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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

Monday, May 17, 2010

what will the lucky number be....

I don't really have a lot of wisdom or insight or really anything deep to share with you.  We are pretty much just drained and tired of all of this, but I wanted to update you.

Ridge came into the hospital two weeks ago this Wednesday-- May 5th.  He was low on hgb, running about 7.7, so we got two transfusions, things looked good, we went home Thursday night, May 6th.  Friday, May 7th, he was kind of on "observation" bc we just weren't sure things were okay.  He had a great day but my insides just weren't settled about it yet, so I wasn't really surprised when later that night, he had a dark stool, we checked his hgb, and it had dropped about a gram and a half.  So we brought him in, and by the time the ER finally did his CBC, his hgb was 8.0.  Which meant he'd dropped 3 grams in about 12 hours.  It was another 3 hours before he got his blood-- I think delays like that are ridiculous.  He was obviously lower-- he was getting very pale, gaggy, and having super low desaturations on his oxygen levels.  He needed the blood when we got there, way before 2:30 AM.  So Friday night, May 7th, began a loooong road, that we are still walking.  Ridge got three transfusions from 2:30 AM Saturday through that day.  He got 3 more on Sunday.  Those were all 10ccs/kilo, or 80 ccs of blood.  Which meant in two days, he got approx. two to three adult sized transfusions, if my research is correct.  On Monday, he got one 80 cc transfusion, one 120 cc transfusion, and one 160 cc transfusion, which meant in that day alone he got almost 2 adult sized transfusions.  Until MOnday, his diapers had been mostly black.  Monday, his diapers became more maroon. Tuesday, he got 2 160 cc transfusions, Wednesday I think he only got one 160 cc transfusion, Thursday maybe he got 2, Friday it all broke loose and he had 8 or 9 red diapers-  he was pooping every single time he was awake. You haven't smelled stinky until you have smelled straight blood in a diaper.  I won't complain about poop smell ever again, or I will sure try not to-- because this stench is enough to gag you multiple times over and permeate the entire room.  It isn't pleasant to look at, and cleaning your child's dirty bottom is never fun, but it is so difficult to do so without crumbling when all you are cleaning is blood after blood after blood....and none of it is even his blood.  He has cycled through all of the blood we've given him, more than once.   I don't remember how many transfusions he had since last Thursday, but I believe the total from May 5th to today is 23.  23!  We are talking about probably over 2500 ccs of blood.  I am so weary of this.  Last Tuesday, we also tried taking him off food/feeding and upping his octreotide.  This is a standard treatment for GI bleeds, I think not only in MLT kids, but in older people too.  Octreotide limits blood flow to the gut, so to cut off the blood flow to the gut and then feed it, which increases blood flow to the gut, you can do some damage/"kill" the gut/intestines, and if those organs die, there's really nothing you can do to fix it. So anyway, Ridge didn't eat from Tuesday to Sunday.  We didn't see huge differences in doing that, which was disappointing, not only bc he couldn't eat, but bc it was supposed to work.  It usually works to stop bleeds.  So we had to decide what to do.  Because things were so bad-- worse than ever before, other than the fact he wasn't vomitting, we decided to put him back on steroids.  This is supposed to be a short term, 1 week mega dose.  We are hoping and praying that it stops the bleed and that we are then able to back off of it.  Please pray that with us.  I do not want my son on steroids long term. I hate them.  I don't want to make a decision today that will preserve his life now, but make it less normal later.  But that is what we are having to decide, it seems.  And any parent would do whatever it takes to save their child's life. So that's what we will do...but it is so hard to accept.  Steroids have awful side effects-- not only the horrible swelling that we saw in Ridge when he was last on steroids, but they also cause his bones to be less dense, allowing for more fractures, and the possibility of less mobility.  They can cause glaucoma.  They can cause heart issues.  They give him crazy high blood pressures.  They severely lessen his immune system.  We've learned this time around that we can no longer give him vaccines- even deactivated ones, bc that is what started this bleed.  Which means, anyone, family or friend, who is not vaccinated against things like flu/swine flu/childhood illnesses, will not be allowed to be around Ridge, bc he will not have protection against those things-- and that's regardless of if he's on steroids or not-- we can't risk getting him immunized bc I don't want to ever watch him bleed like this ever again.

