Apr 27, 2013

More Drama

Tuesday late after noon told that it would be at least another week to get the bipap.  So I started plotting.  Seriously, if you leave me in a room by myself with a problem, I’ll find a way out of it.  Even if it’s a non-conventional way! I think outside of the box and am not afraid to use my resources!

So I realized I could get a day pass and at least leave the room.  (Got that approved.)  Then I realized, “I bet they RENT bipap machines.”  So I googled it.  Sure enough.  They do.  And it’s relatively inexpensive!  Back in September I needed a friend to bale me out and get me an oxygen concentrator at the last minute, on a weekend.  And they came through for me.  So I went with those same people again. And he can’t help but his identical twin brother owns the same kind of company and can. 

So I made all the arrangements.   I even thought through that I can’t imagine any reason why the hospital or doctors would object to my arrangements.  I’m not trying to go through insurance even.  I’ll pay cash so no approval needed.  Everyone agreed!

Tuesday night was  a rough night.  He was having the worst time breathing.  His bipap was alarming all night.  He was desatting while on the bipap.  It was bad.  Suctioning often, etc.    A long night.  I knew something was “off” just not sure what. 

But our plans were still to bolt out of here. 

I was talking to the lady at the DME (the one going to provide the vent/bipap) and she said it could be TWO weeks!  So I smugly thought, “No problem, I’ve rented the bipap for a month!”

As I was hanging up, the tech was doing vitals.  She said, “100.9 temperature.”  I was like WHAT THE HECK??? NO WAY.  I jumped up, felt him and sure enough he was hot.  Still being optimistic I hoped it was only a fluke.  But within the hour it was 102.1  Ugh.

The hospitalist determined he likely has a new viral thing and he also has an ear infection (left ear) and a swollen/red left tonsil.  (Interesting to me is that he’s never had one ear infection and now this is his second in a month, the month since his adenoid was removed.)  So start antibiotics. 

The rest of the day was quite slow.  5pm his TPN comes down and the antibiotic went up.  It’s IV rocephin and he’s had it a million times, including 2 weeks ago.  We even run it at home with no troubles. 

About 5 minutes into the antibiotic, he started complaining of stomach pain and then said his butt hurt.  Next he started ridiculous amounts of oral secretions and was retching.  I was suctioning often and called the nurse.  He then got very floppy and lethargic.  Called the tech to run his vitals … normal.  Called the nurse again, concerned. 

We ran through all the things we thought it could be.  I was thinking about all the times he went lethargic like this.  Once was with septic shock (that’s why I asked for the blood pressure.  That time it bottomed out).  He also went similar when he had that super low blood sugar on the airplane on the way to Denver.  (His was 122, the highest I’ve EVER seen his but still perfectly normal.) 

And the other times were when he was fed into his digestive tract.  He would do something similar.  So I drained his stomach … small amount in there but not much.  Certainly not enough to do all this. 

Other symptoms … palms of hands turned bright red.  Eyes very bloodshot.  Color … pale! (White) Sweating but clammy.  His heart rate started to drop.  Eyes rolled separate from each other sideways then rolled back in his head. 

He became non-responsive.  We couldn’t wake him up.  The charge nurse came in and called a Rapid Response.  (It’s one step below a “code blue” basically and it’s an “All hands on deck” response from the ICU team and several other hospital personnel.)  We slap bipap on him because he was desatting. 

At this exact moment in time, I get a text that Dan is here with 3 of the kids and dinner.   I don’t even get to text him and tell him what’s going on.  He just walks up to this scene of 25 people in our room and Manny unconscious.  Dan can’t even get into the room.  He sends the kids to this little alcove just around the corner and a child life specialist entertains them. 

(Funny note … this morning, one of the people who had helped said the strangest part to them was that the siblings weren’t all freaked out.  I told her that they’d seen worse!  I also took a moment as soon as I could to go see them.  I told them that I knew it was scary and it was a bit like the Denver airport but the difference was this time, we were in the hospital and not on an airplane so they could care for him quickly.)

All the people with the Rapid Response Team were brainstorming.  They thought of all the things we thought of.  It was quite helpful and also reassuring that they thought of the same things we had thought of.  They decided he would be moved to the ICU for closer observation.  They even assigned us a bed. 

The ICU doctor arrived with Manny’s neurologist.  They just happened to be together with another patient when they got the call.  So they brainstormed as well.  Seizure? Possible but not likely.  Heart? Maybe but doesn’t fit.  CO2 level? Normally they could get a blood gas off his central line.  But because he had been on the bipap for a while by then, it wouldn’t be accurate.  So they had to do a capillary gas .. heel prick.  They had to stick him 4 times to get it! And during those sticks, he started to come around.  By then, it had been almost 2 hours. 

He cried with the sticks.  Then he started to open his eyes.  Eventually he came back to us and was just tired.  He came so fully back that they decided to cancel the ICU bed. 

The kids got to see him awake thankfully and then it was time for them to leave to go home. 

He was fully awake for about 1 ½ hours before we finally put him down for the night (it was 10:30 or so by then).  He got his bipap mask on and then he just settled in.  He didn’t fall right to sleep but was peacefully laying in his bed with his eyes opened.  Eventually he drifted off to sleep. 

