Oct 30, 2013

Get Well NOW

* Disclaimer ... not my normal type of post. 

Every night, Dan and Manny spend Daddy/son time together in Dan’s office.  They play toys and watch a little TV.  Last night, I happened to walk in to use the fax machine and Kipper was on.  I wasn’t listening attentively but then suddenly a phrase jumped out and struck me. 
Kipper was reading a “Get well” card.  He said, “I don’t want to get well soon.  I want to get well NOW.”

And it hit me!  Isn’t that the truth? Don’t we all?

No one wants to suffer for hours, days or longer when we could be feeling better instantly.  And I wondered why we have ever used that phrase of “Get well soon”? 
And the part that struck me most was regarding faith and prayer.  I think a lot of Christians actually pray like that.  They have little to no faith in a healing God.  They pray prayers like, “I hope you get well.” Or “If this be God’s will that you get better”.  Or they say, “I’ll pray for you” but then never do.  They’re praying for the “what if God doesn’t answer” plan. 

 What if we stuck our faith out there?  What if we prayed like we actually BELIEVED the person could be healed?  Would more people actually be healed?  Even some “Faith healers” could do better in this department in my opinion.   They often say the right words but then almost put a disclaimer on it just in case the miracle doesn’t happen.  Does God need an “Out?”

I don’t think so.  I truly believe we need to stick our faith out there more.  Hope BIG.  Pray BIG.  Afterall, we serve a HUGE God.  What if we gave Him room to operate in our lives on a Grander scale?

And at the same time,  how about James 2: 14-17? 
Paraphrased … What good is it if you say you have faith but do nothing to help.  What if you see a person without clothes and food and all you say to them is, “I hope you find some clothes and food” and do nothing about their physical needs , what good is it? Faith without action is worthless. 

As you can imagine, with a family like mine, I spend a lot of time thinking about healing, faith and actions.  Many people seem to find that right “balance” in regards to our family.   But honestly, many do not. 

I think most people just don’t know what to say.  How to say it.  Or what to do.  I think it’s not a lack of interest, it’s a lack of understanding.   (And I’m not saying people need to help us.  I’m not asking for help.  I’m talking about the ones who actually are TRYING to help us or pray for us. Unsolicited.)

I talked to someone the other day who said quite honestly to me that she wished she knew what to say or do for me but she couldn’t even spend the energy THINKING about our family.  Why? She has two healthy kids and is overwhelmed so her brain fritzes out even considering thinking about what my family dynamic would be like. 

I get that on some level.  But on another level, I think it’s a cop out.  I didn’t ask this person for help.  I wasn’t complaining to her.  I didn’t act overwhelmed around her.  She just came by the house to pick something up and I guess she felt guilty or something. 

And the whole conversation seemed to me very, “I hope you get some clothes and food”.   It’s as if the conversation had some benefit to HER because it certainly didn’t benefit me in any way.  But I kept wondering what she got out of this?  Why did she even bring it up?  What was the purpose of mentioning it at all?  I’m still at a loss actually. 

 But back to Kipper.  Manny’s health is as stable as he’s ever been in most ways.  His breathing is steady.  He’s stronger.  He’s been in the hospital very little.  Mostly good news.  But there is one area that seems to be declining (not ready to share yet).  And it’s troublesome.  It’s one of those that if God doesn’t intervene in a powerful, miraculous way, this story doesn’t  go well. 

This morning, for example, he woke up crying uncontrollably.  That’s new.  It’s not like him at all.  He’s normally a chipper thing … even when in pain or sick.  But this new thing is painful and progressive.  While he’s awake he’s in control of his emotions.  But when he’s in the twilight between awake and asleep, his emotions sometimes take over and it overwhelms him. 

I fight so hard for his quality of life.  I fight for pain control.  I fight for peace of mind.  And right now, it seems a losing battle. 

