Why does this make me cry?

There has been a lot to say lately and I’ve even attempted to write blogs about the latest happenings but …  (Let me back up)

One of the great things about going to the hospital so often is that we become friends.  We want to see more about each other’s lives.  We start to share emails and phone calls.  We become friends on social networking sites.  Etc. 

So my blog used to be just random “Reflections”.  Random thoughts or experiences or feelings.  I rarely would edit myself.  I would say what was on my mind and heart and just put it out there to the Universe.  Now, I tend to be a fairly kind and diplomatic person.  I tend to try to say things from a positive point of view.  I also believe it’s not ever a good idea to put something in an email or blog or text that you wouldn’t say to the person.  So with those general guidelines, I would just write my blog. 

But now?  I feel guarded.  I feel like I have to be super careful.  So careful that I’ve said nothing.  And that leaves me with no place to put my thoughts and feelings and reflections.  (Well, I guess I’m reflecting now.) 

Not sure how to rectify that because I know I have things I want to say.  There are questions you probably want to ask (but don’t want to pry). 

So where does that leave me?  Unchartered territory. 

I will TRY to continue to put down my feelings and thoughts.  I will try to do it with dignity and grace.  I will try to do it with kindness and mercy.  But I will again start to share the story of what is going on with us. 

So with that in mind … 

We got home from the hospital in late December.  He had another unexplained fever.  With those, we have to treat it like it’s a line infection until proven otherwise.  It was ruled out and we went home. 

I already wrote a post about how torturous that hospitalization was in this post: http://destinyshousechurch.blogspot.com/2012/12/discharged-now-what.html

Several weeks have passed … we have done NO feedings.  And he’s GREAT.  No coughs, no breathing troubles.  Nothing.  I feel a huge weight lifted off my shoulders but it’s looming.  I have made all these decisions with just my pediatrician.  The GI does not know we have stopped the feeds.  The GI thinks I am scheduling with the surgeon’s office and am continuing the feeds. 

Meanwhile I have been connected with the Palliative Care Team.  Now before you go and get all confused, this does not mean what you probably think it means.  They also deal with complex and long term care.  THAT is the reason we are with them.  They do a wholistic approach to medical care and that’s what I needed.  The Doctor was great and said we needed a Care Conference set up.  We have been waiting for that conference.  As of today (1/18), it’s been 5 weeks since the idea was first brought up and no meeting yet.  So I felt like I was in limbo.  It delayed the need for the surgery consult but it also means I’m flailing on my own out here with GI decisions. 

Yesterday, I contacted the Palliative Care Doctor and asked how to proceed.  As I wrote him, I was in tears.  Clearly, the whole conversation struck a nerve.  I’m NEVER in tears over this stuff … except I realized that back when I wrote the last post, I was crying then too.  So I’ve just been on “pause” with the emotions of it all and while I started to talk about it again, I tapped the same emotions. 

The PCare Doctor called me and thankfully by then, I had my emotions back in check.  I was having a hard time saying what I wanted.  The whole situation has gotten to be a huge mess!   No answer seems like a good one. 

After all was said and done and the proverbial dust settled, I was able to sort out why this is so hard.  And it’s complex and too much to really share here.  But one piece I will share. 

Bottom line … without Divine Intervention (which we’re praying for), Manny has two main issues that he faces that are terminal.  The Muscular Dystrophy causes his lungs to be weakened and these kids tend to die of respiratory failure.  That can come when they are say 10-20 and their lungs just give out.  Or it can come from an infection (cold, flu) that just gets ahead of the lungs and takes them out. 

The second condition is the TPN and Central line.  A body was not designed to get it’s nutrition this way.  It’s very hard on the body. Some people can live on TPN for 30 years or more.  And others it takes them out early.  What’s the difference? No one knows.  My personal theory is that in Manny’s case, whatever causes him to not be able to metabolize food the normal way causes his body to not metabolize this correctly either.  He is showing signs of liver failure.  That’s permanent.  He’s not a candidate for a liver transplant.  You cannot live without a liver.  Secondarily is the central line itself … it’s an IV that resides right above the heart.  So any infection that gets in there can be potentially fatal.  Remember December 2011?  He barely survived that line infection!  The AMAZING news is that he has not had one since.  Precautions and protocols and prayers have pulled that off.  But it’s always lurking. 

So that’s the big picture. 