And there was NO drama overnight!  Not one beep or desat.  Nothing.  Fevers are also still gone. 
Photo: Music therapy with ms Julie. He's in heaven!
Music Therapy  with Ms. Julie!

As I write this, it’s Thursday and it’s been uneventful all day.  No one still has a good theory about what happened.  A couple of thoughts were thrown out.  Vasovagal reaction to the illness he is having?  (That’s where the vagal nerve gets stimulated and you pass out.)  Possible but doesn’t explain everything for sure. 

My theory?  The antibiotic made him nauseous, that triggered the vasovagal reaction and it just spiraled out of control.  No one else shares my belief about that. 

I want them to rerun the antibiotic today as scheduled so we know.  I need to know because this is my go to antibiotic at home!  I wouldn’t even dare think to do that if I wasn’t convinced  that wouldn’t happen again!  So I need to know.  And they don’t think it’s the antibiotic so they are going to continue it.  Works for me.  For completely different reasons but we both need to have the antibiotic run today at 5pm. 

I’m hoping I’m wrong.  We will see. 

It’s 10pm Thursday night as I write this… the past few hours have been quite eventful.  Just not in the way we expected. 

I had vitals done, pulse ox on, etc.  I had the nurse do a quick look over to show he was doing great.  5pm TPN comes down.  She flushes. He says “Ow” (which he often says when a drip of water gets on him so I figured it was that when I heard him say it. )  He was wearing a black tshirt and sitting in his wheelchair facing me so I could observe him. 

Nothing.  Absolutely nothing.  The 30 minutes pass and WHEW!  I guess yesterday was a fluke afterall.  Nurse goes to flush him and I pull up his shirt to help her and notice there is blood all over the white sheath we use to protect Manny from his line.  I pull up his shirt and it’s soaked.  Take him out of the wheelchair and there’s a large pool of watery blood.  Take down his pants and diaper … nothing.  So it’s up high.  Must be broviac! 

Sure enough.  It broke.  In fact, I bet it broke when she hooked him up to the antibiotic.  It leaked the entire contents of the antibiotic on him and not in him. 

The nurse isn’t convinced it’s the line but I am.  I ask her to flush it and we can see water shoot right out.  She calls IV team (they can repair it).  I put the hemostats and gauze on him above the break.  (They’re hanging by the bed for this very purpose).  I tell her I did it. 

The IV team shows up minutes later and we go to the room to do the repair.  Now this is BEST case scenario.  He’s only been off TPN for 30 minutes.  The repair has to set for 4 hours.  So he will not need a peripheral IV to maintain his sugars.  The nurse was about to instill ethanol lock and those are very helpful with a line repair but you usually can’t get one last minute and we had this one on hand.  And Mani is the IV team person on call.  They’re all good but Mani has done his other 2 repairs. 

Now this is tricky because of the placement of the previous 2 repairs.  Long story short she decides the best place to make the repair and she cuts off his line.  (That’s a SCARY sight no matter how many times I’ve seen it!  My heart skips a beat!) 

Voila!  Repair done.  But it takes longer than expected.  By the time it was done, it was 6:30pm.  He’ll not be able to be hooked up to TPN until 10:30 and his sugars usually drop at about 5 hours.  This will be 5:45.  So really really pushing it.  I told the night nurse to have his TPN ready to go so that at 10:30 on the dot we can pull out the ethanol and start TPN.

Finally, there’s still the mystery about the antibiotic and if it was the trigger for the episode yesterday.  So I’m going to ask that we run the antibiotic earlier in the day tomorrow.  If all goes well I want to be discharged.  If not, well … another day.  But I need to know. I run this antibiotic all the time at home and I NEED to know.  I won’t ever feel safe using it without a test run. 

Meanwhile, I was able to get the rental bipap.  Dan went down and picked It up and delivered it to the hospital.  The pulmonologist wanted us to run it here and test it here one night to make sure it’s all good to go.  So tonight will be the first time I’ve used this and I wasn’t even privy to any training.  But I think I’m good to go.  Hoping for a BORING night!

Friday.  The night was VERY boring!  Bipap was perfect.  All is good. 

Now the only detail left hanging is the rocephin (antibiotic).  I think his episode was related to that.  They do not.  (I’m the ONLY one who thinks so).  They wanted to send me home with 3 doses of it for home use.  I insisted (nicely) that we run one here before we go home.  The nurses have seen enough of my judgment calls that they trust me. 

We did all the vitals.  We left the door open.  1:30 we started the medicine.  Meanwhile, Molly the Chaplain was here and she asked what I wanted for prayers.  I told her that if we were going to have a reaction, that it be HERE and not at home.  Before the prayer was even over, it was clear he was reacting again.  We immediately stopped it at  1:40 (he got 6 ml of the planned 16 ml). 

