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. 

Anemia and beyond

Anemia … the continuing saga. 

I will try to summarize as succinctly as possible this quite complex medical issue Manny has going. 

Last October he went on TPN.  December he got very ill, went into septic shock and had to have his first blood transfusions.  February he got very ill with the gallbladder that died and was leaking and had to have his next set of transfusions.

In May his iron levels we so low they ended up giving him another set of transfusions along with his first set of IV iron. 

So if you’re doing the math, that’s every 2-3 months that he’s needing it. 

October of this year his hemoglobin and all the red blood cells are starting to tank again.  He’s not symptomatic (yet) but we’re close to where he became symptomatic in May.  Rather than waiting until he crashes like they did in May, I asked if we could do a preemptive strike.  They gave him two days of IV iron on Thursday and Friday.  (It's the first time we've given iron only and not a transfusion too.  A good experiment to see

So … Monday iron low.
Thursday, Friday … IV iron given
Monday … iron even lower than last week. 

Now the mystery part comes in.  What the heck is going on? 

Possibilities include:  Not enough iron given.  Not the right type of iron given. He may need the actual blood components and not just the iron.  He may not have iron deficiency but instead something like hemolytic anemia.  Or he might have iron deficiency anemia PLUS something else.  He also might have something called Anemia of Chronic Diseases on top of other conditions. 

Bottom line:  This isn’t working and I am glad I have a Hematologist on the case!  We need to get this straightened out soon!  Last time he was this low … he had about 1 week before he crashed. 

Meanwhile, his White Blood Cells (infection fighters) are very very low.  In other words “Sitting Duck”. 

Now at the exact same moment in time, I have several kids who are sick in the house.  We just keep getting hit with one thing after another. I even hired someone to come clean/sterilize the germs!  And I have now bought stock in Lysol wipes it seems! 

Dan got what we thought was allergies 2 weeks ago and then it settled in his lungs.  It was almost a week and a half before any one else had symptoms so we were hopeful.  Then Sam.  Luke.  Kaley.  Same order of events … sore throat, then low grade fever followed by a horrible cough that’s deep in the chest. 

So imagine my horror when yesterday Manny said, “Ow, my neck!”  I asked him to point to where it hurt and he pointed to his throat!  Noooo!  And tonight?  Temp is 100.4

According to our old criteria we’d already have to go in.  But I got a bit of leeway from Doc.  He and I agreed on a new set of rules.  We do an automatic admission to the hospital if:  100.4 for 12 hours or more; if he’s acting sick and has 100.4 even once; or one time of 101 or above. 

So tonight I took his temp and it’s 100.4.  If it goes up over night we have to go in.  If it’s still up in the morning, I will call for a room. 

Meanwhile, as I did his bedtime routine, I felt his neck and there are swollen lymph nodes.  I looked in the back of the throat and it’s definitely swollen and red.  Nothing that looks like strep … but it could be.  The back of the throat is also pooling with saliva like he’s not wanting to swallow.  Having to do lots of extra suctioning.  So … either way we will be headed to either the Primary in the morning or the hospital (depending on the temperature). 

And finally for the news of the day … we went to the GI today.  I was very prepared with all sorts of labs, charts, summaries, questions, etc. All neatly organized and typed out.  I was able to present the history, current situation and concerns/questions very thoroughly to the ARNP and she gave the summary version to the Doctor.  (I am happy with that system as the ARNPs are the main ones we end up dealing with anyway.)

Bottom line … we will start on a new formula (one we haven’t tried before) at 10cc’s per hour.  We will return in 2 weeks with the verdict.  No adjusting it higher/faster until then but we are allowed to stop it if it doesn’t go well.  So … I’m good with the plan. 

 

Dressing Changes

Last week, I did a post about TPN and the supplies and what goes into connecting and disconnecting Manny daily. 

Well another activity I do is Dressing Changes.  This is done weekly typically unless it's needed to be done more frequently. 

First thing you need to know is ... this is considered a "Sterile Procedure".  We are exposing Manny's central line to the air and the elements so it's critical this is done carefully and quickly, exposing him to as few germs as possible.  You'll all remember how horrible a line infection was! 

Before I even bring Manny into the room, I lay out all the supplies.  I am careful not to touch anything that will be used for the sterile procedure, laying all the supplies out on the sterile cloth.


