Mar 30, 2012


Manny's gallbladder has been out for almost five weeks now.  The surgery site looks great and he seems to have little to no pain.  Then again, he wasn't acting like he was in pain before the surgery either.

In fact, remember how I told the story of right before and after the surgery?    Even a few minutes before the surgery, he was playing, laughing, just being himself.  The surgeon and I even discussed how well he was doing and how the gallbladder would still need to be taken out, even if it's not all that bad.  Then after the surgery, the surgeon was on the verge of tears as he recounted how "sick" the gallbladder was.  He was struck by how happy and "normal" Manny was acting when he MUST have been feeling horrible and in a lot of intense pain. 

Well, I asked for a copy of the Pathology report.  I now know why the surgeon was so emotional.  The gallbladder was "gangrenous necrotic"  ... Here is the definition: 

Gangrene is a serious and potentially life-threatening condition that arises when a considerable mass of body tissue dies (necrosis).

In other words,  parts of the gallbladder had died.  The report went on to describe just how damaged the gallbladder was and that it was indeed leaking contents. 

The mortality rate of this condition is very high ... well over 50%. 

I feel like we dodged yet another bullet. 

I also can't help but wonder about his level of pain.  Is he in pain all the time but is just so used to it that he doesn't complain?  I mean, he MUST have been in horrible pain and felt very, very sick. 

The other news I have is about the Ethanol lock.  I've mentioned it before but here's a bit more about it.  He has the broviac which is like a "tube" in his body.  This tube delivers medicine, TPN, etc. right into the bloodstream via a vein that dumps right over the heart.  So an infection in that line would be very dangerous (like what happened in December). 

While TPN is running, it's difficult for things to grow in the tube but when it's off, things can grow.  So a medical grade Ethanol solution is supposed to go into the tube.  Think of it like a straw.  They take exact, precise measurements of the length of this tube and then put in that exact amount of Ethanol.  It's not supposed to go into the bloodstream ... it's supposed to just fill the tube. 

Manny is on TPN for 18 hours a day and off for 6 hours.  So during those "off times" three times a week, I am supposed to administer that exact dosage of ethanol to reside or dwell in the tube.  When it's time to hook him back up to the TPN, I am to withdraw the Ethanol and flush the tube with saline thoroughly. 

If ever someone accidentally pushed the Ethanol into the bloodstream instead of withdrawing it, they are to immediately flush flush flush with saline solution and file an incident report. 

It's been a series of events over MONTHS that has included me in the determining of the protocol of this for him.  I'm friends with the person who is in charge of the IV team and we're even going to have an article about Manny and his Ethanol therapy.  So she included me on everything.  How they came up with the amount to be administered, when, how, why, etc.  I was involved in every step.  I've read the articles and clinical trials.  I've been trained on how to do it along with the nurses at the hospital. etc etc. 

Manny was the first kid to have a protocol written IN this hospital.  So the whole thing was a big deal.  They ran it a few times in the hospital before we were discharged.  All went well. 

March 5 was to be the first time I administered it to him at home.  About an hour before the dosage was due, I was going over the protocol to make sure I did it perfectly.  I pulled out the prefilled syringe of Ethanol and was in shock. 

It was the wrong dosage. 

It was 7 times the dosage that it was supposed to be. 

To be precise ... the dosage is 0.3 ml.  (That includes 70% ethanol and 30% saline).  I know that number off the top of my head only because of how many times the IV team and I discussed it.  How they arrived at that number.  I watched them administer it. 

But the syringes given to me said "Ethanol 1.43 ml, Saline for total of 2.0 ml"

What Mom questions the dosage given to their child in a prefilled syringe?  I mean, I've NEVER before been around for the discussions of the dosages of medicines given to my kids.  I'm just told to give the med. 

And I began to wonder what a lethal dosage was.  Afterall, only .3 is supposed to go in since that is the length of the tube.  But in this case, 2ml would have gone in, in other words ... 1.7 would have been into the blood stream and the .3 in the tube.  It would have gone straight to his heart ... and because I wouldn't have known the error, I wouldn't have known to flush flush flush and get it away from the heart. 