We administered Benadryl.  We started him on bipap.  He went to sleep.  As I write this, it’s 6:40 and he’s still OUT. 
Photo: My view. He got the antibiotic at 1:30, reacted, it was stopped by 1:40. He's been out ever since. That's 3 hours and counting. If/when he wakes up, we are still slated to discharge tonight. (not quite thrilled about that plan yet)

So yes, I was completely right.  He’s majorly allergic to this medicine.  Good to know as it’s our “go to” medicine when we’re in the hospital and at home!  (Well, it was.)  I’m so thankful it happened there and not at home or on the road.  I’ve even administered it at Busch Gardens before and in the car.  Sheesh.  Thanking God for His protection. 
Oh and for the record, I told the fill in hospitalist to tell Doc that, "Mom was right. Ha ha ha."  Why? Because he was convinced it wasn't and I was convinced it was the antibiotic.  Just had to make sure he knew! :) 

8pm he opened his eyes.  I asked if he wanted to stay in the hospital or go home.  He said home.  We took off the bipap and he asked to sit up and play ipad!  Just like a lightswitch, he was on again.  I know I breathed a ridiculous sigh of relief!  I’d been on pause since 1:30. 

We packed up, got discharge papers and headed home.  In the car by 8:45. 

The concern wasn’t about the reaction.  We had already seen how he recovered from that.  My concern was the original plan was for us to go home with 3 days of IV antibiotics for the tonsillitis and ear infection.  But now we’re going home on nothing.  It makes me concerned that these infections will get out of hand and we’ll get a fever and end up back at the hospital again.

Normally a person could get an oral antibiotic but Manny can’t do those any more.  And Rocephin was the IV one we could run at home.  So now we’re out of home options.  We’ll have to be admitted to see what other antibiotics he can do.  And of course, he’ll be closely monitored! 

Friday night was hard … it always it reemerging into our lives.  But also so good to sleep in our own beds.  To have food in the fridge.  To be able to do what I want when I want without worrying about missing the doctor I’d been waiting all day to see. Etc. 

Manny fell asleep around midnight and I got to sleep about 1am.  The bipap works wonderfully and he barely wakes at all at night!  Such a blessing.  When Manny woke up, he immediately started telling me the things he wanted to do.  Sit in his high chair, play puzzles with Zoe, etc.  So interesting to see what he missed as well. 

Saturday was relaxing day.  Daddy had a church related meeting so the kiddos and I just hung out.  Very peaceful. 

We already know we will be back at the hospital soon for at least 48 hours.  Why?  The bipap I have is just a rental.  The one we will be getting will have to be taken to the hospital and tried there for 48 hours.  Isn’t that dumb?!?  Oh well, it’s another hoop we have to jump through.  I’m just thankful he’ll continue to be able to breathe at night.  Amazing how important that is! 

But for now … we enjoy being home.  For however long that is.



Apr 25, 2013

Week update (finally posting it)

Update on Manny …

Thursday we were supposed to move out of ICU.  In fact, back to the same room 222.  But after several hours of waiting, we were told the floor was over booked and we’d be staying in the ICU another night. 

It’s not a huge deal, just lots of little things.  Like there is no potty or shower so I have to leave the room multiple times a day.  They make me wear the gloves, gown and mask for isolation (that’s hot 24 hours a day!)  There’s no way to get needed supplies (the nurses have to get EVERYTHING).  So nothing horrible, just not comfortable. 

But the trial on the Bipap the first night didn’t go so well so it was actually better we stayed in the ICU so we would have a respiratory therapist more readily available to help adjust.  And that was the right call.  The machine beeped ALL NIGHT LONG.  It was miserable to say the least.  The night was very,very, very long.  Manny tolerated the bipap very well again.  He actually went right to sleep before we even adjusted the machine or his cannula.  They were trying to use the nasal prong type of cannula and that just didn’t work!  It was beeping all night.  There are two levels of alarms … one is a quick beep and says small problem.  The other is this full fledged “come here NOW and deal with this” type of   alarm.  ow and deal with this" alarm. It would do this until I would get up, walk over to his bed and reposition him and the cannula. Sometimes that would work for 30 minutes, sometimes 30 seconds. I can't tell you how many times it would alarm as soon as I would get in my chair, get my covers on and close my eyes! And I was the only one messing with this.

By 4am, the RT came in for his routine check and asked how it was going. I expressed my concern that there has to be a better way! So he asked why we were using it again and I clarified. He came back a while later with a different type of nasal mask. 5am we tried it on. Success! Only 3 minor beeps (the kind I don't have to get up for) until 8 am.

Next we have to work on the mask not leaving "bite marks" but I have hope we are on the right track. It also assured me we were doing the right thing by getting night nursing!

This morning he looks strong and bright! Bipap is the right call!
It would do this until I would get up, walk over to reposition him and the cannula.  Sometimes that would work for 30 minutes, sometimes 30 seconds.  I cannot tell you how many times it would alarm as soon as I would get in my chair, get my covers on and close my eyes!  And I was the only one messing with this.  

By 4am, the RT came in for his routine check and asked how it was going.  I expressed my concern that there has to be a better way!  So he asked why we are using it again and I clarified.  He came back a while later with a different nasal mas.  5am we tried it on.  Success! Only 3 minor beeps (the kind I don’t have to get up for) until 8am. 

Next we have to work on the mask not leaving “bite marks”.  But I have a feeling we are on the right track.  It also assured me we were doing the right thing by getting night nursing!!  Absolutely no way I could keep up with all of that. 