Above, what you can see are the supplies I need for this procedure.  Upper right is a mask.  Manny and I both get one.  Right center is a blue cap.  Bottom right are sterile gloves.  Bottom left Iodine (3).  Upper left is alcohol.  Small circle silver disk in middle (it's upside down but it's white on one side and silver on the other).  Two semi circles in the middle are tape like IV 3000. 

Once all the supplies are set out, I go get Manny and lay him down on a changing table.  I take off his shirt.  We both put on our masks.  He calls, "We going to be the doctor?"  (Every time he says it the same way.  These are our "doctor masks".) 



Take off his old dressings.  This picture shows it half way on and half way off. 



This skin is completely covered 24 hours a day, 7 days a week and the only exposure it gets is during the dressing changes.  He says the skin itches.  I can imagine it does!  So the picture above is showing me holding an Iodine swab.  I make sure I do a bit of "scrubbing".  Not because it's dirty, but because it itches.  He usually says, "Ooooo, that feels SOOO good!" So I scrub longer than is necessary. 

There are three iodine swabs in the pack and I use all three.  Start from the center and then work outwards from there.  The idea is to sterilize the area to kill off any bacteria.  Now Iodine is what was used for decades and was the go to product forever!  But recently, a new product has made its way into circulation that is more effective.  It last longer and kills better.  That is ChloroHexadine Gluconate or CHG. 

Turns out Manny is very allergic to CHG.  How do I know?  First, remember all the horrible skin issues he had?  We didn't know what was causing them?  I did a systematic approach to find out the culprit and voila! CHG.  Again, how do I know?  I drew a straight line with the different products and there was a bright red line of bumps where I had placed the CHG.  Since we stopped using it, not one skin allergy! 

Oh, and I was put in contact with a group.  I find this fascinating.  They manufacture broviacs and are starting to "lace" them with CHG.  Why? Because at the time of the insertion is when there is the highest risk of infection.  So the CHG would help prevent infections for up to 30 days upon insertion.  (That would have helped a lot as Manny's first Broviac had to be removed after 3 weeks!)  But a friend worked for this company and she knew of Manny's allergy and asked what do they do for the kids with a CHG allergy? Well, turns out they're rare.  They would like to develop a bedside test to see if a kid is CHG allergic before inserting the broviac.  But since the allergies are rare, how do they obtain blood samples? 

So ... last week, I got blood samples and overnighted them to this company!  They are going to do testing and send the results.  And Manny's blood could actually help other kids. 

Anyway ... back to to the procedure. 

After doing three swabs of iodine and pausing to let them dry in between because "Dry time is kill time" I was taught", we then remove the iodine with alcohol swabs.  This stings for a second Manny says but it's not that bad. 

Next is the little circle.  Normally it's a white circle that's laced with CHG.  But because of his allergy, we use Silver Disks instead. 



They have a slit on one side so it's easy to slip right over the line. 

Next comes the dressing.  It's like a clear bandage.  We use something called IV 3000 which is a bit breathable.  It's also clear that way we can see if there are any issues going on below the bandage.  (Leaking, blood, discharge, redness, etc.) 



There are a million ways to do the dressing.  In this one, I was being creative.  Every time I try to adjust the pressure of the line as well as the placement of the dressing to give the skin some time to breathe.  Last time I put them north and south so this time it's more east and west.  And because there are now two repairs the line is a tiny bit longer and it doesn't bend in every direction, I sometimes have to get creative in the way it's looped.  If you see the silver disk, the area right around that is what's critical and must be completely closed up.  So that's all under one solid bandage.  The "tape" at the top of that is because I've discovered Manny likes to pick at the dressing so I have learned to secure it there. 

The little loopy thing on the right chest is a tension loop.  That is so in case his line gets pulled, the tension loop will first move and the part that is in the chest won't budge. And more "tape" on his right chest ... again, that's for wandering fingers. Then in the center of the chest is more "tape" to anchor the whole thing so it won't get tugged.  And as you can see, Manny no longer has the mask on in this picture because we were done and he likes that off ASAP. 

Now other people do this differently based on what allergies/needs the kids have.  Some kids get skin prep or might be allergic to the dressings, etc.  But so far, this is what is keeping Manny's skin looking healthy and clear. 