So pray. Pray the bleeding would stop. Pray this pulse dose of steroids would be effective and we wouldn't be stuck on them.  Pray we wouldn't have to look at another drug to introduce to his body because I can't do it- the drug options that remain are not really possibilities in my opinion. I don't want them in my son's body.  I don't want to have to have surgery to remove a part of his stomach, intestines, colon, or wherever this bleed is coming from.  I don't want to make a decision today/in this time that seems correct, but fixes nothing, and in the end, I have to look at my son at age 10 or 16 or whatever and apologize for whatever side effects he has because I made the wrong decision when he was one and had a disease that he doesn't even suffer from anymore at that later age.  Just pray that this would end.  That God would heal him.  That the bleeding would stop. That we'd have wisdom.

I just don't even want to type about it anymore.  It is so frightening, frustrating, discouraging, disgusting, ugly, miserable, ridiculous, and for whatever is ours.  So here we go, down another fork in this road.   Please pray for us.  Pray for Ridge.  Pray that God would show his power to save, his power to heal, and that he would rescue our baby today, in this very moment.


Amy W <> said...

You picked the exact right song for this moment. " I believe You're my Healer" "Nothing is impossible with You." Praying hard.

Honey Snider said...

I am so sad to hear the latest about Ridge. I am Tricia McCoy's mom and I have been reading your blog for a really long time and praying for Ridge and your family. I have never left a comment before, but please know I will continue to pray, and pray hard! Sue Snider

The McCoys said...

We are continuing to praying as we have been, praying for wisdom but mostly that the bleed will just stop so that the decision doesn't have to be made. Stay strong.

Erin said...

A Mother's Prayer:

The Lord is near to all who call upon Him, To all who call upon Him in truth. He will fulfill the desire of those who fear Him; He also will hear their cry an save them. Psalm 145:18-19

I read this tonight before I even read your post. My heart breaks when I even try to think about what you all are going through!

I will pray the for the specific things you have asked to be prayed for, but I am confident that the Lord will get you all though this dark time just like He did before!

belinda bedell said...

I don't know if anyone can truly understand what you are going through. John faced death multiple times. It was so hard to see him comatose, or having seizures, or out of his mind. People would ask us how we could have peace. We still had pain but we also had peace. John is in God's hands just as all our children are. God could take any of us at any time, in that view, the medical conditions don't make much difference. Sometimes we wonder when the tough times will be over, I know we had another really bad time last semester and John had to have another brain surgery. We are hopeful that he is healed but have faith that he is in God's hands. On the upbeat side, even with all the problems, our son (and maybe yours one day) is a walking living testament at Harvard (no less) to the power of our savior. We pray that you will get over that hill soon and be able to enjoy your precious baby.

Alysea Johnson said...

I listened to a sermon tonight and the preacher said, "You can't have a mighty victory unless you have had a mighty battle". This is your mighty battle and a mighty victory is waiting for you! The Bible tells us that we will have trials and it is an opportinity to grow deeper and stronger in the Lord. Watching you battle this may be the only time some people are able to see Christ. They can see Christ in you and know you are different and seek God because of it. I can't imagine what you are going through. I am praying for a miraculous recovery for Ridge and peace for you and your family.

Jesus loves Ridge this I know,for the Bible tells me so. Little ones to him belong they are weak but he is strong!

(I am Belinda Bedell's daughter)

Sandra said...

So sorry you are going thru this again! I too, have never left a comment before but have been praying for Ridge and your family for some time. I'll ge praying for peace, comfort, wisdom and healing! (I go to church with Denise in Pampa)

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