Monday, May 11, 2015

The Monkey In The Asylum *Day 6* Crashing Down Down Down....

Previously .... on the Crazy Hospitalization ....
The Monkey In The Asylum *Day 1-2*  ,,,,
The Monkey In The Asylum *Day 3* The ER  ....
The Monkey In The Asylum *Day 4* The Day of Sleep 
The Monkey In The Asylum *Day 5* Party Like A Rock Star 


The laptop we had with us at the hospital broke.  It was the only laptop we could take with, that would actually travel.  Mine has a busted screen.  So I have to use my phone, and I just haven't figured out how to blog on my phone yet.  So the blogs from this point on are posted after the fact (on May 17th - after we got home.) but I am setting it up to post on the dates it happened.

So ....   if you read the last entry, you know about where we were at with the whole thing.   Nathan's heart rate was OUT OF CONTROL....  he was going from 140 to 190 and it just wasn't okay.   His respiratory rate was high, he was usually hanging around the 30 to 50 range.  He was shaking uncontrollably (not a seizure)... a fever was starting to peek past the ibuprofen and tylonel .... vomiting, he was miserable....  And then there was the non-registering blood pressures.  It was either registering really high, or not at all.

It was at this point that the Rapid Response was called on Nathan.   This is one step away from a "Code Blue" ...   There were LITERALLY 8 people other than myself and Nate in the room at this point.

I sat on the bed ...  as all these people were all around Nathan saying this saying that, could it be, might it be, they didn't kick me out of the room, if they had - I would have been crushed.  I would have been panicked.  One person was saying it was absolutely not because of the antibiotic (Bactrum) ....  and I kept going over the two time lines in my head, and I couldn't see why not.

I kept saying "this is basically what happened a few days ago" and kept being told it wasn't because of the Bactrum.

The Risk Nurse (the ICU nurse) hung back after most of the others had walked out of the room to take the discussion somewhere else...

I sat there, and I told her.....   My gut says it's the meds.  I don't want him to be given anymore Bactrum.  She nodded as she listened to me.  I told her - the time line isn't the same, but it's the same stuff happening....

Thursday Night - Friday Morning: given his nightly meds around 9:30-10 PM (including the Bactrum the ER had sent us home with)... he started to throw up at 10:45 PM and was throwing up until almost 3 AM .... when I woke up at 7:30 - his skin was red from head to foot, the whites of his eyes were red, and his temp was 105.  We immediately scooped him up and went to the ER.   His BP was low, his heart rate was up, his respiratory was rapid ... His kidneys started to fail, he had sepsis and we were taken from our home hospital ER to the ER in Seattle Children's by ambulance - lights & sirens all the way.

Sunday Night - Monday Morning:  He was given his meds at 9 PM (including the Bactrum) ... he almost immediately started getting sick.  It was 15 minutes later and he was screaming he needed to poop, he needed to throw up, he was getting red again, his temp was going up , he started throwing up, his heart rate started to spike, his skin was turning red, the whites of his eyes were turning red, everything was happening all at once.

I saw the connection.   The Risk Nurse apparently did too -  because she told me she agreed with me.  Apparently a friend of her's, her son had a Bactrum allergy that presented much like Nathan's - only they hadn't gotten him into the ER in time, and he ended up dying.  She had done a lot of research on it, so she knew the way it could present - including a fever.  Which I didn't think an allergic reaction would present that way ...

I felt like she was on my side.  But also understood that I didn't care if I was right or not, as long as Nate was okay.

They ended up calling a rapid response on him, there were literally 8 people in here besides me at one point.... He's okay, sick.. But okay
However - at this point Nate was NOT okay.  Not even a little.

During the whole Rapid Response, they put another IV in his left hand, so he has two IV lines again.  They were pumping him FULL of fluids again ... and bolus after bolus after bolus.  This wasn't helping his heart rate, his blood pressure, nothing.....

Nathan is a ROCK STAR!!! That's all I can say. And I managed to NOT burst into tears and lose my shit. Just sayin.....

Things not to say during a rapid response "I think the max room limit has been reached" cuz.... Yeah, I did. Oh, and, "We could have a dance party" .... At least someone responded to that one that we just needed a disco ball.

He - at this point, is on two different plunger IV's and two bags of fluid ...   his heart rates are hitting the HIGH 180's .....