And let's say he survived this initial dosage, I am supposed to administer this 3 times a week.  how long before this would have proven too much for his body?  Once?  Twice?  A week?? 

It FREAKS me out that he could have died ... and it would have been

It's by the grace of God alone that this was caught!  


Since the error the error I have had an interesting ride. As soon as I discovered the error I called the pharmacist to let him know. He talked  about everything BUT the overdose. (I was still in shock I think.)  That night the nurse was there to draw labs. She told me the pharmacist had called to talk to her about it and I felt relieved.  I showed her the syringe and she was in shock. Apparently, he didn't mention the overdose.  I knew I'd have to pursue it.  (Sigh)

I HATE that I have to go confrontational.  

What I want?  Manny to be safe.  Plain and simple. 

The nurse and I decided it would be best to handle it "In house."  If SHE had been the one to discover the error as she was about to administer the medicine, she would have had to call the pharmacist, alert him of the error and file an incident report.  I felt that was the best way to handle it. 

Except, the pharmacist started denying the problem.  Started saying things like the script said X and Y.  (Which it didn't ... I kept the syringes with the wrong script.)

So the nurse borrowed one of my syringes (I had three wrong ones) and took it to her nurse manager on March 28. She got the script out of the file (which had the dosage on there clearly) and handed it along with the syringe to the nurse manager and said, "What do you think?"  At which point, the manager gasped ... it's not a small error. 

They called in the pharmacist.  He then started hemming and hawwing saying he had actually TOLD me to do X and Y.  Now he's actually blaming ME for the issue.  That is not OK.

Cool part is ... the people at  the company knew me well enough to believe me.  This is a man who works with them and they believed ME. 

He called me and left a voice mail about how he wanted to "set me straight." I was VERY upset. 

So March 29 I decided to take matters in my own hands and sent a letter.  I'd been keeping all the details in a letter as time went so I didn't miss something.  I sent it to the pharmacist directly.  And I prayed a lot.  I wanted him to have the letter first so he would know what I was thinking and what I was feeling and the details (from my perspective). 

March 30, I called the Pharmacist.  He apologized!  He thanked me for telling him.  He told me how thankful he was that I caught the error.  He already filed the proper paperwork about the incident with corporate so they can make a systems change. What a difference a day makes!

I was kind.  I was forgiving.  Afterall, I wasn't after his  job, I want him to be better at his job. I want him to be 100 times more careful than he ever was before. 

I think the way I handled it was a "witness" to him.  He saw my heart. 

And I think it's finally "Over". 

Mar 28, 2012


Life is ... well, always interesting around our house.  Most days I feel like a juggler trying to keep all the proverbial balls in the air.  Trouble is, I dont' know how to juggle!  And I certainly have more than THREE balls.  :)

The good news is ... Manny has been out of the hospital for a month (We got out Feb 27).  This is the longest stretch out of the hospital since August!  We don't take this reprieve lightly. 

Now there have been a few "hiccups" during this time of course.  It wouldn't be Manny if there weren't a few of those, now would it? 

Many, many issues with tape, adhesives and the cleaning solution to try to keep his broviac infection free.  There was also an "issue" with the ethanol lock ... but that story is still unfolding so stays tuned. (Let's suffice to say it was an overdose that almost was given to him.)  But I'm proud to say I think we finally have a solution for his skin.  At least for now. 

Basically - these days they have found that a solution called CHG is the best, most effective antiseptic for line infections.  Much superior to alcohol or betadine (iodine).  We clean with this to change his dressing AND the little circle (disk) that goes directly on his skin.  However, he's developed an allergic to this cleaner.  So ... we had to change everything.  (Not easy).  We're now using betadine and a silver disk.  Had it for a week and a half and so far,  YAY!  It's working.  His skin is looking awesome!

Next issue:  Ever since his gallbladder removal, we've had ... uh, er... how to say it delicately?  Lots of "blowout diapers".  Maybe 4 a day.  It's truly problematic.  Not sure why the change but let's say I've really increased my laundry recently!