Friday we moved back to the floor … ironically back to room 222, where we had come from before ICU.  I like this room back here.  It’s in the back pod (quieter).  It’s not a corner room (the smallest) or the middle room (the one with the thin curtains and no storage).  It’s the best room in my opinion!

I talked to the social worker who is working on nursing and the bipap machine.  At 2pm we were told no problem with nursing and we were on schedule for Monday arrival of the bipap machine.  At 5:30 we were told there was no staffing at agency one and I would have to choose another one and that insurance denied the bipap claiming he’d have to have a sleep study first. (Which is not correct, it’s just not coded right.)  But basically that means … We will not have a bipap by Monday and our stay was just extended again.  Indefinitely. 

Health wise, this was the first day we had Manny off all day time breathing machines.  He got tired about 6pm but otherwise did amazingly well!  It was a big deal that he made it back to his baseline.  And if we had the machine, this gave us the clearance to be able to go home. 

Friday evening, Dan brought the kids to visit and Kaley to say.  Yay!  Relief. 

Friday night the bipap again went on successfully and relatively easily.  I’d taken a picture of the “bite marks” from the mask to show the RT so we could pad it and we did.  Somehow the mask shifted in the night a tiny bit so it left an asymmetrical mark.  And he cried quite a few times but overall it was a decent night.  I also had to suction quite a bit.  (Again, thankful for nurses coming soon!)

Saturday was uneventful with his health.  He technically could come off isolation precautions but I’ve had them leave them up so that the nurses won’t bring stuff TO us accidentally while we are here.  

The only thing unusual about Saturday was I actually left the hospital for a few minutes!  I don’t have my car here with me like I usually do (never need it).  But I needed food.  That’s a great thing about Kaley here … I remember to feed her which means I remember to eat.  (I went more than 24 hours without food the other day before I realized it!) 

In the spirit of asking for help, I put a status on Facebook asking if anyone would like to take me to the store.  I had numerous offers.  (Overwhelming.  Humbling.)  And I accepted the one who could get to me the fastest.  So very grateful. 

Saturday night … again, successful Bipap.  Very few beeps.  He cries “No bi-pat” when we put the mask on but is asleep in no time.  The machine here is actually a ventilator with bipap settings.  So there’s this screen that shows his breaths in and out and when the machine breathes for him.  It’s crazy how often he doesn’t breathe!  So very thankful he’s going to get the help he needs. 

Sunday morning … he woke up perky!  After only 11 hours (he usually sleeps about 14).  I sat him up in bed and he was actually SITTING.  It was crazy how strong he was.  He then turned his trunk a bit to see Kaley sleeping.  He’s NEVER been able to do any of that.  Guess it helps when you get a good night sleep and only have to work half of the day. 

It’s been another boring day.  He’s healthy enough to be home, just stuck here due to the machine issue.  So we’re just hanging out in our room. 

So we have discovered two more allergies while here.  Both are going to be a pain in the hiney!!  

You know the antibacterial foam they use when they walk in and out of a room?  Uh … he’s allergic.  It leaves a patch of contact dermatitis every place they touch.  So people will have to use gloves EVERY time they touch him.  That’s a relatively minor thing but it’s just hard to get people to change their habits and be constantly on top of it. 

The second one is … he’s allergic to his own tube.  There’s something about it touching his skin and rubbing on it that causes a contact dermatitis.  The other day I noticed this strange rash but couldn’t figure out what it was from.  This time it was back so I investigated further.  It was the exact length of the tube that was touching his skin. 

Called the IV team and they called the wound care nurse.  The rash isn’t all that impressive quite frankly but we need to stay ahead of it as his contact dermatitis episodes turn to cellulitis and to sepsis easily.  We have a solution that seems to be working.  So far so good with no new rash developing. 

Sunday night … again, he objected to going on the bipap but was completely asleep before we even finished putting on his mask.  The RTs and I noticed that the machine was triggering ALL of his breaths.  It’s like he said, “Oh, I’ll just take a little break from breathing.”  It was quite shocking to see just how little he was breathing.  At first, the machine said, 0% patient triggered.  After about 30 minutes he settled in and started breathing again and it was 40% patient triggered.  By morning as he was waking up it was 95%. 

The point?  He needs the bipap. 

Monday … working on getting all the equipment set up for home so we can GO HOME.  We’re not there yet but we have made progress. 

Apr 20, 2013

I see you

I see you. 

I see you, the ones looking at my son in pity.
I see you ignore him like he is furniture.
I see you talk about him like he is not there. 
I see you do things to him without considering his feelings.
I see you talk to him in disrespect.
I see you make him meet you on YOUR terms not realizing he’s little and scared.
I see you sigh when he doesn’t instantly comply. 
I see you complain when he needs something.
I see you fuss at him when he asserts himself; objecting to having no control over what is done to him.
I see you assume he has no qualify of life.
I see you assume that just because his body is weak, so is his mind. 
I see you whispering outside of his room.
I see you saying maybe he’d be better off if we just let him go. 

And I see you, the ones trying to keep a distance, not to get too close because one day, well …
I see you drawn in by his charm but then pull away as to not let your heart get hurt.
I see how conflicted you are. 