Throw in the eating issue and it causes BOTH of these issues to go into hyperdrive.  If we could get him eating and get him off TPN entirely, then we might be able to have a fair discussion.  But the truth is, he wasn’t able to handle even 5% of his daily intake before it sent him into severe respiratory distress.  We see him struggle for breath.  I have to hear him beg me, “Help me Mama”.  It’s torture on him and us.  I’ve put bits and pieces of it on the blog. 

So basically … I was in tears because I came to a decision.  I chose that I would rather him die of liver failure than respiratory distress caused by attempting to eat. 

How’s that for blunt? 

I said officially STOP TRYING TO KILL MY KID. 

And I was heard. 

The PCare doctor called the GI that I wanted to be dealing with.  He told her the updated situation.  Said I would rather be under her care than the doctor I had been working with (the one pushing for the surgery who said he would “NOT babysit TPN”).  She agreed.  And it was done. 

And I cried some more. 

That’s a lot of responsibility I just placed on my shoulders.  I cry as I type this now.  I can’t describe how final that seems.  How ridiculous it is to make a Mom decide between eating and breathing.  How impossible the choice. 

But it’s done. 

I still haven’t made an appointment with the GI who agreed to take us on.  (I know her well, she is the one who almost always sees us when we are in the hospital but she wasn’t officially our doctor but is now.)  I don’t know why I hesitate.  But I just am not ready to face the next steps I guess. 

As I sit here, Manny is playing beside me in his chair.  He's playing with trucks and tractors and trains, just like any little boy should be doing.  He’s making train and noises.  He loves to crash his monster truck into other things and then say, “Oh, that’s gotta hurt!” He makes my heart smile. 

I love the feeling of peace I have when he is off food.  I know that sounds completely insane but it’s honest.  When he’s on food, I have to sit and watch him like a hawk.  He starts to gag silently and loses his breath.  He starts to aspirate it and he can’t catch his breath.  He then loses his ability to breathe right (day and night).  He needs oxygen and even that doesn’t help.  His heart rate goes dangerously high.  He begs for help.  Etc etc. 

It’s torture.  On him and us.  And I can never take my eyes off him.  Every minute of the day I’m scared if he’s going to survive the day.  Scared I might need to call 911.  I don’t breathe because he can’t. 

And when he’s off food, he is normal.  There are no scary moments.  He can breathe.  He is just a little boy playing with his toys.  I am at peace. 

It’s something I’ve NEVER been able to get across to ANY of my doctors.  Just how drastic the difference is.  How complete the transformation.  How different the quality of life is … for all of us. 

And so I chose peace. 

I chose breathing. 

I chose to have more moments of playing happily at his high chair. 

So why does this make me cry? 

 

 

Not Seizures

Remember how several weeks ago I was all worried about Seizures?  Manny was in the hospital and he was obviously sick or he wouldn’t have been there.  But then he would have a trigger of something very unpleasant that would cause him to cry or get upset.  That would last for several minutes (crying, screaming, raging, angry, etc. ) and then he would sleep for minutes to hours.  There’s a certain type of sleep that’s called “post ictal”.  And this is what it looked like. 

Now you have to understand, Manny is NEVER crying, screaming, raging.  And yes, I understand that it could be a culmination of the tortures having been done to him.  Or it could be behavioral.  Or possibly even him pitching a fit.  But the sleep part cannot be. 

There was also a look in his face during these episodes that made him look like he was not there.  I would have said “Absent seizures”.

Meanwhile, Manny is a bright guy.  He is super smart.  But he also has a brightness in his eyes.  He is very interactive and engaging.  He WANTS to connect with people. 

And this was disappearing.  He started to have a dull look on his face all the time.  He was not behind his eyes much of the time.  He was withdrawing, sullen and cranky. 

I was watching him slip away. 

Two weeks ago, there was a day that had me in tears.  He screamed and cried and raged for about 6 hours.  He would have a moment here and there where he would be quiet but … it was pretty much 6 straight hours.  NOTHING helped.  Nothing worked. 

The next day, it was a repeat of the same thing.  I was just about ready to call his Palliative care doctor.  I am NOT one for medicines but it seemed like this was his new normal and this was not OK with me.  If he was going to be out of control all the time, I was going to need to have an emergency stash of a medicine that could help him. 

Not for me.  For him.  I fight CONSTANTLY for his quality of life.  I fight to ensure that he is happy.  And he wasn’t. 

I cried for a long time that night.  

