Apr 22, 2012

A Mother's Love is ...

A few weeks ago, I was talking with the kids about what "A Mother's Love is".  I'm affectionately called "The Metaphor Queen" by friends.  So how else would I explain this. 

A mother is like a shepherd of the sheep.  They all play happily in the open meadow, feeling safe and secure and loved.  Meanwhile, the shepherd is watching carefully, guarding but still able to give a bit of freedom and space.  Not much is expected of the sheep during the meadow time.  The sheep start to equate the open meadow space AS love.

Then one day, the Shepherd has to move the sheep from one open meadow to another place of safety.  But to do so, they must cross this dangerous bridge.  One the one side are hungry wolves.  On the other side a slippery slope.  The sheep are blissfully unaware of the danger and want to continue to just play. 

The shepard will do WHATEVER it takes to get those sheep back to safety.  She will push.  She will pull.  She will threaten.  She will drag.  She will yell.  She WILL get those sheep over the dangerous path back to safety.  NO.MATTER.WHAT. 

She will NOT let the wolves get her sheep.  She will NOT let one slip down the hill. 

And now the little sheep are like, "Wait a minute!  I thought you loved me!!" 

But truthfully, it is where TRUE LOVE is demonstrated.  In the hard times. 

The shephard has the goal to get back to safety.  To get back to the meadow again.  WITH EVERY SINGLE SHEEP IN TOW UNHARMED. 

This shepard will get in the way of the ravenous wolves and even bodily harm them if she has to.  She will put herself in harms way to save a helpless sheep.  She will throw herself in front of the slippery slope as to not allow one sheep to slip down that hill to it's death. 

Love isn't in the meadow.  Love is on the dangerous path. 

THIS is what true love is.  And I have the scars to prove it. 

I hope all my little sheep understand this one day. 

Apr 15, 2012

This is What Mothers Do

Sometimes I long to worry about the "regular" things like did I remember the milk at the store? Do we have enough diapers?  Is that cough the start of a cold?  My child has a low grade fever, maybe I'll just give them some extra fluids and tuck them into my bed for a snuggle. 

I am by NO means a "newbie" mom.  I have 5 other kids which all have some pretty strong special needs themselves and some rare conditions and some life threatening conditions.  I also took in medical foster children for about 9 years.  I was a nanny for several families who had SN kids. 

And yet, Manny is a whole new plateau of demands on my brain power, my motherly reserves, my faith, my everything.  And completely worth every nanosecond and ounce of strength I can muster.  But it's a lot.

There's no way I can ever complain either.  First of all, I don't have time to complain.  But secondly, there's this nagging thought that hits me immediately:  Your life could get "easier" in a flash.    And I muster up some more strength. 

April 5 I woke up with this gnawing in my spirit and a lump in my stomach (metaphorically speaking).  I even told Dan I felt like there was impending news and I didn't feel it was good.  Something had 'shifted'.  By that evening, Manny started in with a low grade fever.  10 days later he still has it (plus a whole bunch of new symptoms). 

I head in the morning to the Endocrinologist to see if they can figure out the new metabolic "shift" that Manny has experienced.  But I can read.  I can research.  I know the literature.  And I know what it infers, implies and means. 

Let's suffice to say (for now) that Manny is in need of a whole new miracle.  Now the good news is that I happen to know the Miracle Maker.  And I happen to know He is very, very fond of Manny.  I also know many people are talking to this Miracle Maker about Manny and it pleases Him very much.  So ... if we're going to get one, we're hooked up to the right source. 

And my heart is heavy.  My stomach is still in my throat.  I feel numb.  Exhausted.  Overwhelmed.  And I go to my Father for comfort and He offers it.  But He just tells me it will all be OK.  Which I know.  THIS I do not doubt. 

I also know that God sometimes makes everything OK by taking little children home.  I truly, truly believe that He only does that when that is the best thing for the child.  And my earthly eyes and heart just can't see how it's the merciful thing to do sometimes but I TRUST that He knows what He is doing and isn't mean or evil or vindictive.  I trust that He's weighed out all the decisions and has considered all the alternatives. 