And I see you, the ones who love despite risk.
I see you talk to him with kindness and respect.
I see you light up when he says your name.
I see you want to do anything to make it all better.
I see you tear up when he is hurting or sad.
I see you go above and beyond to connect with him.
I see you rush faster to his beeping machines than anyone elses. 
I see you sneak him cars, even though you just brought him some. 
I see you thrilled when he makes you feel he is your favorite. 
I see you rub his hair and caress his cheek.
I see you linger just a bit.
I see you sit and stare at him, watching in awe.
I see you giggle when he asserts his own independence and thought.
I see how much you want to help, but feel helpless much of the time.
I see you want to know more, would love to do more. 
I see the way you find out where he is and join his world.  
I see the pain in your eyes when he has to endure something he doesn’t like.
I see you try to give away those jobs that will cause pain to someone else to do. 
I see you talk with pride about how far he’s come. 
I see you amazed that he’s still ALIVE and thriving.
I see you happy to see him, but sad he’s sick or hurting.
I see you are amazed by his strength, beauty, bravery and courage.
I see you view him as a unique child of God.
I see you loving him like your own son. 
I see you all in. 

And son … I see you see it too. 



Apr 19, 2013


Reflective.  That's how I've been.

I wrote on Sunday and now it’s Thursday with no update about the hospital stay.  I’ll summarize it. 

Most of the days have been him getting a little worse each day.  Friday night he only needed extra breathing treatments to get him out of respiratory distress.  Then on to room air.  Saturday night he started desatting at 9pm and had to have breathing treatments and put on cpap by 3am.  Sunday he was on continuous cpap all day.  He didn’t sit up all day.  He was not himself.  And he had a crisis at 6pm. But the breathing treatment (aggressive kind he hates) worked.  Monday he was sitting up for about an hour.  Rest of the day was him on cpap round the clock.  We did do 2- 2 hour trials of him off cpap to see how he did.  Let’s say he did fine but I could tell when it was nearing the 2 hour mark. Tuesday he was almost back to himself.  And we saw the first sign that we had hit the worst of this illness.  Wednesday we hoped he could be off longer but nope, just 2 – 2 hour trials. 

We also moved to ICU on Wednesday.  Not because of decline, however.  The pulmonologist, ENT and I decided it was probably time to put him on BIPAP and that can only be done in the ICU here.  We wanted him close to baseline when we trialed this.  So it’s actually a good sign.  We have hope of a discharge plan coming soon. 

Our biggest obstacle seems to be that he cannot hang with just room air by day and I’m not exactly ready to put him on 24 hour a day bipap yet.  But it’s a possibility. 

So that’s the medical part.  (Well, most of it … there’s the never ending iron saga and some strange labs and some concerns I have along those lines.)

But mostly over these days I’ve been very reflective.  Last week … I hit bottom.  I feel like I’ve been juggling 1000 balls and last Wednesday, they all came crashing down.  I dropped them all.  And it was very hard.  I picked up a few on Thursday, hoping to be able to pick them all back up again but instead Thursday night further kicked my hiney.  By Friday morning, I realized I could not/would not pick them all back up again! 

I called several resources and reached out for help.  First was Mom to come by (I hadn’t even called, I think she just sensed it… Great moms are like that!)  She took all the other 5 kids so we didn’t have to worry about them for a day or two.  I then arranged for some needs of mine to be met (like the tooth and dinner).  And then checked into the hospital. 

In a very strange way, this has been a very needed rest.  It’s strange to even say it that way but I needed some down time.  With all the proverbial balls still on the floor, I didn’t feel the weight of the world on my shoulders.  I am being selective of what I will pick up and what I won’t.  (Or at least I’m trying to.) 

Here, there are no dishes, appointments, laundry piles, homework, etc.  Just Manny to care for.  And his needs, while scary at times, have been relatively minor this time.  He clearly needs to be admitted and they’re not in a hurry to rush him home so that’s given us the time to just “Be”. 

I’ve spent the time working on my long term plan.  I wrote in a recent blog entry that Dan and I had been told the philosophy of “don’t make permanent decisions based on temporary circumstances”.  But I had the epiphany that I was doing the opposite. 

What does that mean??  We hope Manny lives for a very very long time!  But nothing in our lives is set up like he will.  And that was a hard realization I just came to.  It’s all very temporary.  I have been living from crisis to crisis in survival mode.  But that’s been THREE years now! 

So this time has been well used.  Time to reflect on the big picture.  Time to make plans for the future.  A future WITH Manny. 

People say that I need to take care of me.  And that’s fair enough.  Afterall, I’m not living like I want to live a long life (sleep, exercise, good diet, fun, relaxation, etc).  Not planning on next week, much less next year or beyond. 

But the truth is … my needs are soooo minor compared to Manny’s that they just don’t get met.  Like if I need a shower but he is not breathing well and needs constant suctioning or he will stop breathing … uh … it’s not even a close call.  And that’s the way it is right now … if I meet MY needs, then HIS needs are not being met. 

That won’t work. 

So what will? 

I need ALL of his needs met.  They just can’t be met exclusively by me any more.  And when some of his needs are being met by someone else besides just me, THEN I will be able to do things for myself. 