Finally, we have to change out the cap.  In the picture above, you can see a little orange tip. That's a swap cap.  It's laced with alcohol and goes on daily for the 4 hours Manny is not hooked up to his TPN.  There is a white cap right above that which gets changed weekly during the dressing changes.  (Sometimes it's blue like the one in the very first picture ... still in the package.  There are just different types.)  The white cap is connected to the next part up called the Hub.  These are cleaned thoroughly and a new cap is put on. 

The whole process?  Even with us taking extra time to scratch a lot and to let things dry, the whole process takes less than 10 minutes.  I've got it down to a science! Practice.  Lots of practice. 

So there you have it.  Now you're all certified in Dressing Changes.  Like I said, this is typically only done once a week unless it gets pulled or wet or starts to come off.  But for Manny, it's rare to need it more than once a week.  (Well, back in the days before we knew about the CHG allergy, he needed daily changes.) 

What mundane thing from my life should I share with you next? Oh, I know, I should show you the charts and tables I have of record keeping for Manny's medical related things.  :)

Outpatient? oh no, please stay

6:40, leave for the hospital.  Except for the major major wreck blocking one of the main roads to the hospital, it was uneventful. 

9am the anesthesiologist does all of their regular questions ... I've discovered I've become quite numb about all of these 'risks'.  THEY FREAK.OUT every time and I just can't live in that moment.  BTDT too many times.  So I'm probably perceived as quite cold about it but the truth is ... I know it's a risk.  I know what could happen.  I am aware more than they could ever know.  But I also know that he's been sedated numerous times and so far, all has gone well.  I have to live in THAT moment. 



9:11 they take him back.  There's always that moment I discover I have stopped breathing.  It's usually as he is wheeled away from me.  Thankfully Kaley is with me and I'm immediately forced to deal with her and her needs like breakfast (otherwise I know i wouldn't eat). 

10:11 I do a time check and realize he is not back yet. 

10:25 I see him wheeled past me to the recovery room.  I breathe again.

10:32 I am allowed to go in the room with him.  He's still asleep from the general anesthesia but he didn't have to be intubated (yay).  Procedure went well.  Uneventful.  Even still, the anesthesiologist called the pulmonologist and they decided a night in the hospital for observation would be the safest for him.  Uh ... ok.  Overkill.  I think so.  Irony is that this is the first time I didn't grab my overnight bag.  Guess I will do without anything for the night.  Probably nothing I can't do without for one night. 

11:30 We are still in the day hospital recovery room.  Now we're just waiting for a room. 

This afternoon, we were supposed to go to see the Hematologist to address the anemia.  But now?  I guess they'll have to come to us.  That should be interesting to see what they want to do since we're admitted anyway. 

Last time he got a GJ placed, he started retching within an hour or two of it being placed. I know that makes no sense.  But what is new when it comes to Manny?  There was no food in it, just the tube being there and it caused troubles.  That's what led me to believe it was something like the Visceral Hypersensitivity.  And sure enough, that was confirmed with Boston's results. 

I was leary about that happening again. But we're an hour in and nothing so far. 

I don't know what the plan is about starting to use the GJ either.  We'll see.  Should be an interesting ride.  As Doc says, "Put on your seatbelt!" I am scheduled to see the GI outpatient on Tuesday.  I guess we'll address it all then. 

12 got upstairs and I really don't think we need to be here for the reason they have us here ... but maybe he'll need to be here for some strange reason later and we already have a jumpstart.  That has happened before.  Hope not. 

12-6 Hanging out chillin'.  Just waiting.  Can't really leave the room and he's not sick so it's just like hangin out with no way to do housework.  Cartaya offered to let us go until he found out about the little fever from last night.  Then he gave me the look for not bringing him in last night.  Then I told him about the anemia and he was convinced we needed to be here anyway. 

6pm, Hematologist came in.  She thinks this might "just" be iron deficiency but is not 100% positive due to a few of the strange variables.  Not a clear picture of anything.  We discussed that she could do a bone marrow study in the future if we can't stay ahead of the anemia.  I told her that I was certainly not pushing for that to be done and would only do it if necessary and we crossed that bridge. 