Another issue:  Hypoglycemia.  Every day he is on his TPN for 18 hours and off for 6. This used to be a fine system.  Lately, his blood sugar is dropping.  It's dropping low enough for him to basically pass out every night.  And it's happening earlier and earlier.  His level last week was 41.  They upped the dextrose in his TPN and it didn't help really. 

We've been working on getting a glucometer so I can test at home BEFORE he passes out.  And a solution on what to do  to prevent this.  I should have the machine and testing strips by tomorrow.  And the protocol as well. 

Next issue:  Some of you might have remembered that Manny has had a "stye" on his left eye since September.  They come and go but never completely go away.  Well, this last week, it was the biggest it has ever been.  He could barely close his eye.  I put the warm compresses on it to get it to come to a "head" and it does but wow!  For the first time, he has another one on the bottom lid, same eye.  (Right where the top one is so they meet.)  They are both about the size of a pea to slightly bigger.  Waiting for his eye doctor appointment.  I started researching and found there is something called a "Recurrent Chalazion".  Must be what he has.  This picture is from when it was looking MUCH better. 

And the final issue:  Tuesday he got a 102 fever for about 3 hours then completely gone.  Wednesday, he's been teetering around 100.6 all day.  I talked to the Doc and we agreed on a plan.  If he stays with a fever by tomorrow morning, I will have to take him to the ER.  OR if his fever goes up, I will have to go in as soon as that happens.  (Praying.) 

Now lest you think that is all that's going on ... Luke (8) and Sam (10) were playing with the waterhose in the backyard (so they were barefoot) and Sam accidentally ran over Luke's toe (top of foot) with one of those ride in cars.  Long story short, thought he might have broken his toe or the bone on the top of the foot.  Took him to the ER but no break (thankfully) but he does have a "crush injury".  They said to be concerned if that part of his foot feels "numb" and it wasn't ... but tonight, it might be beginning to feel that way.  (We'll see in the morning.)  In the meantime, he's loving his crutches!

Mar 19, 2012


We have an announcement to make!  I know that our lives are crazy but I want to introduce you all to the newest member of our family.  That's right.  A 3 year old.  Girl.  Blonde hair, brown eyes.  Her birth name was Brandy but we have renamed her. 

Introducing Daisy:
She is a 4 pound Yorkie that was a rescue.  We had NO intention of getting a dog any time soon but she just kinda fell into our lap and it was impossible to say no to her.  She is just the perfect size for Manny to hold.  She doesn't yap or bark.  She is playful.  She is easy going and sweet.  She just fits in perfectly. 

And that's how we started our Spring Break.  We originally considered going on a trip somewhere ... but thought better of it, just in case.  Manny's just not stable enough at this point.  So we settled on a staycation instead. 

I didn't get photos of everything because our camera is missing and my phone doesn't take very good photos but I caught a few. 

We went bowling and all you can eat Pizza place, to Busch Gardens, Adventure Island, the Mall, the park, the big boys went with Daddy to an all boy event (shooting, archery, fishing, etc).  It was a perfect time!

This is at Busch Gardens and he did not want to leave this pond even after almost 2 hours in it.  He DID ask "Where the fish?" when told no fish, he said, "Where the alligators?" LOL

Manny about to head out of the house for the first time in his "Car".  We went down the street and it was so much fun watching him giggle.

At Adventure Island watching the kids play at "Splash Attack"

He said, "Take my picture, Mama"

On the disabled swing at our local park

In a baby swing.  What can I say?  The boy loves to swing.

Now lest you think that our vacation was without incident, I'll let you know just a few of those. 

One ... see that last picture of Manny at the park?  While there, the kids picked up a few caterpillars.  They've held these particular type before without troubles and we even had researched them ... harmless. 