This is why Kaley’s gift to me has been so amazing.  She gives me the gift every night from about 8pm-10pm by myself.  She is watching him and meeting his needs.  And if he needs something she can’t do, she knows what to come get me for.  But if I don’t hear from her, I know she is meeting his needs. 

Now I need that done at night too. 

When he is well, his overnight needs are very few.  Truthfully it’s no biggie.  4-6 times a night he needs to be repositioned.  That’s about it.  But on nights when he’s sick … it’s constant.  And if I miss one small detail, the outcome could be horrible.  So those nights are very very long. And those nights have done me in. 

I say all of this like it’s no big deal.  But the truth is … I now feel like a failure in some kind of way.  In my head I know better but this is a heart thing.  I’ve been in constant tears since being here.  I feel I’ve let him down.  But I know that I’m actually making changes that will enable me to take BETTER care of him.  It just doesn’t feel that way. 

I also keep hearing in my head, “You made your bed, now lie in it”.  We CHOSE this.  We did this on purpose.  Well, sorta.  So it’s like I don’t deserve help since I chose this.  But I know this is crazy too.  That’s no different than saying the person who chose to get pregnant and had a special needs child doesn’t deserve help and I know that’s not right.  But it feels like it in some weird way.

There are a million other thoughts like that floating in my head.  Where my heart and mind don’t match up.  And I’m going with my head. 

And with all this nicey-nice being said … there is a LOT of work at the end of this epiphany.  No matter how it shakes out, many things have to be adjusted and changed. 

Like what?  One thing is night nursing.  Starting Friday I asked to get the ball rolling with nursing.   It’s been a lot of talking to people, phone calls, etc.  And it’s just begun.  Still have to work with insurance and the staffing person interview and a home inspection and interviewing the nurses and writing out expectations, etc.  Then once we get all that set up, there’s still the fact that a person is in my house every night.  I don’t even sleep well when friends/family stay overnight.  So somehow that will have to change!  Then there’s the whole is Manny safe in their hands?  My other kids? Etc etc etc.  And if I let myself think about it, it’s overwhelming almost to the point where I don’t want to do it. 

And then I remember back to my feeling last week when all the balls dropped.  And I press on. 

Then there’s the whole thing about him needing a room/space.  Right now he sleeps in our room so I can hear him and reposition him and suction him and give him oxygen or whatever he needs.  But now he’ll need a room of his own.  And we don’t have a room.  We have a 5 bedroom house and all the rooms are FULL.  We’re busting at the seams of our house as it is.

Room one is Dan, Manny and me

Room two is Zoe and Kaley

Room three is Sam and Luke

Room 4 is Jacob and guest room

Room 5 is Dan’s office

The rooms are too tiny to put Jacob in with the boys really.  He could sleep in the living room but that’s not very private and it’s just awkward to have so many machines in there. 

We could do either of these short term, but not long term and those are my thoughts now.  We need to plan for the long haul!

So to me the only solution is for him to move into Dan’s office and for Dan’s office to move to the garage and the garage stuff to get sorted (tons needs to just go away and some in a storage unit we need to buy).  It’s the solution with the most work.  Dan’s office has a LOT Of stuff.  Garage is out of control.  Garage door needs to get repaired.  Etc etc

And again, the feeling of overwhelm creeps over me.  But I have to do something.  I need to plan for the long haul!  So must bite the bullet and suck it up and do it. 

Our time in the hospital this time is coming to a close.  And I reflect back on all the times we’ve been ready to be discharged.  There are times we’re exhausted.  Sometimes it’s a feeling of “why did I even bother going in”.  Times it’s been like I couldn’t get out of here soon enough.  And other times where I felt like we were going home too soon.  There were times I went home FRUSTRATED.  And other times hopeful.  And I’ll never forget the first time we went home (almost 3 years ago) where I had a DNR in hand and an appointment with hospice.

This time?  I feel like I’m going home to a new chapter.  It’s not been written yet so no way to know how it will go.  It’s very unfamiliar territory and I have no GPS for this trip.  But no way I can go back on the other road … that road washed out! So must trudge forward. 

And where is God in all of this?  That’s the strange part.  He’s still there.  My faith is not shaken.  I know He will provide.  He always has.  He will just be providing in a new way. 

New nurses will get to fall in love with this little amazing guy.  New people will have the pleasure of loving him and caring for him.  New people will know of his testimony and of his incredible zest for life.  Our world will expand. 

My goal?  To get some sleep.  Simple as that.  I hope to be a better mother because I’m not up 24 hours.  Maybe I’ll have some energy to play and live beyond just enduring and surviving.  Maybe I can truly participate in my life rather than just going through the motions like a zombie.  Maybe I can stop feeling like I’m 84 and feel more like 44.  (Because in my mind I’m still 24!) 

My goal is to try to see things in the long term … not super far like a decade out.  But say a year out.  Because for the past 3 years I’ve been seeing moment by moment and that’s about it.  SURVIVAL mode. 

And I feel this is a transition that’s actually challenging.  Not sure why but it’s a difficult shift in mentality and in my spirit.  I know that seems strange. 

The past week part of my reflection has also been to share some of the burdens I’ve been carrying.  I’m telling people (who can and want to help) of just what has been on my plate … things no one knows about.  I’m telling them of some of those proverbial balls that I was juggling that I’m no longer willing to pick up. 