I was determined I would get to the bottom of this and find a way to help him.  Long story short, I reviewed in my head when this started, how it began, what are the details and the triggers.  And it hit me, this all started about the time we started on a medicine. 

So I stopped giving it to him.  Figured it was worth a shot. 

The next day, he had a few minor issues but pretty much was calm and under control.  Even the kids noticed Manny wasn’t grumpy. 

By the end of the third day off the medicine, he had no rages or issues.  The light started to come back in his eyes. 

By the end of a week off, I had my baby back.  He is fully engaged.  Learning.  Playing.  The brightness is back. 

It’s not “proof” that it was the drug.  But it’s enough evidence for me.  I’m convinced.  I have no intention of putting him back on this medicine.  (Yes, I let his doctors know I removed him from it.) 

As I write this, he’s been off the medicine for 3 weeks.  Still no “seizures”.  No more of those blank stares.  No more rages.  Now it’s just “regular” 3 year old stuff.  (OK maybe more than the regular 3 year old stuff ... there's some frustration and pain he's dealing with and we're working on a solution for these.)

I feel like a detective all the time.  I pour over literature.  I read through medical journals.  I chat with I can’t live with that.  mothers of complex kiddos.  All the time I am trying to figure out a puzzle.  Feeds, breathing, neurological, pharmacology, etc.  I feel like I’m studying for a crash medical course but if I don’t get it right, it’s not just getting an “F” on a test, it’s failing Manny.  That’s not an option. 

But in this case, I feel a huge HUGE relief.  This isn’t about a neurological decline.  It’s not seizures.  It’s not the new normal. 

 

 

Dragon Mom

I was “That” kid.  Straight A student. Captain of the cheerleading team and volleyball team.  I ran track.  I sang (and won) singing competitions.  Competition was important to me.  Grades were everything. 

Fast forward.

Many of my friends are all about the latest outfits for their kids, the best colleges, getting the right grades, having a well rounded “resume”, extracurricular activities.  They are trying to help their kids get ahead.  Recently I’ve heard it termed the “Tiger Mom”.  And I understand it.  I thought for sure that is the kind of mom I would be. 

I have 6 kids with varying degrees of special needs.  My focus is soooo completely not the same.  I care about happiness and health and balance.  I fight for these things.  I teach citizenship and morality, how to make friends and skills needed to get a job. 

I couldn’t care less about the tiger mom type of list. 

I think life is short.  Childhood is even shorter. 

And I ask myself often … what is this life all about?  And not to sound trite but … “Love the Lord your God with all your heart and with all your soul and with all your mind.  This is the first and greatest commandment.  And the second is like it: Love your neighbor as yourself.” (Matthew 22:37-39)

So I wonder often how to do THAT.  And I have no clue. 

And what about Manny?  How do you raise a child that you’re not sure will live until adulthood?  I know that’s a heavy sentence out of the clear blue.  But it’s an honest question. 

A few months ago, I had a decision to make about a trip and they suggested I make it based on what Manny wants to be when he grows up.  And it hit me …

I’ve never asked him. 

You know how you ask every child by the age of 3 or so what they want to be when they grow up.  Fireman? Ballerina?

Um… I had no clue.   

I had never asked him. 

As I was reflecting on this whole conundrum the other day, I stumbled across an article. 

It’s a whole different take on the subject.  Hope you click on the link and read it.  It’s about a “Dragon Mom”.  Maybe you will begin to understand me a bit better by reading through this author’s eyes.   

 http://www.nytimes.com/2011/10/16/opinion/sunday/notes-from-a-dragon-mom.html?smid=fb-share&_r=0

 

Discharged, now what

So we were discharged.  2 days in the hospital.  His labs weren’t the greatest but we were able to go home anyway.  We have no clue what caused the fever but it went away so we’re good.  

While there, the secondary GI came in and gave her opinion about how we should proceed with trialing Manny’s feeds.  I was not thrilled.  It caught me completely off guard in fact.  She was seconding the idea of doing a fairly radical and major surgery.  She wanted me to consult with a surgeon I don’t know, not our usual one.   That made me feel very anxious.  (Understatement.) 

Learning how to bounce the chair!

 

I wrote a prayer request (vague one) on Facebook and it was answered in a couple of ways.  First, a friend called me and offered a piece of the puzzle that will serve as my plan as I go forward.  Secondly, the next day, the GI came in and said she had reconsidered and was recommending a more conservative approach first, only heading to surgery if the other plans failed.  See?  God is good. 