And all that is fine ... in theory. 

But ... in reality?  I'm very aware that Manny is in the palm of God's very capable hands.  But I'm not ready to let God have Manny full time.

But I can also do the math.  And without a divine intervention NOW,  well ...

I find myself often caught between the two worlds.  I fight, fight, fight to keep Manny healthy, getting the care he needs, praying for wisdom and healing.  It's a 24 hour a day battle that I NEVER stop fighting.  And I will fight it until this fight is finished.  I need to know I've done EVERYTHING that I could do to give Manny the quality of life he so deserves.  I don't ever want to wonder "what if" or have regrets of holding back my love or my faith or my prayers or my capabilities.  I'm ALL IN. 

And then there's the other side where I see God preparing my heart.  I see the circumstances where He leads me to books or conversations or whatever to help me prepare for when God calls him home.  And with that comes HORRIBLE, HORRIBLE, unspeakable decisons that have to be made.  Cremation or burial?  Or maybe donate his organs or whole body to science so other kids can be healed of this horrible disease? 

And that's about how far I get (about 3 seconds in) when I force myself to not go down that road.  But the truth is ... if he dies, I need to have these plans in place ahead of time. 

And then I wonder if those thoughts themselves are a lack of faith (I know they're not).  But I've come to understand, Parents have to make hard decisions.  We are forced to buck up and do the most incredibly difficult jobs in the world. 

So after those brief seconds (trust me, I don't harbor or entertain these passing thoughts), I get back to fighting for Manny which involves putting one foot in front of the other.  Finish the task right in front of me.  Today those tasks involve writing a summary update of what is currently happening with Manny's metabolic issues and to write all the questions/concerns I have.  I'm also writing a letter to the head doctor that I usually see at the Hospital to let him know some of the things that were mishandled when Manny was admitted last week.  I'm packing ... just in case they need to run further tests.  (The clinic where we're going is about 3 hours north of us.)  I'm arranging for the kids and the dog to get cared for in case I'm gone for a while. 

Somewhere in the business, I can almost push those thoughts to the back of my head.  But they're always there.  And currently, the newest symptoms are particularly discouraging as it seems Manny's whole metabolic processes are shutting down.  So it's very, very serious. 

I don't mean to put this heavy stuff on anyone.  I don't need anyone to worry about me and my mental state. In fact, I'm writing this because it seems that all I write lately is data and fact and avoid talking about feelings.  So today I thought I'd let you in on that.  My heart is heavy. 

I'm always reminded by a scripture that basically says "Mary considered/hid these things in her heart."  This is referring to Mary, the mother of Jesus.  And I wonder what she felt as she saw her son being crucified.  We know she was there as He hung on the cross.  And I understand why.  Most of His disciples had left scriptures seem to indicate, but His mother?  Where else would she be? 

She had the heart of a mother. 

This is what Mothers do. 

So I, too, consider things in my heart. 

Apr 13, 2012

Always something

By 1am, we were finally asleep.  5am the nurse was concerned that he still hadn't peed (more than 12 hours).  So for the next hour, we worked on what to do about that... bolus? cath him?  call the doc? other?  Finally, we decided on a higher rate of fluids.  He still didn't pee for about 15 hours, but finally did. 

Meanwhile, another concern is his very low blood sugar.  Typically, a person who is in the middle of eating should have a blood sugar of about 120-150 give or take.  2 hours after food, it should be more like 100-120.  Below 70 is the start of people being slightly concerned. 

Manny used to do that.  Recently, he's been in the 60-70 range while ON food!  (His "food" is basically sugar water with a few minerals/vitamins.)  So they take blood sugar readings often.  The strange part is ... he's doing better on this (basically IV fluids with double the sugar content plus a few minerals) than he has been on TPN.  (Shouldn't be.)  When we got here his glucose was 66.  After 2 hours on the fluids it was 76. 

This morning he was sleeping peacefully and was rudely awakened by another blood glucose level.  It's just the small finger prick but that's not a great way to wake up!  This one was much improved at 106.  (And yes, this is WHILE eating so it's still way under what it should be but getting closer.) 
Photo from today, still feeling well enough to play his ipad from bed.