And there will be fall out from this.  (enough said for now about that).

But sometimes you have to purge the old stuff to make room for new and healthy stuff.  I’ve been unwilling to share for a myriad of reasons.  But those reasons are no longer enough reason to stay silent.  I need the help and no one can help if they don’t know I need it. 

So I’m learning to say YES to receiving the help even though it’s embarrassing and hard and painful.  It feels like failure but I know it’s not.  (again with the heart mind conflict). 

Night nursing is the first step. 
Getting a permanent place for Manny to sleep is step two. 
Who knows what’s beyond that.  (those steps are overwhelming enough already)






Apr 13, 2013

Changes are a comin

I finished my last post talking about how exhausted I was Thursday night.  Well … have to say it just got worse from there.  Manny did HORRIBLY all night long.  He was going in and out of respiratory distress and even with oxygen, I couldn’t keep his saturation levels high enough.  He then topped out at a 104.1 oral temp.  I couldn’t protect his airway. 

Friday morning the ENT’s nurse called to check on us and I told her about the night.  She suggested strongly that I take him to the hospital … just in case.  I called the pediatrician (who knows Manny and me well) to pick her brain and see if there was any other things I could be doing (like medicines, etc) to keep him out of the hospital.  She said no. 

Meanwhile, Kaley was still sick.  Mom came by with a plan.  She would take ALL the kids so I could go to the hospital.  And this way, all the sickos had a mom to nurture them.  Plus, this freed Dan (hubby) up to help me out.  I had my 3pm dental appointment for my last step of the dental implant.  And that’s only a couple of miles from the hospital.  So Dan drove us.  It was fast enough that we still had time to grab a bite.  (It was 3:30pm and I hadn’t had any breakfast or lunch yet.)  We stopped at Chili’s and I even had enough leftovers for a late dinner.  Then Dan helped schlep our stuff from the van to the hospital.  Wow!  So very nice.  Normally I would have just skipped the dental appointment and food and headed straight to the hospital.  But because Mom took the kids, Dan could come with me and helped me out. 

And Manny was doing great.  Fever had broken.  Yes he was choking and needing suctioning often … but we had our suction machine with us. 

So we were home for 2 nights.  (sigh)

Friday night … mostly uneventful.  Until 2am.  Then he went into respiratory distress .  Major sweating, retracting, flaring, desatting.  Eventually the suctioning, breathing treatments and repositioning all worked.  He went back to breathing well.  He desatted a few other times after that but it wasn’t a huge deal and he popped right back up to normal. 

His labs are “off”.  There are some concerning things to me … there’s an acute thing but also what I think is a chronic issue.  I hope I’m wrong, because if I’m right, he has a new pretty serious diagnosis coming.  So please be wrong!

Saturday has been quite uneventful.  I’m just exhausted.  (Understatement). 

ENT says that hopefully he will clear this current infection and be on the mend because she is concerned about how to protect his airway.  If he doesn’t get ahead of this quickly he will continue to have breathing issues and eventually fatigue.  Or we could take his tonsils but how can we protect his airway then when he did so horribly with his adenoid removal?  So … either way … it’s complicated.  (What’s new?)

The only other thing going on is an epiphany.  Not sure what all it entails and how it will play out but suffice to say I am going to need help.  Years ago Dan and I heard a phase: Don’t make permanent decision based on temporary circumstances.  But I realized … we’re doing the opposite as it comes to Manny’s care.  I know that’s vague but we live from one crisis moment to the next.  We are in survival mode.  Not sure how to fix that but it’s going to have to!  Trust me, this won’t be the last time this conversation comes up. 
Changes are a comin




Apr 11, 2013

Calgon, take me away!

Wednesday April 10 was a very very long day. 

The night was bumpy to start with.  Manny was having troubles off and on with breathing.  Then he eventually settled in. 

The GI nurse practitioner did her normal stop by at 5:30 and wake me up thing.  But thankfully she only said a few words (“We’ll keep status quo”) and left.  Thankfully that was that.  But hard to go back to sleep even though I was exhausted. 

8am Doc came in to discuss the discharge plan.   What the heck?  I know.  So Manny has a virus that can affect respiratory systems (his biggest weakness).  He also has a high fever.  (Hospital policy is 24 hour fever free before discharge … not just for Manny but hospital wide.)  But I had a doctor appointment to get to.  (More about that in a second.)  So they made an exception and let me go.  I thought they’d just give me a day pass and make me come back for the night but he did a full discharge instead.  It’s risky.  But we always color outside of the lines! 

10:30 he had a 101 temp so we got a Tylenol “to go” and headed out. 

11am picked up Jacob so he could go with me.  Usually Kaley goes on doctor visits to help out but she was still having 104 plus temps.  I need someone in the back seat to help with Manny.  To keep eyes on him in case he is having trouble breathing.  To help with handing him toys, etc.  So Jacob was my guy. 

1:30pm arrived at the appointment.  What was this?  We drove to Nemour’s Children’s hospital in Orlando.  We were there to see the MDA neurologist.  Now we already have an MDA doctor in Tampa … Dr. Fernandez.  He’s awesome!  He’s in Manny’s book and he even appeared on the MDA telethon spot about Manny.  It was Dr. F who actually suggested we go to this new clinic as they have more access to resources than the local Tampa facility.  So we went.  In fact … Dr. F was with us!  As was Paula from the MDA. 

