Tuesday, May 12, 2015

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

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


This kid, man....  he is something special.  I can't even BEGIN to express how amazing this kid is.  I can't.  All the staff, everyone who meets him, comments on how much of a Rock Star Super Nathan is.  Serious - Rock Star!  Nathan has some pretty bad anxiety issues, but when he's in the hospital - he manages to draw from his Super Hero Nathan powers and even though he's scared, hurting, whatever, he breaths through stuff, and distracts himself, he complains but he listens too.  Everyone he meets agree how much of a Rock Star he is.

This was taken before I fell asleep .... in the wee hours of the morning.

Woke up around 6:30 .... heart rate and respiratory rate are a bit high still but BP is a smidgen better .... At this point he had been off both epinephrine for about half an hour.  They had stopped it at about 6 AM....

Just a picture to show all those tubes and wires he was connected to.

Nathan's watching cartoons.  With his buddies the How'nd dog ...  his Terrydacktal and Ben the long ear bear... lol..

I took these as impact pictures.   To show the wires and tubes and all that ... everything he was hooked up to.  So much he needed TWO IV Computers ... He had maintained two IV's that were both used pretty much the whole hospital stay other then on Sunday when he was finally starting to do better.

I wanted the older kids at home to really understand how serious things were.  I tried not to focus on the seriousness but I have to honestly say that .... it was pretty freaking serious.  I didn't even let myself go there until after Nathan came home.   But honestly - I think the pictures below really hit home.

But I can't be serious.  I deal with stress by joking around and trying to keep laughter going.  I had my moments though.  DB went down to the chapel several times to pray, he didn't tell me that until we were home with Nathan.


Okay so I know that everyone has been waiting for an update on Nathan since I haven't updated in the last 24 hours. I apologize for this. Things have been a bit of a crazy roller coaster. I also apologize to a few of you who have messaged me that I haven't had the chance to get back to. I have been trying to get blogs written about everything that's been going on. Now.... the update....
So we are still in the ICU and will be here until Nathan's blood pressure can be managed on it's own. They have had him on different forms of epinephrine because his blood pressure is very low and they are trying to make it stable. They weaned him off all the blood pressure meds by 6 AM this morning thinking that he would stabilize and he is not stabilizing. They gave him some fluids in hopes that THAT would help stabilize him and that didn't work either so now they are going to be putting him back on one of the epinephrines through his PICC line.
His Epididymitis, UTI and the Gram Negative Rod Bacteria (which they confirmed was Ecoli, which they say he has many reasons why he's susceptible to it) are all better. His white blood cell count is normal now. So the infection is completely under control, but his blood pressure issues and heart rate and all that is being caused by something else. They are doing some consults on that. Originally they thought it was an allergic reaction to the new antibiotic that he was on, but it is obviously not the case.
Yesterday was rather tough one.... he was being poked and prodded most the morning and early afternoon yesterday... First they tried to place a catheter because he was retaining urine, and couldn't seem to pee it all out. They ended up having to call in the Urologist because they couldn't get it in - so the Urologist came up and he said he had a lot of scar tissue and his urethra was really narrow. So they are definitely keeping the catheter for several more days. Then we have to discuss what we will do after that if he's still retaining urine. He may need a shunt type thing in his belly to drain out the urine.
They also placed a PICC line which is an IV type line that is threaded to the heart. So it's a more direct and long term IV line. They placed his yesterday, did an x-ray to make sure it was placed right, found out it was coiled and needed to be pulled back some, so they pulled it back 7 cm and then another x-ray, they had to pull it back another 3 cm another x-ray, and then had to pull it back another couple of cm. This, I might say - caused his two nurses to be really upset. They would have to get sterile each time have to pull up the tape each time, re-secure it and tape it back up and do it all over again, and even though Nathan is a major trooper, this hurt him and the nurses were literally shaken by having to do this. They did NOT do an X-ray the last time but they were able to draw blood from it initially and it's working great. However, overnight they tried to draw some blood from him, from the PICC line and couldn't. So they said that happens from time to time, but they are still confident it's in the right spot. They think it's that the catheter is up against the wall of his vein or something. Sometimes there is a sweet spot the arm has to be in - in order to get blood, and they couldn't find that "sweet spot" last night.
His heart rate has been rapid, his respiratory rate has been rapid, his blood pressure has been low. They had to put him on two different types of epinephrine yesterday to get his blood pressure up, then they started to wean him off and by 6 AM this morning he was off. Since then his blood pressure had dived again, and his heart rate is up again - although not as bad as it was.
Endocrine is involved here now because they are thinking there might be something involving his brain - as to why he's having the issues he is, as in the not maintaining his blood pressure especially - and he's peeing a lot - like - way more then he should be....
They are going to be "replacing his urine" and what that means is what he pees out they are going to be replacing via fluids through his IV or PICC line.
He is very weak. It saddens me so much because - I had JUST gotten him up and walking literally an hour and a half - two hours  before he went south. Part of me wonders if it was me pushing him too hard. I know he is so weak and so spent right now. He's only awake for small amounts of time. He's awake a little more every day.
Right now he's on a lot of fluids, steroids, norepinephrine, IV antibiotics, and some other stuff.... He is a sick little boy. I am pretty sure we will be here until next weekend if not longer. 

The boy is eating JELLO!!!  Woot!!  It took him awhile, he only ate it 2 or 3 bites at a time... but he finished the whole cup.  He took a few bites of another one too.  He tried some Chicken Noodle Soup....  String Cheese.... Crackers and Cheese ....  and then his dinner came which he barely touched.   But he ate a lot.  He ate some fruit off his dinner tray, strawberries, and that's about it.

He played with the super awesome sensory toy ....  which is fantastic because he's INTERESTED in doing something other than sleeping or zoning out to a movie...

It's started raining .... which I love watching the rain.  Nathan couldn't see ....

He wanted to see so I took pictures for him and showed him.  Then he was just not feeling well.

He's having a very hard time maintaining his blood pressure, so they put him on the norepinephrine for a few hours, and weaned him off again ....

Ooooooh Russell Wilson is in the building..... he visits random kids ... just wanders around... I guess he walked past the ICU ... probably no Russell for us. ‪#‎SeattleChildrens‬

Daddy sitting by Nathan's bedside....

He is so worn out but he's staying awake for longer, which is great.

Child Life came up and they let him "barrow" a iPad while he was in the hospital.  This gave him something to distract him from the pain he's been in, plus he was just tickled ..... not that you can tell, but he was really happy....

Sunset from the ICU room....

Feeling meh ..... his numbers are doing better - yay!!

Continue to:  The Monkey In The Asylum *Day 8* Exhaustion

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