In the meantime, however, I asked Doc what he would do in my “impossible” situation.  See, if I did the surgery and it fails, I would feel horrible knowing I went against my better judgment.  But if I don’t do it, and he goes further into liver failure, I will always wonder “what if”.  He said he would think about it.  The next day, he came in and said that if it were his son, he wouldn’t be able to do the surgery knowing the risk is so high and the likelihood of a good outcome so low.  Not worth the risk. 

Meanwhile, remember the continuing saga of the low red blood cells?  We did an iron test and they all came back horribly low.  He needed iron.  So while there, we got two days of IV iron.  It’s not enough but it’s a start. 

Finally, while there, the GI wanted to start Manny back on 5 cc’s of fluid continually. That will be 120ccs per day.  In real people words, that’s 4 ounces, given a drip at a time.  It’s not much.  But it’s a start. 

So following is the sequence of events describing how that went:

1)      December 24-25 to being fed:  he had no cough, no respiratory symptoms.  His heart rate was around 100 and respiratory rate about 25.  No respiratory distress of any type.  Sats were 98 and up.  No output from his Gtube. 

2)      December 25 3pm: Started feeds into his jport, (5 cc/hour continual)  he immediately (within 2 hours) started with a wet cough.  You can hear it in his upper lungs.  Heart rate hung more like 130-150.  Respiratory rate 35.  Mild respiratory distress that worsened as we continue the feeds … grunting, flaring, retracting.    He had output from his Gtube that was greater than the imput into the Jtube.  (100 was in and 125 was out.)

3)      By 4pm on December 26 (25 hours into the feeds), we had to stop the feeds.  Then during the night the worst of it happened.  His cough got so bad and his sats dropped.  They would recover back up to high 90’s once he was able to cough well but it dropped into the low 80s and hung there for hours.  Oxygen doesn’t always bring it up as it’s an airway issue.

4)      Our plan had been to give him the night off and restart by morning but now we’re not sure that’s the best choice since his lungs are still junky as I write this at 2pm on the 27^th. 

5)      I stopped the feeds prior to feeds backing up into his stomach.  (That’s what normally happens with time.  The output from the gtube was all basically clearish.)  Under these circumstances, it shows what I’ve been saying all along … there are TWO issues.  One is the feeds backing up which could be  potentially “fixed” by a surgical J.  But the other is some outrageous increased secretions that cause him to aspirate. That would NOT be solved by the surgery. 

At 11 months we were told he would not live to see his first birthday, for sure not his next Christmas. He has had 3 birthdays and 3 Christmases since then. 12/26 he was 3 1/2. Wow

 

Where we stand

·         Goal:  I want to do feeds but I want him to be safe.  Not sure how to accomplish both. 

·         How to proceed:  Who decides how fast/slow we go?  What Criteria to use to stop/start feeds? (I know that if I push it, he will end up in the hospital with infiltrates in his lungs.  If I stop them we can stay out of the hospital but aren’t exactly following GI recommendations or helping his liver.)  It’s a fine balance. 

·         So for now, I have decided to give him 24 hours off feeds.  And today at 4pm I will restart feeds.  But instead of formula, I will try water.  See if that triggers the secretion output.  (During the 24 hours off … there has been ZERO output from the Gtube again).  I guess I need to go super systematically.  And if he tolerates it, I will continue this.  If he does not tolerate it, I will stop it. 

·         Second opinion:  wondering if it’s a good thing to get a second opinion about what is going on?  Orlando just opened a motility clinic at Arnold Palmer.  They say they can manage complex cases.  Might be worth a shot. 

Update: 

12-3pm hooked Farrell bag to his gport and there was 0 output by the end of the 3 hours (while nothing was being fed).
I put a 60 cc syringe to his gport to drain stomach contents ... there was 0 output.
3pm start experiment of 5 ccs/hour of water in j port.
4pm 5 ccs output in Farrell bag, 5 ccs in.
5:30, Manny was retching so the water was stopped. There had been 12 cc's in total and about 25 out in the Farrell bag.
6pm, Manny was continuing to retch so I put a 60 cc syringe to his gport and drained the contents of his stomach. Approximately 15 more ccs there.
Retching stopped.
Experiment over.
Conclusion ... even water triggers a strange reaction.

 

Bottom line?  He’s fine if I don’t feed him. 

My pediatrician is submitting a referral to Orlando Motility Clinic.  Hopefully by her submitting it, we can get in sooner than if I tried to do it. 