3:45 AM ... They just made the call that Nathan is going up to the PICU

Just before the PICU news.... ”you got this! My body betrays me, no more all night or 24 hr parties for me" rolls over to sleep. Up 5 minutes later when she hears..."ummm...yeah, we're going to transfer him upstairs" "upstairs" is in reference to ICU

Ummmmmm..... ^^^^ What the hell is that status.  Okay, I totally remember the "3:45 AM ... going to the PICU" thing .... but....  WTH is that second one???  I don't even remember posting that???   I don't even understand it????   I was apparently exhausted.   And my brain was sludge.   It makes ... no... sense.   ::: shakes head :::

So we very quickly had to pack up our room and go upstairs.  This is Nathan's ICU room.

This is the view from his room.  His room has AMAZING floor to ceiling windows (that didn't make me height phobic at all, normally it would) ..... but the view was AMAZEBALLS ... about the only good thing about the room .... although the staff was great too.

My RED RED little man in the PICU.

The top picture (below) is when they were trying to place a catheter - at this point I completely passed out.  The staff in the PICU were told they could do the cath - by Urology.  DB says that they tried to do the catheter themselves, twice, before calling Urology to come do it because they couldn't.  Urology said with his hypospadious - his urethra was narrow and he had a lot of scar tissue.  So they had a hard time getting it in.   The second pic is when I woke up a couple hours after I fell asleep.  I slept through the Urologist getting it in. I was told he had literally just left when I woke up.

Why did they place a catheter?  He was retaining fluid, he couldn't seem to get it all out.  When they scanned him, he had just peed and he still had about 200 ml in his bladder.  They didn't know if it was because of the UTI being to painful to pee, or if it was because of his Sepsis.

Pretty much at the point that I woke up, they were getting ready to place his PICC line which we had been warned about - It had to be a sterile environment - because I wasn't up at his bedside, I only had to wear a mask....  DB was up at his bedside, he had to wear a mask, and a hair thing ...

Facebook Status: 9:13 AM
Monday Morning Update: Nathan went down hill fast. He was up and walking yesterday. He ate something substacial finally (half a grilled cheese sandwich, some chocolate milk) ... They were switching him to oral antibiotics... I was so excited thinking we might go home today or tomorrow..... And then it all happened. 9 PM he got his meds through his tube. Including the new antibiotic Bactrum ... In 15 to 30 min he was screaming he hurt all over. He was really itchy. Then he was throwing up. Shaking out of control. Heart rate was up to 180, blood pressure was low, but he was still being his fiery self when ever anyone touched him. Then they called the rapid response. At one time there were 8 people other than myself on his half of the room. PICU had signed off on him early Sunday morning because he was doing so well and improving. Now they were back involved in his case. In a couple hours, so many doctors and nurses in and out, concerns over this and that.... has he? is he? does he? Felt like it was spiraling out of control. Called Dennis. When he got here, they decided to move him to the PICU ...ASAP..... So about 4:30 AM we moved from our nice cozy room to the ICU room. It's not cozy. Everything was going on. It was decided he wasn't voiding all the way (he was retaining urine, something I suspected) .... Catheter was placed. They have him on epinephrine to get his blood pressure to rise. It wasn't doing much. They gave him more, put him on a drip, still not helping much. I passed out..... Exhausted. Just woke up and he has severe sepsis again. They are talking about maybe putting him on oxygen.... A cannula I think, because he is acting like it's difficult to breath but his O2 is okay. He has some gram negative rod bacteria, they suspect Ecoli, but that is a guess at this point. They are putting in a central PICC line right now. He is swelling up because of all the fluids they are pumping in him. He is red again, the whites of his eyes are reddish. Fever is back. It's going to be a long day. Watching him walk yesterday, this is not what I expected for today.

My poor red swollen baby ....  this is right after the PICC line was placed......   the IV in his right hand....

If you don't know what a PICC line is.....
  1. A peripherally inserted central catheter (PICC or PICline) is a form of intravenous access that can be used for a prolonged period of time (e.g. for long chemotherapy regimens, extended antibiotic therapy, or total parenteral nutrition).

And the PICC line in his left arm.

He is all swollen again - because of all the fluids they pump into him in hopes to bring his blood pressure up, which didn't work.  So they started to pump epinephrine into him, which is not something you want to put in the small veins that IVs are placed in, it hurts and it's not good, it will destroy the veins.  So they wanted to get the PICC line in to get him the meds to support him until he could take back over himself.

The guide lines for his blood pressure was that they wanted his top number to be over 80 and his bottom number over 40 ...  his blood pressure is in the PINK on the bottom.  The heart rate is the green, which is high in all of these .... his respiratory rate is also high in all of these, and that is the white number.  The teal number is his O2 stats ....  which is great.