So imagine I said to him that I wished for him, “Get well soon”.  Seems cold and distant.  Instead, I would rather say, “Get well NOW”.   If it were in YOUR power to do that, wouldn’t you do that??  Wouldn’t you do anything in your power to get the job done NOW? (Yes, I know that timing is everything and not everything can get an instant "NOW" answer.)

My points?

1)      When someone is in need of something and it’s in your power to do something physically for them, do it. 

2)      When someone is in need of prayer, don’t just say you will pray, but actually DO it.  In fact, don’t wait until you get home in private.  Grab their hand and start praying right then and there.  If it’s public, you can do it quickly and quietly if you need.  But it is (usually) much more powerful to the person to actually HEAR the prayer.  Feel free to say you’ll continue to pray about them and the situation.  If they’re on the phone, pray then.  If it’s via email, don’t just tell them you’ll pray, type out a prayer and send it to them.  In other words … be INSTANT in prayer. 

3)      When you pray, do it with faith.  Do it like you are praying to a God who is kind and compassionate and capable.  Lay it at HIS feet. 

4)      Don’t be afraid of people who have a LOT on their plates.  They are just regular people who are putting one foot in front of the other.  Their load may be larger than yours but they don’t need extra burdens like judgmental statements or “you’ve got your hands full” kind of observations.  They need encouragement, a listening ear, acts of kindness, etc. 

5)      Don’t compare yourself with others.  It’s never wise.  Afterall, we can only know the outside tip of the iceberg about what others are going through.  We never know what it’s like to be walking in someone else’s shoes.  And it’s rarely like we would imagine. 

6)      Be kind at all times.  You truly never know what is going on in someone’s life.  And everyone is always dealing with something.  In fact, it’s probably best to assume they are and treat everyone with extra kindness than you think they deserve.  (Like someone cuts you off in traffic?  Instead of turning all type A and road-rage-aholic, perhaps you could give them the benefit of the doubt?  What if you knew they were  in a hurry because they just got word their daughter was in a car accident and they were trying to get to the hospital?  Would that change how you felt about them?

7)      Have the attitude of “Get well NOW”.  See if that doesn’t shift your thinking.






Oct 14, 2013

2 year anniversary

Two years.  TWO YEARS for what what supposed to be “temporary” and “Likely about 3 weeks.”

I had no clue how much my life would change on October 13, 2011.  The vastness of the implications of that day are surreal.  

Here’s a quick synopsis of the events leading up to that day.  

Manny was born and had troubles eating from birth.  It got severe by 8 months and he was placed for adoption and hospitalized.  It was then they did a swallow study and gave him a Gtube and a Nissen Fundoplication.  The Gtube is because he was aspirating the formula (means some was going down his lungs and not his stomach.)  The Nissen Fundoplication (also known as a “Nissen” or a “Fundo”) was because he was having some severe retching and that was ending up in his throat and also into his lungs from there.  Aspiration pneumonia is not pretty, especially for a child with weak lungs.  

We picked Manny up from the hospital the day he was being discharged from these procedures.  It happened to be the day he turned 9 months old.  

From the very beginning, he was having troubles with what I called “retching”.  The episodes were scary. He was losing his breath, he’d gag and turn bright red, eyes would water and he looked scared.  They would last for hours sometimes.  And he would often crash after for hours.  I got numerous of these on video.  Doctors didn’t seem concerned or perhaps they just didn’t know what to do.  But I tucked this away in my heart.  

Over time, the episodes became more severe and pronounced.  A test was done and showed his stomach was not emptying at all.  50% of stomach contents should leave the stomach in this hour study and less than 1% left.  We thought we had the solution.  We did a GJ tube.  So rather than food going directly into his stomach, it would go into the bowel.  

This never worked.  There were problems from the start.  The pressure in the bowel would send food and even the tube in the wrong direction.  His episodes of retching became worse.  

At one point, it was so dangerous, I thought I’d end up killing him just by feeding him.  Local doctors seemed stumped so we were referred to a different city for treatment. They initially thought is was a malfunctioning jtube.  Then they thought maybe I was making the whole thing up or even worse, making him sick.  

