,000 people have it...i’m talking RAAAAARE, as in, I think there are like 30-35 diagnosed cases in the entire WORLD.  ridiculously rare.  it is NOT a result of anything I did or didn’t do in pregnancy, not that you were thinking that, but that question has been asked several times.  It is not hereditary- so if (when) we have another baby, the odds of he/she also having MLT are  Of course, the odds of Ridge having it were almost zero also...but you really think we’ll have TWO kids with it?  doubt it. 

the main danger in MLT is the severe GI bleeds.  They could obviously lead to death.  These bleeds are MORE dangerous in infancy, bc an infant has a smaller body and less blood to lose, so when they DO lose it, the effects of that blood loss are seen rapidly.  Ridge would get an incredibly high heart rate and be crying this super weird cry bc he couldn’t get enough air...he’d be getting “shocky”...he’d rush a pale color...once he couldn’t stay awake and I heard the nurse tell a doctor that he was coding.  I don’t want to think about that.  That hasn’t happened in a loooong time.  well, four or five months.  that’s a long time considering he’s only ten months old.

Ridge has responded to steroid treatment, and most of the time that is not effective in MLT cases.  However, this has come at a price.  steroids stunt growth, so does the octreotide he is on....steroids cause him to retain fluids which is why his cheeks are so ...deliciously fat.  steroids also, the longer used, weaken the immune system.  this is dangerous because Ridge can’t take a prophylactic (preventative) antibiotic, at least not orally, bc it makes him begin bleeding.  so his immune system is “functionally” low.  which means we avoid getting out if possible.  which means few visitors, and when people do visit, obviously we prefer hands to be sanitized or washed.  because our bodies produce steroids of their own, as we wean ridge’s steroids, we must do so slowly so that his body can “make up” the “difference.”  if we are giving him 1.4 MLs of steroids and we cut that to 1.2, we have to give his body time to make up that .2 MLs before we reduce more.  The longer he is on the steroids, the more likely a severe reaction to the reduction is to occur.  Severe reaction would be marked by vomitting and/or fever.  ANY time Ridge has a fever, regardless of the steroids, we don’t give him meds and watch him.  we take him immediately to the hospital bc it could be a central line infection (the line in his chest).  Thankfully, this has not happened yet (no fever, ever).  If he did have a fever, by the way, he could only take tylenol.  If you are a parent, you know Motrin, or alternating Tylenol and motrin, works best.  motrin is ibuprofen.  This can cause the stomach lining to bleed.  We have enough bleeding issues.  So we can’t give motrin.  Because he still breastfeeds, I can not take motrin for headaches or any other aches.  Not that that is a huge deal, I have a friend who is having to learn to avoid MANY food items for her daughter’s sake while she breastfeeds, so I am most definitely not complaining.  I am simply explaining things you may not be aware of.  Anyway, fevers or vomitting can be trademark signs of the steroid wean not going well.  At that point, we’d up his steroid, and then we would have to take him to the hospital to make sure it wasn’t a line infection.  For this reason, ANYONE who has a fever or has been exposed to a fever, OR vomitting, can not be around Ridge.  It is just too risky.  A hospitalization is just not what we want.  Any other illness, even a cold, he would be more likely to catch than a regular child bc of his definitely weakened immune system.  So going to the grocery store isn’t as easy as it used to be- we can’t really go as a family....bc we can’t take Ridge.  We went to church our first weekend home, and it was so wonderful.  But we can’t take Ridge and feel comfortable about it anymore, not until the steroid wean is more successful.  I am hoping and praying the wean has reached a successful place by the time we celebrate Ridge’s birthday.  Because i want friends and family to be able to be here and Ridge to be able to safely celebrate! 

Our day goes a little like this:

Brandon and Sawyer leave for work/school by 7:30ish.
Ridge and I sleep until about 8:30 or 9 AM (we aren’t lazy, keep reading)
Ridge gets his diaper changed and his blood checked (video or something of this soon-- the blood part, not the diaper part).
Ridge takes his meds around 9:15
I email the clinic to tell them what his hemoglobin was for the day
I give Ridge another med around 9:45 or 10
He has to wait until about 10:30 to eat anything bc of the meds. 
He usually plays or is held and then naps around 11 or 12 for about an hour.
*Ridge is crawling and pulling up now.  Dangerous bc he has 3 feet of cord and that’s it.  So I gotta watch him closely and follow him moreso than with Sawyer or a “normal” baby...bc if he pulls the cord, he pulls the line in his chest, which could be mucho-bad-o.*
At 3 pm he takes one other med.
at 4 pm I change his octreotide (IV med- video of that someday soon, too).
He usually naps again sometime between 2 PM and 5 PM, for about an hour or so.
Once a week, he gets his dressing changed on his central line and he gets a lab drawn at that time also.
He plays or naps or eats sometime between 5 and 9 pm, which is when he gets meds again (about the same amt as 9 AM meds)
He gets the same med around 930 or 945 PM that he got at that time AM.
He stands and splashes my bath water as I take a bath most nights.  Ridge only gets sponge baths bc of his central line; he can’t be “submerged” in water.  Like a toaster.  Yeah, like that.
He eats around 10:30 and sometimes falls asleep.  Sometimes he squeals with delight and pinches his daddy’s face until close to midnight. 
Sometimes he makes daddy sleep in the recliner with him all night.
Other nights he wants to nurse the entire night while he’s sleeping. 
Which means I’m not sleeping.
That’s why I sleep until 8:30 or 9AM.
Then we start all over.

I hope that explained even more than I have previously! And I hope it wasn’t boring!

1 comment:

Stacy said...

Good post. I enjoyed reading about your day. :)