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.



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