So for now, the plan is to have IV iron tonight and one tomorrow before we are discharged.  Then I will set an appointment to see them again in 2-4 weeks and get more blood tests then.  This will be the first time he's receiving iron without a transfusion and that will really be able to help differentiate if this is JUST iron deficiency or if it's "more".  So the Iron in isolation is going to be an interesting experiment that we haven't tried yet.  (Before, we've always waited until he crashed before we did anything about the anemia ... this time, I didn't want to wait that long and she agreed that this is better!) 

I've been reading a lot about Red blood cells in the past few hours.  Fascinating to me.  Is it the under production, over loss or over destruction of the RBCs that's causing the anemia.!?! There's a typical presentation of those so one can tend to know which it is.  But Manny has a strange mixture of them so it's unusual (are we shocked?!).  So in my very unexpert opinion, we seem to have a mixture of anemias ... probably some iron deficiency accompanied by anemia of chronic diseases.  Throw in that he's has a few really bad infections/sicknesses lately that kicked his butt and this all complicates the picture. 

So ... it will be interesting to see if Iron in isolation is going to be enough to jump start his blood cells.  If not, he may need a transfusion still in a few weeks. 

8pm vitals check ... Manny has an axillary temp of 99.  Translation? That means he likely has a 100 temp and 100.4 is the magic "temp" here that could keep him here.  Fever is probably the only thing that would delay our departure goal of Friday. 

9:30  He is finally tired enough to go to sleep.  See, WE got up at 6 and have been going hard all day. But him?  He got a nice long nap this morning (with the help of sedation drugs).  Me? About to pass out I'm so tired.  Oh, and because I have no overnight bag ... I'll be doing it in my jeans and dress shirt with unbrushed teeth. 

So night all. 

Happy Anniversary

October 13 ... an historical day in our life. It's our one year anniversary of being on TPN. I know I mention it often but never really showed any of the process. So here goes.

Weekly, we get a bunch of supplies. These are just some of the supplies. Including gloves, alcohol, tubing, medicines, needles, syringes, etc. 

I know everyone handles their supplies differently but I like to spread them all out and then organize them into two piles. Disconnect and Connect. You see, every day, when he is hooked up to TPN there are certain supplies that I need. It varies per day because some days he gets lipids (fats) and other days he does not. Some days he is on Ethanol lock therapy and others he is not. Because the necessary supplies vary a bit, I like to think it through all at once and not miss anything.

Below is a scene of one week of supplies (minus the TPN itself and the vitamins which are stored in the refrigerator).

I put the Connect items into larger bags labeled by the day "Sun", "Mon". Then the smaller bags are the Disconnect supplies also labeled by day. Then I put them in a bucket so I can just grab and go for the day. (Been a lifesaver on more than one occassion when I was running late!) This particular week, they accidentally sent two weeks of supplies so I have two buckets.

Every day Manny is connected for 20 hours. When it's time to disconnect him, I turn off the machine. I disconnect the tubing from him. Wipe with alcohol (at least 20 seconds) and then on Sunday, Monday, Wednesday and Friday I will put in 10 ccs of saline flush followed by 3 ccs of heparin. Clamp. Swab cap. On Tuesday, Thursday and Saturday, it's basically the same but I flush with 20 ccs of saline and then administer the .3 of ethanol.

Then he is tether free for 4 hours. I try to time this for about 10am-2pm. Why then? Those are the main hours when we're out and about shopping, doctor visits, etc. And it's just easier on me and him to not be connected if we can avoid it.

The TPN bag needs to be set out for about 2 hours before connecting to him. Why? It's cold and it goes straight into the veins. It can cause temperature issues.

When it's time to reconnect, I get out the supplies, the vitamins and the TPN bag.  Then I put 5ccs of water from a syringe via a needle into the vitamins.  Reconstitute.  Withdraw and put into the TPN via a different needle.  TPN is clear ... looks like water.  The vitamins are a distinct yellow and it colors the bag that usual color you see when you see TPN.  (Except on Monday, Wednesday and Friday when we get Lipids and then the bag is white like milk.) 

 

 

 

Then it's time for tubing and I connect it to Manny.  To do that, I do alcohol, syringe of 10 ccs of saline and then connect.  Except for Ethanol days when I withdraw the ethanol along with about 1/2 cc of blood to make sure I got it all.  Then flush with 20 ccs.  Then connect. 