I was told numerous times, “Anatomically, that’s not possible.”  They were saying I was lying.  I was about to be discharged.  Then the head of the GI department was consulted and something in my story resonated with him. He took the case.  He immediately dismissed the rest of the team that had not listened to me.  

We started fresh.  I told him EXACTLY what Manny would.  I showed records. I showed videos.  I had them try the experiments themselves.  They saw what I was talking about.  They didn’t understand it but they saw it.  

He was very, very ill whenever fed.  We tried lots of different things ... speed, amount, type of formula, etc.  Everything made him do these episodes.  Some just did it worse than others.  

The only thing that didn’t cause troubles was pedialyte.  Problem is ... it’s only about 100 calories a day at the rate he could tolerate.  He wasn’t getting dehydrated this way but he was getting no nutrition and was losing weight fast.  

Eventually it became clear ... something had to be done.  Meanwhile I was researching and discovered that Total Parenteral Nutrition or TPN would have to be started. 

I remember the day I felt like this was inevitable. It was a cloudy, gloomy day.  I sat in our hospital room and just cried.  It was a very somber day.  

Why?  Because TPN is very difficult on the body.  While some people can live a lifetime on it with few to no complications, it’s not always that easy.  I knew that this decision might be one that was shortening his life. It was a heavy decision.  

When I asked if we were to TPN yet, she assured me we weren’t there yet and they would keep trying.  But I knew it was just a matter of time.  

Sure enough, on October 13, 2011, the doctors determined he had lost too much weight and was too weak to continue on with the experimental feeding.  We would have to start TPN “Temporarily.”  As the head doctor said, “To get him out of nutritional debt.  Then we can start again.”  

What we all looked like back then.  

Well ... two years later and we are still on TPN.  In fact, we have yet to have anyone even give a possible solution to weaning him off.  

I still have hope this isn’t lifetime, but it sure looks like it will be without divine intervention.  (Thankfully I believe in that though!)

I call TPN the biggest miracle that I hate.  

It’s certainly a double edged sword. 

On the one hand, it’s very hard on his body.  Within 3 months of being on it, he lost his gallbladder and he barely survived the event.  His kidneys are now damaged.  His liver is starting to fail.  And that’s not to even talk about all the crazy Vascular Access emergencies like broken lines, sepsis, blocked lines, etc.  Those events have been the most life altering events of all!  

But at the same time, TPN has given us freedom from the heartwrenching episodes of retching.  He’s stopped looking at me with those eyes and begging me to stop choking him.  His heart rate no longer goes close to 300. He never turns blue from lack of oxygen.  He no longer has hour long sleeps where he has just “passed out”.  He’s stopped “drowning”. (The formula would go into his lungs and he couldn’t breathe.)  

I had a very frank discussion with our new GI.  I’d rather him die of liver failure than drowning. And while I say that very bluntly and very matter of fact, it was a decision that I came to after much prayer and many tears. 

So as I reflect back on these past two years, I cannot believe the incredible ups and downs we’ve endured.  They have been the 2 hardest years of my life ... BY FAR.  

And yet, I still have Manny.  

Happy Anniversary buddy. I love you with all my heart.  I’ll never stop fighting for you.  

Oct 9, 2013

Destination Nashville

Before I share the next adventure, Just for fun, How about a picture of each of the kids?
Haven't they grown??  

Jacob 15, Kaley 13, Sam 12
Luke 10, Zoe 8 and Manny 4


Destination Nashville ... 

Manny, Kaley, Zoe, my friend Ann and I went on a road trip.  Nashville was the destination.  We decided we would just drive until we needed to stop.  Our goal was north of Atlanta.  Once we got there, we decided we’d head on towards Chattanooga.  

By the time we got there, Manny was having troubles with his central line.  What kind of trouble you ask?  

OK you know how he is on TPN for 20 hours and off for 4?  He can’t go much longer than that or his blood sugars will crash.  Well, it was at the end of the 4 hours off and the line was “blocked”. It just wouldn’t flush at all.  Like cement.  

