Aug 24, 2012

Back to school

Went to update the latest on how things were going since being home and realized I never posted the last update from the hospital ... so here is link now: 

http://www.destinyshouse.com/hospital4.html

We got home and all was well.  Manny's been doing remarkably well for the week home.  He does have a very very strange rash and not sure what that is about.  I thought I had it under control but now it's out of control again.  Went to the Doctor yesterday and she gave him a new prescription strength steroid cream to use on it.  Hope it helps.  Poor thing wants to rip his skin off it's that itchy ... and it's down one leg so he can reach it. 

He has a small cough still too.  But that's it.  Truly, truly amazing how quickly he turned around!  He was one sick little dude and then VOILA!  Like a light switch.  He seems no worse for the wear.  Me?  Well, that's another story. 

Meanwhile the kids went back to school on Tuesday.  Jacob and Kaley are homeschooled (for lack of a decent middle school around here) and are in grades 8 and 7.  Sam, Luke and Zoe go to the local public school that we love.  Grades 5,4,2.  Sam has the teacher he and Luke both had for 2nd grade.  Luke has the teacher that Sam and Kaley had for 4th grade.  And Zoe has the Mom of one of her best friends from last year.  Manny is doing some preschool curriculum at home just because his brain is so sharp that he gets bored easily if we don't keep it fed.  So we have almost a week under our belts and all is going well. 


Yesterday, I also took Kaley to the doctor.  She is starting on this strange swelling on her lip.  When she was 3, she was diagnosed with a condition called PFAPA.  They said it would resolve until she didn't have it any more and that would end about age 9 or so.  Sure enough, it's been several years since we have seen a flare up.  So it was strange to see it back.  High dose course of prednisone and all will be good as new. 

And yesterday we also had a nephrology appointment for Jacob.  He has FSGS kidney disease.  So the blood and urine tests are decent.  If someone without FSGS had these labs, doctors would be greatly concerned,  His liver function is elevated.  He's spilling proteins, his creatine/protein ratio is out of control.  BUT ... compared to other kids with FSGS, his labs are stable and that isn't what was expected. 

She said that the worst demographic constellation for prognosis is ... male, Black, teenager.  And Jacob, of course, is all of those.  She said that 2 years ago when we first met, she held little to no hope of him being off dialysis for more than a year, maybe two.  And here we are 2 years later, BETTER than he was 2 years ago.  Why?  Couple of things.  First, we're praying hard as are many people around the world.  Secondly, we're trying a few alternative/homeopathic/herbal things that seem to be working.  She said we should just be thankful.  I asked about if they ever use the term remission or can you ever be without FGSG and she said no but that he would be what is called "Controlled"  (in other words, stable labs for the past year).  And she is thrilled and optimistic about his future.  I also asked if one goes from stable to crash and she said not typically, that we'd see decline that could be quick but it doesn't just have the bottom fall out. 

So for all of those praying for Jacob, keep it up.  It's working.  He has most of his energy like any other teenage boy.  He is starting to believe he could do extra curricular activities again.  And things are feeling a bit hopeful. 

I'm sure there are more things to update but that's what I can remember off the top of my head. 

Thanks for supporting us in prayer.  We truly continue to believe our family is held together by prayers~!! 

Aug 15, 2012

Aug 13, 2012

Hospital 2

Next blog:

http://www.destinyshouse.com/hospital2.html

Hospital 1

Hey... The hospital is blocking blogger so I have a backup ... Follow this link to read it

Http://www.destinyshouse.com/hospital1.html

Aug 10, 2012

HMV

I was without my computer for a few days so now I have the job of trying to catch up on the latest with Manny. 

Saturday he got a fever.  Sunday took him to the local ER.  (I chose that one because they don't admit him with fevers versus the children's hospital which does.  Why? Because we were scheduled to leave for Boston Tuesday morning.)  Labs looked semi normal.  Gave us antibiotics and sent us home. 

Sunday night he was decent that night.  By late Monday, he had just a low grade fever.  By the time he went to bed, I was still planning to leave for Boston Tuesday morning.  (Was due to leave the house at 5:30am.)  In the middle of the night, I repositioned him and he was BURNING HOT.  I got a temp of 105.5  Anything over 1004 for him is considered a fever due to the central line.  Gave him Tylenol and Motrin and did cooling techniques.

I got dressed and headed to the ER.  Took my bag that I'd packed for the trip with me.  Called the airlines to postpone the tickets. 

Got to the ER and temp was 105.6  He had no other symptoms.  Funny story ... the ER doc said what all was going to be happening and he rattled it off, "Blood tests, cultures, urinalysis ..." and before another word was spoken, Manny yelled, "No touch my pee pee!"  Apparently, he knows what a urinalysis is!  Smart boy. 

The ER was kinda traumatic for him.  First the catheter for the urinalysis.  (His second in 2 days!) Then, they couldn't get a peripheral  IV in but kept trying.  I asked if we could wait for IV team since they know his veins well.  But they wanted to start the antibiotics immediately and they couldn't do that until they drew the peripheral blood culture.  Eventually they got it.  But the whole time he was yelling, "Stop doing that" and "I soooo sad!" Those are new phrases for him.  Broke my heart. 

After several hours in the ER we were admitted to the floor.  We went to the 8th floor of the main hospital.  It's a children's floor but not the normal children's hospital.  (Turns out they're doing construction on the Children's hospital starting monday and all their patients/staff are going to a secondary wing on the 8th floor.) 