The facility is amazing … looks and feels much more like a hotel than hospital.  I also love there was handicap van access parking.  And one of my favorite features?  A changing table in the bathroom that could accommodate larger children!  You know those little changing tables for infants?  Manny is getting so big that it’s hard to change him on them.  I usually end up waiting until I get to the van to change him there.  This table was big enough I could have easily put my 9 year old on it.  (OK, yes, I’m weird!  It’s the little things!)

The visit was a bit overwhelming in that the room was a bit small and many people coming and going.  I didn’t know who anyone was or their roles.  The whole thing was just a bit too much for manny and he LOST IT.  I’ve never seen him fall apart like this EVER.  He just screamed/cried for the longest time. 

When I made the appointment, I had no clue it would be for a whole team and not just the neurologist.  I am quite familiar with team clinics as that’s what we have for Zoe and the cleft team.  Hopefully this team will eventually be as well run as the other teams I’ve participated in.  But this time?  It was a bit disorganized and chaotic. 

I also had no clue that the majority of the time would be spent on conversations with the Physical Therapy and Seating specialists.  And while those are very important, they’re not very high on MY personal agenda currently.  They spent a great deal of time talking about his wheelchair (which has 2 broken pieces) and making sure his knees/ankles were aligned, that he was getting the right amount of PT, etc. 

Now you have to realize … if Manny were a typical MDA type of patient, that would be precisely what I would need the most help with most likely. 

But as you know, Manny is anything but typical.  I’m concerned about breathing, airway, and eating.  I’m concerned about not getting a central line infection and how to keep him off bipap.  I’m concerned about making sure he gets the proper things in his TPN in the right amounts so he doesn’t crash.  So the footrest that’s missing on his wheelchair isn’t that big of a deal to me.  In fact, I’ve found it great to be honest!  He can now swing his legs freely and has gained a lot of movement as a result.  If the footrest were there, he’d not have gained that skill.  (But what do I know!?!?) 

Because I didn’t know this was a team meeting, I made another misstep.  If I’d known, I’d have insisted GI personnel be present at this team meeting.  Why? Because the vast majority of Manny’s big issues are GI related.  I can’t tell you the number of conversations with GIs that say it’s neurological and the number of neurologists who insist it’s GI.  The truth?  It’s BOTH.  They can’t be separated.  And so GI should have been there. 

But with all that said … the Neurologist got a thorough history and will start to devise a plan.   I think most doctors are used to being able to hear a patient history and immediately have a starting place.  But Manny requires a bit more thought.  So we have the hope of a plan!  I’ll be getting some records, he will be talking with some experts.  We will converge our thoughts. 

Now meanwhile, Paula and Dr. F were with me most of the time.  It was so great having them there.  Paula because she is like a sister and she was emotional support just being there.  Dr. F because he could corroborate my story.  Manny’s story is way off the beaten path and it’s difficult to even believe.  Many doctors don’t take patient histories at face value.  So it was great to have the Doc there to shake his head yes with the whole story!  :)

There were some funny things that happened but I’ll have to save them for another time. 

After a long 4 plus hours, we drove home.  By the time I got home it was after 8pm.  The kids were still up waiting to see me and Manny.  As I got out of the van, Sam greeted me with tears in his eyes.  He said he had gotten in trouble at school.  Knowing this was very unlike him I asked for the story.  Long story short, the teacher had sent home a note about a homework assignment she wanted the parents to do.  It says on the note, “Please CONSIDER doing this …”  Well it was due on Wednesday and uh … I hadn’t done it.

Apparently she yelled at the kids in the class whose parents had not turned it in on time.  She basically told them that we must not love them.  She guilted them saying that no one in her life had ever let her down and etc etc.  Sam was DEVASTATED!  I told him I would handle it. 

Then it took 2 hours to get all the kids calmed, medicated and tucked in bed!

And then I wrote the teacher a letter.  I didn’t FEEL calm and patient, but I wrote a very kind letter explaining the tears from Sam and a few of the behind the scenes issues of our life.  I also completed my homework assignment and put it on Sam’s backpack for the morning.   

Then I opened the mail and got some bad news regarding a bill we supposedly owe that’s a LOT of money that we don’t have.  Hopefully Dan has the energy to fight this because I just don’t.  And I can’t let them garnish wages.  Just another stress I do not need. 

Manny had a very very rough night of sleeping.  It’s likely that he would have been better off in the hospital where he would be monitored closer while I slept (ha, like I slept).  But  it’s that gray area.  So Dan slept on the couch and I suctioned and repositioned all night … often. 

So that’s my very long day. 

As I write this, it’s Thursday night.  I’m beyond exhausted.  I did 11 loads of laundry, 3 loads of dishes, umpteen phone calls, multiple emails, etc all while taking care of Kaley who is still very very sick.  And Manny who needed constant suctioning all day.  Makes me a bit concerned about what tonight will bring. 

Oh… and Zoe and Sam now both have headaches … the way it started with all the other kids.  (sigh)

Calgon … take me away!