 

During the day, we put it in a black backpack.  When I carry Manny around, it's on my shoulder.  When he's in his high chair or wheelchair, it's with him.  You've probably seen it in a million pictures of him. 

 

At night, we hang the bag on an IV pole.  It works better that way.  Also, the pump needs to be plugged in so we do that at night and it runs by battery by day.

 

 

 

So there you have it!  TPN supplies.  After doing for a year, it's a no brainer.  I could probably do it in my sleep.  But I tell you, the first few dozen times, you FREAK OUT doing it.  Afterall, I'm about to connect "food" directly into my kid's veins, the one right above his heart!  In the hospital, I'm not allowed to touch it.  In fact, two nurses have to certify the whole process and sign off on  it.  And here, I'm doing it all alone.  But by now, I trust ME more than I trust anyone else. 

 

Another part of TPN is weekly blood draws.  Our home health nurse, Melody comes by to do it.  She also takes his vitals. 

 

And the last part of TPN is the dressing changes.  This happens about once a week.  I'll have to take pictures of that whole process some time.  Pretty fascinating too I think.  I also do the dressing changes. 

 

Now you're all officially certified in TPN supplies! Ha. 

 

 



Boston results vs clinical application

Wednesday:  Manny is doing pretty well with respiratory this time.  He still has cold symptoms but is managing to keep it (mostly) out of his lungs.  Therefore, he is stable and doing well.  He's feeling pretty good. 

We're doing the choo choo every 4 hours around the clock so that's keeping his lungs open and preventing further atelectasis or pneumonia.  He's doing well enough that I think we can go home soon. 

I asked the Pulmo if we could consider trialing him on just what we have at home to know if I can keep him safe and breathing at home.  This is the stand in doctor since our regular pulmos are at a CF conference across the state until Monday.  He doesn't like to make changes.  So looks like I'll have to ask Doc this question instead. 

He could probably go home tonight but it's not a great idea to push Manny right now.  I was even brainstorming with the nurse that we could PROBABLY handle him if we were discharged. And on cue, he coughed and choked.  As if to say, "Do I have a vote in this?" LOL So the nurse and I decided that one more day would certainly make more sense.  I think the docs will be on board with whatever I feel comfortable with. 

Meanwhile, on Tuesday, the GI decided to start trialing Manny on feeds in his Gtube.  That's right!  He hasn't had anything in there really since October 13 of last year.  Nervously, we started 5 cc's an hour for 6 hours of half strength formula.  Holding our breath, I watched him like a hawk for signs of distress.  He had NONE.  Wow!  That's awesome. 

Now for a reality check ... 5 cc's is like a teaspoon.  So that is like 1 1/2 tablespoons of liquid over 6 hours.  It's a looooong way to go.  But it's hopeful progress.

Wednesday we decided to trail him on 10 cc's an hour for 10 hours at 3/4 strength.  Sure.  Why not?  Afterall, what if it works!??  We would have the ability to get some alternate nutrition in him.  We could lessen the trouble on his liver from TPN complications.  etc. etc.  So it's certainly worth the try!

6 hours in, it all went horribly wrong.  The retching was very severe again.  He lost his breath.  Desatted.  He was aspirating.  Bad scene.  I immediately stopped the experiment.  (I had it put in the orders that we can stop if he doesn't tolerate.)  The nurse gave him a dosage of Robinul to dry up the secretions that were causing him trouble.  He eventually got ahead of it.  And we pulled the plug on the experiment for the day. 

Ironically, at the SAME MOMENT he was doing this retching, we finally got the report from Boston.  That's right!  It has finally arrived.  We have been trying to get there since MAY!  And we got results on October 10. 

I poured through the results and was in a bit of shock by the results.  (Drumroll)

Basically normal results.  They recommend starting to trial him on feeds. 

So imagine my conflicted feelings as those two events (receiving the "all clear to feed him" fax as he was retching beyond control).  Now what?!?!

As I write this blog today -  Thursday, 10/11/12 (cool date, huh), my brain is starting to process it a bit.  I have really teased out the report and found a few explanations of what might be going on. 

1) There was some small bowel inflammation.  Strange since nothing had really been in it for about a year. 

2) Gastric accommodation disorder.  This one also doesn't seem to make a lot of sense.  He was previously diagnosed with severe gastroparesis (less than 1 % left in a emptying study when 50 should leave).  But this diagnosis says he might feel "full" too soon and then retch.  This doesn't make sense because the retching is happening when he was being fed in the small bowel  BEYOND the stomach. 