So decisions had to be made.  FAST.  We could stay at a hospital in Chattanooga ... but I needed to be in Nashville.  The last time this happened with his line, it was 3 days before we could use it again.  I didn’t want him admitted in a different city.   

Nashville was 2 hours away.  We decided to push it.  Go!  Drive fast but not so fast we get a ticket.  At least this way if he’s admitted, we will be in the city where I needed to be.  

During the next two hours, I was praying, asking others to pray.  I was troubleshooting all the things I knew to do.  I even contacted the Vascular Access team and asked if I’d missed any steps.  They said we needed to get to the ER and recommended Vanderbilt Children’s.  

We got to the ER and the intake person didn’t even understand what a Central Line was.  She just wrote “feeding tube clogged”.  Well ... let’s just say THAT would not be a life threatening emergency.  By this time, I figured Manny’s sugars would be starting to drop ... but they weren’t yet.  (Shocking).  

When we saw the triage nurse, he understood the severity of our situation and got us right back to the nurse.  She got us right back to the “Critical Area” and gave us the Charge nurse.  So yes, they got it. 

He's not even bothered when he's in a hospital he doesn't know.  Wow. 

I also loved that the staff gave me the respect to make the calls about how we proceeded.  For example, I knew that he would need an IV of sugar if his blood sugars started to crash. That would mean a peripheral IV stick (not as easy as that sounds).  But if they could unclog the line, we could avoid all that.  They left it to me to make the call.  So I held off.  

They asked why I was there in Nashville. I was there to be a keynote speaker for the Vascular Access National Convention.  I was in town to talk about stuff ... like this!  Ironic, no? 

Well, the prayers worked.  It was only a few hours and it worked!  It was about midnight by then and we still had no hotel but at least we were all in the right city and not admitted!  His sugars never crashed. That’s amazing all in itself.  

I’ll write a whole blog post about the Nashville Conference soon.  I’m waiting for a few links before I can post that.  Very cool.  

We were super duper careful with his line while in Nashville and the trip home.  We got home on a Monday.  Tuesday I took him to our local ER to get the line repaired. I laughed because I’ve got to be one of the only people who actually “plan” the ER visits.  Sounds crazy, huh?  

OK well, he gets off his TPN around 1pm.  He will be off for 4 hours.  The repair for the central line takes 4 hours of dry time.  See where I am going with this?  If I time it perfectly, he won’t have to have a peripheral IV.  But if we don’t plan this, it could end up being an admission and be lots of hours of poking for an IV site needlessly.  

So I got to the ER about noon.  Got through the check in process and triage.  By the time we were settled in a room and the vascular access team could be there, his TPN was ending.  

The repair went flawlessly.  We were sent home.  And just like clock work, I hooked him up.  All ER visits should be this calm! LOL  

This was the 4th repair on this line.  As I write this, however, his line is 20 months old.  It’s truly amazing how long it’s lasted without a central line infection.  I still celebrate the 7th of every month.  I am sure I’m not the only one who celebrates the “birthday” of a central line!  
Right before the Repair. Doesn't he look too comfortable in a hospital environment? 

This is a picture of him during a central line repair. You might have some questions about the line repair. The white piece coming out of his chest is his broviac central line. There was a part on it that got blocked and was causing it to balloon out. This means it would break any time.  

The IV team cuts the line and basically glues a new piece on the end. It's held together by silicon glue. 4 hours dry time. Then voila! Good as new.
 But trust me, when they cut that line, it always sucks the air right out of the room.  If for some reason they can't get it repaired, he'd need surgery and a whole new line.

This picture is right after the procedure but before she put the dressing (bandage type thing) over it to keep it sterile.

Like I said, this was the 4th repair on his line. Why so many? The thing keeping him infection free is Ethanol lock therapy but it's hard on the line. It's a trade off and worth the issues to me! 20 months and counting!