In the meantime, I have also called the pulmonologist to see if we can get a more heavy duty oxygen concentrator.  The one we have now can only go up to 1 liter and he needed more last night.  It’s not a problem if we’re not feeding him, but if we continue to do feeds, we will need all the support at home we can get. 

 

Me?  I’m exhausted.  Mentally and physically fatigued.  Emotionally this is taking a lot of out me.  Why? Because it’s such gray area.  We’re navigating waters that even the Doctors/Specialists haven’t been down.  We’re all making it up as we go.  And when they make the judgment call, the responsibility for the outcome rests upon them.  But I am the one making these decisions so the responsibility lies with me. 

Like last night in the middle of the night during some of his choking episodes… he’s not breathing well. And I wonder if I should just keep doing what I’m doing? Or go to the ER? Or call 911?  All are decent answers.  No one would fault me for doing any of them.  But they are a judgment call.  And I am the one making them.  At 3 am.  And there’s a lot of terror involved. 

As I talked to my pediatrician about this today at length on the phone, she and I are on the same page.  We all want Manny to have the best life, the highest quality of life he can have for the longest he can have it.  We want him comfortable.  We want him enjoying life.  And we want to enjoy him.  We want to participate in events of life.  We want to spend as little time as possible in those moments of terror.  And based on that, I think it’s pretty clear … we do not need to do the surgery.  We do not need to keep experimenting on this baby.  If someone has a good plan to try, I’m all ears and eager to attempt it.  But I’m not keen on or willing to subject him to more bouts of torturous plans if I can at all avoid them. 

What does that look like?  Beats me.  But that’s the plan. 

 

If it's December, we must be in the Hospital

Life.  Over the past few weeks, I have written several blog entries.  I guess I wrote them for therapeutic purposes because I don’t feel I could/should share them.  Some of the topics have included:

Sandy Hook, gun control, Asperger’s and how my son has this disorder.
Then there are the topics of where do we go from here with Manny’s saga of breathing versus eating.
And the topics of general life. 

Suffice to say, I have experienced a lot of emotions and they’re all rolled into one.  At any moment I will be fine and then crying simultaneously. 

Today, Friday December 21, 2012 at 9:30am I was in the blood lab waiting for blood tests for Sam, Kaley and Jacob.  There was a harmless show on when there was a Special Report.  It was a National Moment of Silence.  One week ago at that moment was the Sandy Hook incident.  (You have to understand, I don’t watch the news.  I can’t.  My kids are all too young and vulnerable to hear the news on a regular basis.  It’s all about this murder, that rape, those break ins … if you watch that, you think there are only bad guys in the world.) I had no clue this was scheduled.  I was caught quite off guard. 

A bell rang out and then a picture of one of the 26 people was shown with their name and age.  About 6 seconds later, another was shown.  I didn’t get past the second name before I was about to be in a puddle of my own tears.  I tried not to fall apart in front of the kids.  And then I looked down the row.  They were moved too. 

As a mother, I just cannot comprehend.  I know that my child is sick.  I know live with the possibility of a negative outcome … often.  But these people sent their kids that day to first grade, kissed them and said, “See you later” never imagining the truth:  they wouldn’t. 

Meanwhile, Manny has been healthy!  We have stopped all feeds and life is great again.  No congestion, no desats, no breathing issues.  GREAT! 

Wednesday we had labs drawn.  Thursday we got the results.  They were HORRIBLE.  They were news of an impending issue. 

Specifically, for the past two weeks, his liver enzymes have been basically normal.  About 60-80.  And this week, one is almost 500 and the other almost 700.  Highest EVER. 

What does this mean?  One piece of info is good/great news.  When someone is on TPN longterm, a huge concern is liver damage/failure.  This is demonstrated partly due to elevated liver enzymes.  His were elevated so people assumed it was due to chronic TPN use.  BUT the fact that the past two weeks the numbers went to basically normal??  That PROVES TPN is not the culprit!!  If it were, the numbers would stay high and increase.  So this is great news.  His liver is not permanently damaged.  He is NOT in liver failure.  Yippee. 

But why the jump from 60 to 700 in a week?  Shows his body is fighting something.  He had no other symptoms. 