Thursday: During the night, it was confirmed that this was another false alarm, he did NOT have a central line infection! Yay.

5am, they do a basic blood test for all patients on TPN to see their metabolic status.  When Manny came in 36 hours earlier, his potassium was 4.5.  This morning it was 2.9.  (According to their system, this is a "critical value".)  They ran around my room like proverbial headless chickens and got a heart monitor on him and immediately started IV potassium.  Why?  It can mess with your heart and there are no warning signs, your heart just stops working right. 

8 hours later, they took the IV down and immediately did a blood test.  It showed his potassium levels were within normal range again.  And they discharged us. 

This is where the story gets a little tricky.  I wanted to go home.  Afterall, he did not have an infection.  BUT, this potassium level was not stable yet and it greatly concerned me.  His regular hospitalist was not there and we had a newbie doc.  I wasn't sure discharge was the right call.  But I went home anyway. 

Friday:  I asked my pediatrician for the blood test (BMP) to show his potassium levels.  I waited all day for the results!  Nervewrecking for sure.  7:30 pm I finally got the call.  The level was just out of normal.  3.4.  Good news, right?  Not really.  It means we don't have to trapse right back to the ER but it's not where it should be.  It should be stable.  16 hours after the 4.2 it should still be near there.  But it's not.  And we have no clue why it's falling. 

Meanwhile, the GI docs in Gainesville are very concerned about this (they were shocked that he was discharged with the potassium issue).  And add that with the glucose issue and they have reason to be concerned.  Tonight, they have switched him from 18 hours on/6 hours off TPN to 24 hour TPN.  He will no longer be getting a break.  Which has pros/cons.  Like he can't do the ethanol lock to prevent infections and it's harder on his liver.  But it's safer than letting his glucose plummet.  Tonight's level was 29.  Uh, yes, you read that right.  VERY dangerous. 

So they set him an emergency consult/visit with their Endocrinologist first thing Monday morning.  We just have to keep him stable over the weekend. 

Always something, huh?

Apr 11, 2012

How did we land here again?

So how did we land here again you might be asking? 

Thursday night he had a low grade fever.  Friday, ditto.  Saturday, ditto.  Sunday, ditto. The fever was below the threshold of 100.4 where we HAVE to go get a blood culture.  But my mama gut was telling me that something was amiss.  So Monday I called and asked for a blood culture. 

Tuesday morning, my heart skipped a beat as I got a phone call from that doc.  Turns out she was calling about his consistently low and dropping blood glucose levels and wants us to see an endocrinologist ASAP.  (Whew! Felt we had dodged a bullet.) 

Tuesday 4:30 pm in the middle of homework and dinner preparation, I get a phone call from the doc's office again.  The nurse said,"How's he been feeling?"  I told her he's had fevers and said, "Why? Do you have news of our blood culture?"  YES.  It's positive.  (They were shocked that I knew to ask for a culture with such "gray, non-descript symptoms".) 

For the next hour and a half, I ran around packing, phoning, kissing the kids, getting arrangements made and then made a mad dash for the hospital.  By 7pm we were admitted and up on our "usual" floor.  We've been away from here for 42 days, by far, our longest stretch since September.  And I was getting used to it. 

I told Manny on the way that we were going to the hospital.  He said, "Just talking?"  That's been my way of saying that nothing painful was going to happen.  (Like a well visit or follow up visit.)  I had to tell him the truth. 

By 9pm, the IV team leaves.  But tonight, she stayed late to help us out.  He's such a difficult blood draw that they give us only the best of the best, someone who has done most of his procedures for almost 2 years now.  And she got it on the first stick!  I felt huge relief! 

Now some of you might be wondering ... why a blood stick if he has a central line.  Most of the labs can be drawn off the central line.  But they need to know if he has bacteria growing ONLY on the line or in the blood system too.  The only way to get that is with a peripheral stick. 

About an hour later, the nurse comes in ... HORRIFIED.  I can tell by the sheepish look on her face that this is not good news.  Apparently, the lab dropped the glass container with that peripheral blood culture!  Seriously? 