I have enjoyed going to the same floor over and over because the same staff take care of him so they get to know what we like/dislike, need, etc.  It's very helpful to not have to "fight" for anything.  But I guess I'd not been thankful enough for that.  So I was starting at square one.  They were doing rectal temps.  What the heck?  Why?  They say it's most accurate.  I agreed but said, "Do you do them on 17 year olds?" And the answer was of course not.  What about a 7 year old?  No.  Then why a 3 year old who can do accurate oral temps?  They would not change it until I got it changed in the orders.  So poor baby endured 24 hours of rectal temps unnecessarily.  It was ridiculous. 

Then they weighed him.  On a baby scale.  Why? Because he can't stand.  And then proceeded to take off his diaper since people on the baby scale have to be naked.  Again, I asked at what point they stop stripping the kids naked for weights.  If they can stand, they can stop at 12 months.  SERIOUSLY?  You want my three year old to go naked because he can't stand?  So I ask how they weigh 17 years who can't stand? 

Why do kids with disabilities get treated with less dignity?  That's not their intention but that's the result! Sooo frustrating.  This kind of stuff could turn me into an activist!

Again, had to get it in the orders that he could leave his diaper on!  So stupid.  And madening. I feel if you can say, "NO take my diaper" that you should get to KEEP your diaper.  So now he can.  :)

He eventually started showing signs of pneumonia (cough, congestion).  But this is something he developed after the fever.  We were doing tylenol/motrin around the clock and he was still having fevers over 101.  It just wasn't bringing it down.  He was getting more and more tired. 

By Thursday I felt he was needing to head to the ICU.  He was fatiguing and in repiratory distress and generally declining.  The Pulmonologist was consulted and he immediately ordered a lot of new tests and medicines. 

One treatment was the metineb.  The one I affectionately call "waterboarding".  He gets it every 3 hours, lasts about 20 minutes and it takes him almost an hour to stop crying about it after if he's awake.  This is done around the clock so he's getting very tired.  It puts the medicines right in his lungs where he can use them so I think it's worth it in the long run.  It makes this slow then fast "puffing" noise so the respiratory therapists call it the "Choo Choo Train".  Manny screams every time he sees the RT coming, "No Train!"

Thursday afternoon, we got the results back finally.  He is positive with Human Metapneumovirus or HMV.  They call it "RSV's evil twin".  It's a spectrum ... Some kids get the basic "Cold" symptoms and some kids get ventilated.  And everything in between.  Manny is considered on the moderate to severe side with the symptoms so far.  This was good news that it wasn't his central line.  (That's AMAZING!  That's what everyone thought it was and I said it was viral. Just had to throw that tid bit in for the record.)  But it's still not a good diagnosis. 

Meanwhile, his labs are very shakey.  His WBC are bottomed out.  (Means he's having a hard time fighting the infection.)  There are signs of bone marrow involvement ... which means he's throwing everything but the kitchen sink to fight this but he's losing ground.  His platelets are very low and dropping (not sure why but more about that later). 

His xray from Thursday showed infiltrates and atelectasis.  Fancy ways of saying beginning pneumonia and the airsacs are collapsing in part of his lung.  This explains why he's working so hard to breathe. 

Thursday night I just didn't have a good feeling.  The respiratory therapist put oxygen on him even though his oxygen level was above the magic 92.  It didn't seem to help though in any way.  He was still doing nasal flaring and retracting as well as respiratory rate near 70.  Those are all signs of respiratory distress.  He's working VERY VERY hard for every breath.  The question is ... how long can he keep that up before he collapses to exhaustion? 

About 9pm, the charge nurse had to come in and do a small procedure on Manny.  I've met her before but it's been a LONG Time so we were catching up.  We chatted and laughed and then she left.  Little did I know this would be important a few hours later.

About midnight I video taped him doing all this strange breathing and then walked to the nurses station to show it to our nurse.  She wasn't there but the charge nurse was.  She asked if she could help.  So I showed her the video.  I asked if I should be concerned or not.  She told me that as a nurse of 30 years, SHE was worried.  She followed me back to the room to see him herself.  And she got things moving. 

They called the on call doctor (not my usual one) and she suggested several things.  We tried them over the next little bit.  One thing included back to back "Choo Choo" treatments.  But about 1/2 wasy through the first set, the RT heard him gurgling.  She stopped the procedure to suction him and he was bleeding.  Not a little bit of blood either.  She started looking for the source.  Turns out it was his nose.  One of the procedures had barely bumped his nose and because his platelets are soooo low, he started bleeding.  He then started choking/trying not to aspirate the blood. And we still had 1 1/2 treatments to go.  (That was long and painful.) 

They took him off direct oxygen and put him on "Optiflow" which has more options of control of  rate and flow and oxygenation.  He's on VERY little oxygen at this point.  But still breathing very fast and shallow.

Next a chest xray was ordered with STAT results.  Showed increased inflammation just since yesterday.  By now, the on call doctor was concerned.  His respiratory rate was still about 70 (normal is 20 or less).  And she was out of options.  So they called ICU.  They came to examine him and immediately said they'd take him.  And we started the process of moving over.

By this time it was 6am and I had been up all night (got less than an hour sleep in the middle of that).  He's exhausted too.  The whole way on the transport over he just asked to go back to sleep!

They adjusted us in nicely and he was back to sleep.  He's still on the optiflow.  His respiration rate is still about 55 but slightly better.  He's still retracting.  If he can just sleep and rest and get caught up, he has a shot at getting over this quickly.  He just needs more support than the regular unit can handle.  Here, there is one nurse for 2 kids.  There it's 1 for 5 kids. 

So now we wait for the ER doc to see what adjustments she wants to make.  She was the same one that helped when he was admitted as non-responsive and it turned out to be his gall bladder.  They have a bit of his history so that helps. 

I'll post this now so that I can get it out (It's already long and laborious.)  And I'll start on the new blog. 

Thanks for the prayers!