That was Friday.  Saturday morning, Zoe woke up with a HORRIBLE rash.  Looked like 1000 bites on her neck and then hundreds more down her body.  Mostly trunk.  I immediately did a "What did we do different", running my own differential in my head.  The caterpillars were not immediately coming to my head but they eventually did.  It's the only thing we could think of.  This stuff itches horribly too.  Benadryl, hydrocortisone ... nothing is helping. 

Monday she was not allowed to go to school until the Doc cleared her ... afterall, this doesn't LOOK like an allergic reaction to bugs (especially bugs that didn't even bite here).  Tonight, she is tucked in with Prednisone and Atarax.  Hoping that takes the edge off enough for her to go to school tomorrow. 

Interesting tidbit about Zoe... she's getting progressively worse reactions to bug bites.  We're doing the prednisone this time again and starting to talk about an epi-pen.  She hasn't had any breathing troubles YET but I am afraid that is on it's way.  Like 2 weeks ago... ONE ant bit her on her forearm at recess and it swole up to a golf ball size.  Or she accidentally got one bite of food where there had been a shrimp (we know she is allergic) and she had a violent reaction.  (Just not breathing.)  So it's on our radar.  Poor baby! 

Regarding Manny ... he has been doing MOSTLY well.  (Thank God!)  His skin issues are still a problem.  During the week, he reacted seriously to a few different adhesives.  I seriously thought I might have to take him to the hospital to be admitted as it got close to cellulitis.  But I just kept trying things and eventually found a partial solution. 

Today (Monday) the home health nurse was happy with how much better his skin looked than last Monday.  But it is clear to see all the damage/healing/scabs.  (It had gotten bad enough to bleed.) 

Meanwhile, on Saturday, while we were out and about, I went to change Manny's diaper and noticed the most disgusting substance covering his pants and shirt.  Turns out, his gtube got enough pressure on it that it popped open and leaked out all the contents.  (There shouldn't have BEEN any contents.)  And it ate right through his skin.  Not even kidding or exaggerating.  As I VERY gently wiped off the nasty stuff, his skin bled.  (Can't even imagine how that feels~) 

I REALLY thought I'd have to take him to the ER with this.  'Cause if you're paying attention, his one skin allergy starts at his neck and goes down to mid chest.  This second issue started at mid chest and went down into the diaper area.  So the WHOLE FRONT CHEST. 

He has a candida type rash (yeast) over several parts of his body.  Can't seem to get ahead of it. 

Now the good news ... all the other kids are doing well. :)

Gotta run ... Daisy wants to play!!

Mar 12, 2012

MDA walkathon pics

Still don't have good pictures of Manny in his new wheelchair "car" ... but these will have to do for now.  It's the pictures from the MDA walkathon and him in his car.  Enjoy!

MDA's slogan is "Make a muscle, make a difference" ... if you notice, Even Manny is making his best muscle.

Two years ago, I saw THIS picture on a website.  It had a very short description of the baby.  Our family was eventually selected to be his parents.  Isn't he dreamy?? 

One interesting thing about this story is ... about 6 months before this, I felt God was saying that we needed to update our homestudy.  I knew that for some reason, there would eventually be a situation arise where in the future we would need to move FAST, that this paperwork would need to be in place. 

So our story goes ... saw his picture on March 11.  By March 26, he was living with us full time.  And trust me, there were delays along the way!  Those in the adoption world know just how ridiculously FAST this adoption was!  Two weeks from the time we first saw him until he lived with us. 

And now that has been two years.  WOW!

Mar 11, 2012


10 years ago, a shy preteen walked into our church with her parents for the first time.  Over the past decade, our two families have been through a lot together. 

Friday night, she got married and Dan and I got to be the Officiators of the wedding.  So very cool to be a part of that special day. 

Luke (8) and Zoe (6) got to be the Ring Bearer and Flower Girl. And I don't want to embarrass Luke but he was so cute.  A couple of days before the wedding I said something about him being the "Ring Bearer" and he got very upset and I couldn't figure out why.  He said he thought he was supposed to be the "Ring Bear" ... not sure what THAT job is but it made me laugh and realize I need to enunciate better.