So now, he's already been tortured once.  And now again?  And with the IV  team gone for the night?  You've gotta be kidding me. 

But somehow (thank you, Lord), the nurse got it on the first stick too!  (Never happens with Manny.) 

About 30 minutes later they came in and did a glucose blood stick to see if the fluids they have him on are sufficient.  And thankfully, they were.  So it's midnight and he has JUST fallen asleep.  I'm exhausted and traumatized all over again.  And even our favorite "Doc" is on vacation right now.  The nerve of him to try to take family time with his (Very pregnant) wife and 4 kids! (humpf) 

So what does all this mean?  Well, remember back in February and he had a blood culture that said it was positive but turned out to be a contaminant (meaning something got on it during the collection process)?  Well, that was a bacillus which is almost always just a contaminant and they knew right away that this was likely nothing.  And they were right. 

This time, this is rarely a contaminant.  It's too soon to know exactly what is growing but they think this one is real.  We just dont' know if it's only on the central catheter or if it's in the blood.  (One is obviously easier to treat than the other.)  It means we could be here for a while again.  I'll know more tomorrow morning when the infectious diseases doc rounds. 

In the meantime, I have some specific prayer requests.  First, Pray for  Manny ... that he is healed quickly, that he has little to no pain, for protection while in the hospital.  For Kaley ... that she is blessed for her sacrifice of love to come help willingly to the hospital.  For Dan ... his business not to suffer as he is distracted by his job AND mine.  For his ability to take care of both well and his worry is reasonable (I know he is always worried about me and Manny).  For the other kids ... they tend to fall through the cracks in strange and subtle ways.  And they all manifest their abandonment issues in different ways.  For my family ... who take up some of the slack for us like schlepping kids from school, etc. to be blessed.  For me... to maintain health, to be wise about what to do on his behalf, how God wants me to use this time.

Apr 5, 2012


Silent.  I know I've been more silent than normal.  For a lot of reasons.

One is that I just don't have the time to reflect on my thoughts often, much less have the chance to
 write them down.

Next,  we've been hunkering down into our new "normal".  I know that we are always only one issue away from landing back in the hospital but ... so far, so good.  We've had numerous brushes with it since being discharged February 27, but this is the longest we've been out of the hospital since August!

Tonight we had another of those 'brushes'.  OK you know how he's on the Ethanol Lock Therapy 3 times a week?  Today was one of those days.  And tonight it was time to withdraw the medicine.  Except it wouldn't withdraw.  An hour and a half later and all the tricks I know ... still nothing.  Called the on call nurse.  She didn't know what to do so she called our regular nurse (the only pediatric nurse) who was headed out of state to visit her daughter (which is why I didn't call her directly). 

She knows me well enough to know I tried EVERYTHING else first and that I was only calling to see if they have any extra tricks up their sleeve.  They did not.  The protocol has this scenario in it.  If it has to be flushed versus withdrawn, I just have to over flush and then watch him. 

But of course it wouldn't flush either. 

Finally ... it did.  (Whew!... another close call to a hospital visit.)

And then there is Jacob.  We went Tuesday to his Nephrologist.  The news is mostly good.  The numbers (showing kidney function) aren't horrible but they're a bit worse than 4 months ago. 

Basically, when we discovered this about him almost 2 years ago, his number on this one scale was a 3.  It has dropped over time.  4 months ago, it was 0.5.  And now it's 1.1    So see, not horrible, but going back up slightly. 

Then there's the Spring Cleaning.  Please tell me I am not the only Mother of hoarders.  I HATE clutter with all my heart.  I purge deeply and often.  And yet, the kids all seem to have this strange need to keep EVERYTHING.  2 kids in particular have true hoarding issues for real.  (For one, I know it's related to early issues of not having enough.) 

Trash versus treasure.  I'm trying to teach this lesson.  It's not sinking in yet. 

I WAS able to get through to one child.  I offered that they could keep the items forever if we took a picture of it.  And it worked!  We were able to purge all sorts of stuff that hadn't been used in forever this way.  (I always love when I have a bright idea that works.) 

So ... see how boring our lives are?  THIS is why I haven't been blogging!