Thursday night all was fine until 3am and he was hot.  101.4 temp.  By 6am it was 102.8.  I knew right then and there we’d be in the hospital by night.  (sigh)

Meanwhile, remember how he had a blood transfusion a few weeks ago?  His hemoglobin should have gone up to about 11.5 or higher (his pattern).  But this time it hit 10.4 and then right back to 9.5.  We went to the Hematologist last week and discussed the issue.  We determined iron tests should be done.  So along with the other labs, we did those this Wednesday. 

Those results showed on Thursday that he is at very very low levels of iron.  He will need IV infusions. 

So tonight as I write this … we’re in the hospital again.  He is playing in the wheelchair.  He’s quite content here.  He would rather be home of course but we make it pleasant and he’s happy.  Me?  I’m having a hard time with this admission.  Why?  We had plans.  We were going to have a formal dinner at our house (decorations partly put up, food bought, etc.).  Today was the kids’ last day of school before winter break and we had plans.  Fun things planned.  It’s so very very hard to have to tell them that all those plans are on hold and I’m headed back to the hospital.  They handle it well considering … but they have all sacrificed so much.  They have given up MUCH MUCH MUCH.  There has been a price to pay. 

I won’t go into the details of the price that has had to be paid.  But it’s a lot.  The price has been high on all of us in different ways. 

And yet, the price is worth it at the same time.  Manny.  His life.  His quality of life.  He’s worth it. 

As I type this his fever has just hit almost 103 again.  But when Doc asked him how he’s doing he said, “I good.”  And everyone laughed.  He is truly one of the strongest people I know.  Which I find incredibly ironic. 

Kaley decided not to come with us this time.  Most of me is thrilled with that.  Don’t get me wrong.  I LOVE having her here.  My life is sooo much easier with her here.  And she can help tag team with me in helping keep Manny entertained.  But as a Mom, I want her to LIVE.  I want her to be a kid.  To have fun.  To be at home playing games and running around with her siblings. 

So how long will we be here?  Depends on several factors.  1) Must be fever free for 24 hours.  And currently he has a fever.  2) His liver enzymes need to be closer to his baseline of say 150’s.  3) He has to be 48 hours negative on his blood cultures and they were just taken tonight. 4) A viral panel was taken and depends on what that turns out as to if we think we can manage the symptoms at home or not.  So if all goes well, Monday is a possibility. 

But if there are any issues with any of the aforementioned factors, all bets are off. 

I’ve discovered that once I get here, I get into “Hospital Mode” and I find a way to go with the flow.  So for now, I will just ride it out. 

Stuck

Heavy hearted. 

I know it will all turn out ok.  Somehow it will.  In the end, we will see the beauty of the whole process.  God promises that ALL things work together for good.  And I believe that promise. 

In the middle of the process, however, there is often pain and agony.  There is a lot of uncertainty and how to proceed. 

I feel like I'm in a fork in the road and NEITHER trail is good.  I can't stand still.  I have to move on but one trail is full of misery x and the other trail is full of misery y.

An analogy ...

It's not like I have the choice between two good things ... would you like chocolate cake with or without ice cream?  Hmm ... either would be great!

It's not like I have a choice between one good thing and one bad thing... would you like chocolate cake or spoiled milk?  Hmm... a no-brainer!

It's like I have the choice between two horrible things ... would you like your dead rat fried with honey mustard or BBQ?  Hmmm... neither please.  Can't we go back to the chocolate cake?

So here's the reality check:

I know Manny is going to die.  Not today.  Hopefully not soon.  Hopefully after a long, long, long life.  But every human will die at some point. 

I also believe that God knows the NUMBER of our days.  (Job 14:5).   So it makes me ponder ... is there anything I can do to extend or shorten those days?  Is there a way I can make a great decision (based on Godly wisdom and discernment) that will cause Manny to live longer?  Versus making a poor decision that would be life shortening?  This theological debate is not my point but it's something I consider.

Maybe the decision/outcome has already been made and there really IS no struggle, only an internal wrestling.  An illusion of control. 

And if that's the case, how do I get past the internal wrestling faster?  How do I give up illusion of control sooner?  And why does the decision seem soooo darn real and life altering?

I know, heavy topic.  With no real answer. 

So what spurred the topic this time? 

Manny is in the hospital ... yet again.  That's right.  We got here on Thanksgiving, went home on Saturday.  Got back Tuesday.  Respiratory distress. 

What's going on?  he's not tolerating the feeds.  Plain and simple. 

So we start the whole discussion all over again.  Is it the formula? the elements thereof? the rate? the volume?