3)  Visceral Hypersensitivity.  This is the only finding that makes any sense.  It's in the small bowel where he has too much sensitivity to things being there and it triggers the severe reactions.  There is very little that can be done for it.  There are meds we can try but basically it's something that triggers a brain reaction to say, "PROBLEM.. REACT." 

As I type this at 1pm, I'm still waiting for the GI to come in.  She will have received the same report as well as the documentation of the failed experiment.  Interested to see what she recommends on how to proceed. 

2:00  Manny's breathing sounds weird.  From what I can tell, the top part of his lungs sounds all junky and congested.  The bottom part of the lungs isn't moving air (or not much) called "Diminished lung sounds."  I called in the nurse and she heard the same thing.  Not sure why he's suddenly a bit worse.  He had a breathing treatment at 12 and sounded basically clear.  They did an extra breathing treatment to see if we can get ahead of it and stop this in the bud. 

3:00  GI here.  We talked about the discrepancy between the "Normalish" study and the inability to tolerate the feeds.  How can the tests and the clinical picture be so different. 

We agreed to try anyway.  Press ahead with feeds since the benefits are potentially so worth it. 

The plan ... Get another GJ placed so we can feed into the J and vent the G (Like we used to do a year ago).  She is going to try a formula that is very low in fat and is elemental to see if he can tolerate that.  We will restart with VERY VERY low and slow rates/volume.  We can start the tests here and continue at home once discharged.  But we agreed nothing else will be trialed in his G for now. 

She will evaluate the meds that he might need. 
She will talk with the Doctor who did the Manometry testing in Boston to see his ideas about why the test would be normal but the clinical picture not normal and how to proceed. 

Feeling cautiously optimistic about this plan!  Did I tell you how I adore having a doctor who listens to me?  She tells me I should go get my medical degree! LOL She thinks it's cool how I like to research and thinks I am good at it. I told her I wouldn't really want to practice but would love to have the knowledge base. 

4pm, Doc agreed to switch to using only the machines I have access to at home for the night. That way I will know if I can handle him at home or not. 

8am Friday morning as I write this part ... Manny slept pretty well with just the stuff I have at home.  Therefore I know I can try to manage this at home.  I'm a bit concerned because he is still sick.  His lungs are gunky and he's still coughing/choking, sneezing, watery nose, etc.  You know ... a cold.  But for now, he's still managing to keep most of it out of his lungs.  I know we'd both be more comfortable at home.  And I can bring him back if he starts to struggle to breathe.  So I will make a case for him to go home today.  Doc usually goes with my assessment of the situation. 

9am  Nurse said that IR (Interventional Radiology, the ones that will place the GJ) doesn't have the size he needs.  Those long term followers of Manny will recall how we spent 5 days in the hospital for this one time!  So we will schedule it and do it as an outpatient. 

10am Doc says we can go home! Now we just have to work on our TPN situation.  Since we're with a different GI and we're on different formula, not sure if we can use the bags at home (that would buy us a few days to get it all together)  or if the GI insists on using the current formula and then it's a mad dash to get the script to the Home Health Agency and the Pharmacist to make it then get it to me in time for him to hook up tonight. Obviously I'd like to avoid all that nonsense but we'll see. 

And as we transition back to this GI, we've never had TPN under them so we're not sure how different their protocols will be.  And I'll be under the GI that I seem to have communication issues with.  So ... leaving with a bit of unease and uncertainty about all of that. 

10:30  We can use old formula and go home NOW!!  Yay yay

Hemostat anyone?

Going to tell this story as quickly and succinctly as I can. 

This afternoon at 4pm they put in the Ethanol lock like usual.  At 8pm Manny was sleepy and falling asleep in my arms but I was trying to keep him awake with tickling him. But alas, he fell asleep. They came in to withdraw the ethanol.  It came out.  Blood came out.  Perfect.  Then she went to flush it and he said, "Ow, wet".  Something had "leaked" on his tummy and it woke him up. 

We thought the syringe wasn't screwed on right so she reapplied it.  Squirt.  Saline everywhere but couldn't tell where it was coming. She went to go get another syringe and we watched it slowly go in and water poured out from under his dressing.  That meant there was a break/leak somewhere in the line. 