I didn't get emotional during the whole thing until I saw Luke walk down the aisle.  He looked so grown up as he headed down that aisle straight to me and I flashed forward to his wedding. 

But what really got me was Zoe ... she was wearing a white wedding dress.  And my oh my!  My heart stopped.  And then Dan made a comment about it too and I had to just tune it all out for a second so I could do my duty of the wedding ceremony. 

Here are a few of our pictures from the wedding.  (Promise to send more when we get the "real" pictures.) 

Mar 6, 2012

Manny's Car

And there were tears ... 

That's how the story goes.  How did we get there? 

Many months ago, we were given a "loaner" or practice power chair to see if Manny could actually even physically be strong enough to be able to maneuver it.  We knew he was smart enough to do it, but what about strong enough?  The verdict was "sorta".  But this was also during the past few months when he has been in and out and in and out of the hospital not feeling well either. 

I still remember the first time he got in the chair.  I wasn't prepared for the feeling that would rush all over me.  We put in him.  I stood on the other side of the room and said, "Come here." 


For the first time in his life, he had a thought of "I'd like to go over there" and then his body did it. 

I still get teary eyed thinking of that moment.  I cannot begin to tell you the overwhelming sense of pride that it gives you to see that.  Liken it to seeing your child take his or her first steps. 

Eventually the loaner had to go back and we were without the chair again. 

I did notice, though, that his brain was "rewired" a bit by this exercise of having a chair to get around in and go where he wanted to go.  Like I would hold him and he would tell me, "Go that way, Mama" and he would point.  Previous to the chair, he never told us where he wanted to go.  I was THRILLED by this new thought process. 

Fast forward to about two months ago.  There was a meeting about how to see if we could possibly get insurance to cover a chair for him.  It seemed an impossibility.  We knew it would be out of our price range to just pay for it.  So the MDA office, the Mobility Clinic person, the Wheelchair rep and I just decided to see what would come up, see if we could have any bright ideas, get some numbers on paper and go from there. 

So imagine my shock when I get an email about a week later that there was a wheelchair that had been donated to the local MDA office and they wanted Manny to have the chair.  The donator only wanted the chair to go to a good family.  They thought of us. 


And I wondered about this chair.  And it's owner.  Was this chair donated because the kid outgrew it or because they no longer needed it?  And in my heart I prayed that we would somehow get to know who it came from. 

Meanwhile, Manny has been in the hospital (as you all know) so I didn't think much of the chair any more. 

Saturday was the MDA walkathon.  We were all out there with close to 1000 other people where lots of money was raised.  As I stood at the starting line about to push Manny on the walk, a lady leans over and says, "Is this Manny?"  I didn't recognize her and she said that it was her daughter's chair that was being donated to us. 

At that moment I knew. 

I immediately grabbed that lady and hugged her.  We stood there hugging and crying.  Why?  because I got my answer.  That lady (and many others around her) were wearing pink t-shirts that said, "In memory of Bella Rose".  And on the back of the mom and dad's shirt, it said something like, "I'd walk to heaven and back just to see her face again." with a picture of Bella Rose. 

And the stark reality of this world hits hard in a moment like this. 

I walked around the rest of the track in tears most of the way. 

And as we walked, I noticed the father of Bella Rose pulling an empty wagon.  A symbol. 


Today, I get a call from the Wheelchair rep, Gary.  He said if we're going to be home, the chair is ready.  Before he got any further, I told him that I had gotten to meet her family this weekend.  He started telling me about how virtually impossible it was for him to go get that wheelchair from the family.  He recounted about how he had worked so hard for her to get it, how he delivered it on her birthday (apparently not all that long ago). 

I told him that I would be thrilled to get the chair, but couldn't promise that I wouldn't be crying.  He agreed. 

I didn't tell Manny that his chair was coming, I thought I'd just surprise him.  And true to Manny form, he didn't disappoint.  He squealed in delight, clapped and "danced".  It put a huge smile on the delivery guy's faces!  Manny calls it his "Car". 