And the real question ... is there ever going to be some "magic combo" of circumstances where he can tolerate feeds?  If so, it's worth pursuing!  We must push for it and press through all the issues to get there.  The benefits are so worth it ... reducing TPN, which in turn lowers his risk for liver failure and central line infections, etc.  We have even (as a family) had this as our recent prayer request.  That he can eat.  So there's an element of faith that comes into play. 

But what if he can't?  What if he will never tolerate it?  What if I make him worse (like compromise his lung function)?  And what if I just need to say ENOUGH and let him ride out his days on TPN? And when do I make that call? How do I know when to say ENOUGH? 

This is the simple version of the impossible decision I have to make.  I knew it.  I knew yesterday this is where we were.  I even talked to hubby about it.  I prayed about it. 

I feel completely STUCK.  I'm at that proverbial crossroads.  Can't stand still.  Don't feel either decision is "right".  And yet, I am his Mama.  No one else will make this decision for me!  No one else possibly could. 

He had a rough night last night.  Why?  They tried to push the feeds.  They didn't remove them soon enough and now he has gunk in his lungs.  There's a spot on his lung that looks like it could be from aspirating the formula.  Could be the start of a pneumonia.  Or it could be nothing.  But I know he had troubles breathing.  He choked often.  He's got a 100.3 temp.  He's grumpy.  All signs that this is headed south.  And I'm kicking myself that I couldn't convince someone to hear me sooner.  He is suffering because I didn't advocate loudly enough. 

After a long, restless night of him having troubles breathing, I'm tired this morning.  Emotionally tired.  Drained.  Incapacitated.  STUCK. 

This morning, Doc said he wants to keep us here another night for observation.  We both know this could be a thing where Manny gets immediately better or he could get worse.  It's a coin toss.  So better safe than sorry at this point.  I'm fine being here.  But I told him I was losing fight.  Not the fight for what is best for Manny.  Not losing the fight about his quality of life.  But I'm losing fight of, "I want this" or "We need to try x".  I'm out of ideas.  The reality of the decision in his life is weighing heavily on my mind. 

At noon, the GI came in.  She told me what I already knew. I just have to decide which I want to pursue.  Forward with feeds even with the respiratory risks.  Or resolve to TPN alone. 

Everyone understands the impossible decision I am faced with.  They all feel horribly for me.  They see my struggle with this.  

So as of this exact moment in time, I feel paralyzed.  No way to stay still.  No way to move forward.  No clear direction. 

I KNOW that in the future, I'll be writing the follow up blog that says we tried X or we decided Y and all worked out. 

It's just in THIS moment, I am stuck. 

Thankful for ...

As I went to type this right now, I noticed cyberspace ate yet another post.  I'll track it down and repost it when I can but for now, wanted to catch you all up on the latest. 

His blood got so low that he needed the transfusion.  Then his liver enzymes went through the roof.  Finally discharged on Nov 16.  We drove home and as we drove up, Dan was arriving from picking up the kids from school.  I literally had not stepped out of the van when Sam (11) comes to my door and announces he is sick, that he'd gotten sick during the day.  Cough, fever, etc.  And I told him I love him but that he needed to stay away from Manny. 

We did all the normal de-bugging and germicides and etc. 

Luke (9) ended up getting a version of it.  He has asthma and that was triggered quite severely.  I honestly thought I'd end up in the hospital with him.  But we were finally able to get that under control. 

Meanwhile, hoping the rest didn't get it. 

As I write this, it's Nov 23 and Dan, Sam and Luke were the only ones who got it ... well ... and Manny. 

By Tuesday I was getting concerned.  Tuesday night he struggled with breathing a bit.  By Wednesday he had a 101 plus fever (you know, the number by which we are supposed to be admitted).  So I decided to go ahead and cook the Thanksgiving meal ... just in case. 

Wednesday night was HORRIBLE.  Fever, breathing issues.  He was going down into the low 80s for pulse ox.  (Should be 100, never below 93 for him).  We put oxygen on him and that helped for a while but then it wasn't enough.  By morning I thought we'd head straight for the hospital.  But to my delight, he was able to cough some up and it helped.  Fever went down.  He was hanging in there. 

So we did all our lovely Thanksgiving traditions and had a beautiful time.  We had family over.  Lots of food.  You know, the regular.  By the end of the meal, Manny was not looking good at all.  He was slumping over.  Fever back.  Breathing weird.  Not good.  So I held him and he went to sleep.  (He never naps.) 