The TV's up in the ICU are set up as "Get Well Town" where there is a plane pulling a banner with his name on it.  Also (on the bottom) gives the population of Get Well Town which was 134...  lol...  I made a big deal over this to Nathan, trying to make him feel special.  Anyway - these TV's that have this on it have a bunch of pre-loaded movies and other stuff.  We watched FROZEN ....  a lot.....  a.l.o.t. ......

After they placed the PICC line, they had to do an X-Ray to make sure it was placed in the right spot.  Because they can't use it until they know it's in the right spot.   You can see their portable X-Ray machines have amazing stickers all over ....  Nathan noticed this too... he said "I like it" .. lol...

This X-ray (bottom right pic has his X-Ray) ...  revealed that not only had the line coiled but it also needed to be pulled out about about 6 cm ....  they ended up pulling it out about 7cm....

In the meantime, Nathan got a Gift Certificate for the Gift Shop, so I ran down there to get him a stuffy, he wanted something cuddly for sure.   So I looked and looked and finally settled on this guy.  Nathan named him Ben.  He also got a sensory toy and some slippers.

I got back and they were doing the 2nd X-ray on him to see if that 7cm they did put it in the right spot.  Nathan - at this point, could not sit up by himself or nothing.  He was just baby jello at this point.

So the 2nd X-Ray showed that it still wasn't in the right spot, they needed to pull it out 2 more cm ... so they did..... and they repeated an X-ray for the 3rd time, and needed to pull it out 2 more cm...  so that was a total of 11 cm .... each time they had to pull it out more they had to get the area sterile and pull off the tape that was holding it all in place, and pull it out a little, and put it all back together... and every time it hurt him ..  the first time, when they pulled out the 7cm he started bleeding because I guess the catheter that they place in the vein is bigger at the top than the bottom so the vein was actually open around the tubing and so he was bleeding around it - so every time they had to redo it and undress it and redress it - they were disturbing that blood flow again and again ...

Also, they had to keep switching the epinephrine drip from one IV to the other - because Nathan could only take it for so long before the pain of it destroying his little veins was too much for him and he was crying ....

I have to say something ....  at this point, this was not only hard on Nathan - but also his two nurses.  I kid you not... it was visually upsetting the nurses.  They played it off like it was no big deal, but this wasn't the norm.  One of the nurses was told to go on break because it upset her so much.  I think it caused a bit of conflict between the two nurses, that's what it seemed, but they both kept Nathan their priority.

Finally they got it in a place that was acceptable.

Once the PICC line was confirmed that it was in a good spot, they ended up calling the IV team to come look at his IV in his hand because it was hurting a lot.  It was on the brink of blowing.  So they took it out and ended up putting an IV in his foot.  This is the 5th IV he's had placed (not counting the PICC line, which would make it the 6th! And he's had two IV lines going at all times)

 They called Child Life and told them that Nathan deserved some prizes for being such a Rock Star.  Child Life thought it was important that the two nurses gave him the prizes for being so AWESOME...  well one of the nurses gave it to him.  He got a little "hou'nd dog" and a Mario ,,,  and one of those fuzzy black poster thing to color.

After they got the PICC line in - they started to give him both the drip of epinephrine and norepinephrine  and his blood pressure wasn't responding a lot but it was getting better... they wanted the upper number above 80 lower number above 40 and the mapping number (in parentheses) to be above 40 ...  his blood pressure would get better, than worse, than better, than worse.... 27 diastolic is NOT GOOD.  To put this all in perspective, a "normal" blood pressure for Nathan would be somewhere between 94-119 systolic (upper number) and 56-83 diastolic (bottom number) ... so even though his systolic number picked up, his diastolic wasn't doing all that much better.

Also a lot of his redness went away but he seemed to have this redness around his eyes that triangled down his cheek.   And the right side of his face was more swollen than the left.

Finally - FINALLY his heart rate is better, his respiratory is still a little high but definitely better... and his blood pressure is good again!!

I ended up falling asleep in the chair in the room.  There was a small one person bench/couch that could be slept on - and a reclining chair - that didn't STAY reclined... the back of the chair.  The foot rest part of it popped out and stayed just fine but the back, wouldn't stay in the reclined position.  Finally around 2 AM I figured I could pop my butt in the corner just right and it would help it stay back.

Continue onto ......  The Monkey In The Asylum *Day 7* On the Roller-coaster

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