I looked at the clock and noticed it 8:15 and suggested she go call the IV team ASAP.  I'd just seen Mani in the hallway about 2 hours earlier.  I know they leave about 9pm. 

I was sitting in shock.  Depending on where the break is ... this can be an "easy" repair.  Or this could mean that he needs a whole new line.  That is BAD news. 

The RT was there the whole time during this and we knew we had to do that breathing treatment now.  It will be the only one he gets through the night so we need it.  (Why? the sleep study, they don't want it interruped).  So I put Manny on the bed and she started the treatment which of course woke him up. 

I walked to the open door and nurses/techs were gathered around seeing what was going on so I told them.  I was there like 1 minute.  Then walked back to Manny.  When I did I noticed a huge stain of blood on the front of his shirt.  I immediately pulled up his shirt and it was spurting blood. 

You see, this line is placed right near the Superior Vena Cava (SVC) which is a vein right near the heart.  And while this is still a vein, because it's right there, it acts more like an artery.  I yell out the door. 

The charge nurse and nurse came running.  They knew they needed a hemostat (a type of clamp) and they came back with metal ones and no gauze.  I quickly remembered what Stephanie from the IV team taught me ... must be a plastic hemostat and there must be gauze or the line will be further injured.  They couldn't find one quickly so I grabbed my purse and pulled mine out.  I had gauze and the hemostat handy. 

All this took place in a matter of a minute or so.  The nurse clamped it.  That serves to make the blood stop spurting and air to not go into the line and create an air embolism. 

(There's a nurse near the door by now that I don't know ... I'll have to figure out who she is.  She was telling everyone that protocol is that every room with a kid with a central line should have a hemostat with gauze hanging in it.  That's the way they do it in the ICU.  I told her I've NEVER had a hemostat in my room, on the floor or in ICU but I know I would make sure that is done from here on.  I also suggested that this incident be the reason for the process to be evaluated for the future.)

 We clean him up.  Crisis stayed.  Mani comes in and we see where the break is.  Thankfully it's in a spot where it can be repaired!  That took only about 30 minutes.  My blood pressure started to come down.  Repair done.  Then another dressing change.  Manny was a trooper.  He was scared at first but then calmed down. 

Did I tell you he calls it his "fire hose" and pretends to squirt water with it when it's not connected to an IV?  I told him his fire hose broke and Mani was going to fix it.  He understood. 

OK so next problem.  You know how his blood sugars drop QUICKLY?  And you remember how I just said we were in the process of taking the ethanol out when it broke?  Well that means he had been off fluids for 4 hours and was going to need to get back on ASAP.  Problem?  Can't use a line for 4 hours after a repair!  There is no stinkin way he could wait 8 hours for fluids.  So we realized we would have to do an IV. 

Thankfully, Mani was able to get it on the very first stick like it was nothing.  She keeps telling me not to get spoiled.  Ha!  Too late. 

By then it was 9:30 and the guy arrived for the sleep study.  We're only doing the 7 channel ... not as much "stuff" as what we're used to all over his head and face.  (That's probably good news considering how traumatic this night already is.) 

He got it all set up and Manny fell asleep.  10pm

Me?  Trying to shake the whole thing! 

This was scary.  And I imagined what would have happened if I had been at home or away.  And truthfully I could have done it ... clearly.  I had the tools and knew how to use them.  I knew what needed to be done (Thanks Stephanie for the training!!).  So in that moment I could do what I needed to.  (God seems to prepare me for stuff so I try to pay attention as I go.  I know there will be a use of the info somewhere along the line.)  But if I'd been away from the hospital, the whole drive there and wait would have freaked me out a bit.  As it was, we were in the best place at the best time!  An hour later and the IV team would have been gone. 

God is good and is always looking out for me!  Thanks for the prayers!!

I told the nurse that she did a great job and thanked her for her help.  She teared up.  She was visibly still shaken from the event.  I told her that my life is full of moments just like this.  That THIS is what my life is like.  And she looked at me in horror.  And I told her that she did great in my world. 

Now on to the sleep study ... sadly, I'm hoping he has trouble breathing tonight.  What a strange thing to hope for I know.  But I just want them to "catch" what it is that he's been doing lately that's freaking me out at home.

Night all.