I figured it would be pink, considering it was Bella Rose's favorite color.  But ... it is blue.  Hmmm.  I guess Gary noticed me looking at that and told me the story.  It's not a fancy story, but bottom line is ... Manny has a blue wheelchair.  It's in perfect condition.  Barely used.  All paid for.  A gift I can hardly get my head around. 

I'm sure he'll be speeding around in it in no time, terrorizing the cats no doubt. 

But tonight, as you rejoice with us over the gift of this chair, please pray for Bella Rose's family.  I cannot imagine the loss they are feeling.  They must feel so lost and empty.  Pray for the peace that passes understanding.  Pray for generous blessings for them. 

I know I will, every time I see Manny in his "car".   

Mar 1, 2012


Sunday ... all the pieces fell perfectly into place and we were discharged (a day early).  It took the signatures of 5 specialists ... and we did it.  We got his bandages changed on his wound (looks "Great" according to the surgeon, looks "HORRIBLE" according to the Mom).  We got his last dosage of antibiotics.  And got out of there. 

He asked for hugs from all the nurses on the way out.  Needless to say, they did it!  (He's a flirt.) 

Monday ... My parents offered to drive Manny, Kaley and me up to Shands in Gainesville (quite north of us) to keep the GI appointment with them.  (Thus the reason everyone agreed to let us out a day early.) 

Long story short, the meeting was a bit discouraging.  Back in October 21 when we were released, they said to come back October 31 and we'll have a new game plan and pick up where we left off.  Fast forward 4 months.  (We were never able to get back in between due to being in the hospital over and over and over.) 

I gave them a printed version of the hospitalizations, issues, central lines, etc over the past 4 months since they'd seen us.  One doc was completely up on the latest as I've talked to her over the months but the head of the department was only vaguely familiar with the happenings. 

After much discussion, the bottom line is ... they have come up with no new ideas yet.  The only thing that was really discussed is that he would call the "guru" of Pediatric Mitochondrial issues and see if they come come up with a plan.  Well, it's Thursday afternoon as I write this and I've heard nothing from them.  Makes me think I know the answer. 

The issue:  Manny is not able to eat by mouth or tubes as his digestive system has become so compromised that it puts his life in immediate danger to feed him even a few ounces of formula (of any type... trust me, we TRIED that).  So they put him on TPN ... a life saver.  But it's also damaging his organs at an alarming rate.  At this rate, well, let's just say we don't have long before another body part is damaged. 

Bottom line:  Without immediate divine intervention on a massive scale (and we know He is capable), Manny's issues with food becomes lifethreatening.  Without this miracle, the doctors do not believe he can survive long.  (No one wants to put a time frame on it and I'm thankful for that.)  But they quote to me that TPN was not designed to sustain people for more than a few months.  (We know of people who have done it for YEARS but they are the exception and their organs are not affected by it like Manny's are.) 

We are still hoping that some Mitochondrial Doctor might be able to solve the mystery of what is wrong and have a viable treatment.  But that hope is fading too ... they use the 'needle in a haystack' analogy and say that it could 'take years' ... which we know he doesn't have.  And most do not have treatments/cures.  So it might be a moot point anyway. 

But for today ... Manny is hanging in there.  TODAY he is improving with his surgical site.  Today he is laughing and talking and learning and growing.  I am CHOOSING to focus on this and not the other. 

THIS is the day the Lord has made and we WILL rejoice and be glad in it. 

My reflection point of the day ... Pick one: 
CHOOSE to love someone today who is a pain in your hiney. 
Choose to overlook the flaws of the people around you. 
Choose to forgive and move on with your life. 
Choose to let go of the anger and bitterness that's been built up. 
Choose to see the good in the situation in front of you and not the bad stuff. 
Choose to be a proactive participator in your life, not watching from the sidelines.
Choose to say one positive thing to the next 5 people you see/talk to. 
Choose to be an encourager. 
Choose to praise God in the big and small things, including those things you don't like. 

Better yet .... why not choose them all? 

Life is too short and uncertain to focus on the wrong stuff. 
Trust me.