During the nap, he was struggling to breathe.  His pulse ox was 90 and his respiration rate was above 50.  It was clear he was going to need help.  And if the nap was any indication of how the night would be, we needed to go to the hospital.  So I called Doc for a room. 

By the time we got here, Manny had already had a 3 hour nap.  By then he was breathing pretty good.  He'd had some really good coughs and was able to get some of the congestion up. 

To my delight but shock, he did great breathing at night!  NO troubles.  At this point I was almost wishing I hadn't come in.  Then again, what if he would have been worse at home?  We have all sorts of things that he could be having an allergic reaction to.  We do our best to clean and even use an ozonator and other alternative options.  But we do have 2 cats, a dog, etc etc.  He'd been tested a while back and it showed he was not allergic but I know allergies can change. 

Anyway, by this morning, I was very hopeful we won't be here long and that maybe he is on the mend.

His chest xray isn't something scary ... then again, I was told xrays "lag" behind clinical findings so it's a bit early to see something. 

His labs are "off" a bit.  Like his white blood cells were 4 on Monday and now 12.  So definitely fighting something.  His liver enzymes are elevated quite high again.  And so is his CRP.  So all showing he is fighting "something". 



Meanwhile, he still has this cough and runny nose and sneezes.  Could be a simple "cold".  But for him, this is never simple. 

He was sounding good this morning until ... his breathing treatment.  He coughed up some strange nastiness and now his chest sounds all rattly.  His pulse ox starts to drop.  Then he'll cough and it comes back up.  So definitely something blocking his abilities to breathe right.

We're at that point where he could easily still beat this and get ahead of it OR it could kick his butt easily.  He could truly teeter either way. 

1pm Doc came by ... right now we are not making going to make any changes to his treatment plan.  We're hangin' in there so don't rock the apple cart as they say. We were talking about how he does so much better sleeping upright like in the hospital bed than the regular bed at home (even though I prop the heck out of him) and Doc asked why I don't have one.  Uh ... never asked for one I guess.  So he said he will work on that for us!  Cool. I think I will like to have one for him. I already have a twin sized bed there so I know it will fit. 

1:15  GI came by ... going to make some changes to the TPN.  Now that Manny is on the tube feeds 24 hours a day he is up to 360 ccs per day and that means we can reduce the time he is on TPN.  Theoretically, it can help save the liver to reduce the TPN.  He is currently on TPN for 20 hours a day.  He will go to 18 hours per day.  If his blood sugar is stabilized, then he will go to 16.  That would be amazing!  We will see.

1:30 as I type this, Manny is sitting in his wheelchair watching his favorite ... Little Einsteins DVD that I brought.  His pulse ox keeps dropping again.  He will then cough and it goes back up.  It had been stable for a few hours at 98-100. 

.......................

I am thankful for so many things.  By listing them, however, it makes them all seem "trite".  I really don't think it possible to make a whole list.  We could spend every moment of every day listing and still not reach the end. 

So rather, I think Thanksgiving is a mindset, a way of life.  It's a way of being.  A way of thinking.  A way we live our lives. 

But in THIS moment ... I'm thankful for more time with Manny.  Afterall, 2 years ago we were told our time was up.  I'm thankful there are medicines and machines and people trained to use them.  I'm thankful for people who care about him and want his well being.  I'm thankful for the ability to write down my thoughts and share them around the world and people worldwide know about Manny and pray for him. 

Life is hard.  Some days are much much harder than others.  And some days are much brighter than others.  There are miracles every day.  Some we see and know about.  Others we miss, but it doesn't make them any less valid or special. 

Life is also beautiful.  But we can also find beauty anywhere, even in the pain.  Even in the scars.  Maybe especially because of the scars. 

So during this season of reflection on being thankful, don't forget to be thankful for the hard stuff too.  Be thankful you don't endure it alone.  Be thankful God is holding your hand in the bleakest hours.  You don't have to be thankful for the pain, but I do think we are supposed to be thankful for the process. 

A long time ago, God gave me a word.  It seemed simple.  But even 8 years later, I'm still learning what the phrase means.  "You have a purpose for my life and You are shaping me, Lord."  It's a line to a song I wrote. And it helps answer a LOT of problems/questions.  God has a specific purpose for every human being's life.  AND He needs us a very specific shape.    Because of this phrase, I can more easily go through even the hard times ... knowing there is a purpose for it!  And in doing so, I am becoming the shape God needs me to be. 

Painful?  Yes.  But do-able.