Apr 7, 2013

Day in the life ... NOT

March 28, 2013

One of the most difficult times of being a mother is when we are 99% sure we’re right.  You see, when I’m 100% convinced, I’m a bulldog (yet try to stay calm and kind).  But when there is that doubt, however slight, it nags on my psyche in a detrimental way. 
Photo: "Mom, it's raining. I have an umbrella!" said Manny just now
Manny said, "Mom, it's raining.  I have an umbrella!"

What am I talking about?  Remember back when Manny was in the hospital in August with Human Metapneumo Virus?  Well, it was by far the worst he’d ever been sick with respiratory issues.  His heart rate through the roof, his breathing rate through the roof, etc.  I knew with 99% certainty that he was in trouble, needed to be on bipap and put in the ICU.  But I couldn’t convince anyone else of that.  My regular peeps were gone and so no one was there that knew to trust my rather accurate “gut”.  Even the ICU doctor wasn’t convinced I was right and he ended up even sicker. 

In September, he got similar symptoms again.  But this time, I was 100% sure.  I KNEW.  I got different results.  I didn’t hesitate. 

I liken it to being on a roadtrip to a new destination where I’ve never been.  I can see the signs, I can guestimate, but I don’t know for sure.  But once I’ve been on a road before, I know where all the gas stations are, the potholes, etc. 

Currently, Manny is sick again.  His labs are “off”.  Today, the (new) GI had her nurse ask me if I’d consider trailing feeds again?  Well … I’ve been on this road 1000 times!  Each time it ends the same way.  I’m not real keen on getting back on this road again.  If you’ve been reading this blog at all … you’re probably not real keen on it either! 

I wanted to tell the nurse HECK no.  (OK, that’s the “edited version” of what I thought! LOL)  But instead I told her I would consider it if I could have a long, detailed conversation with the GI about how to protect him through the trials.  In my head I thought this would just buy me some time.  (I have an appointment with the GI next Wednesday.) 

After I hung up, I realized the best way to handle it.  On Wednesday, I will see if she brings it up.  If she does, then I will ask her to outline her plan.  I will have on hand the document I will create that outlines all his previous feeding trials and results.  (I’m assuming what she will suggest will have already been tried!)  And if she pushes for it, rather than being the resistant one who is non compliant … I will say she needs the Pulmonologist clearance prior to the feeding trial.  That he will need to be on board and have a say of when to pull the plug on the experiment, etc.  I know good and well that the Pulmonologist will have a proverbial cow about even talking about it! Then it’s a doctor saying no and not just me. 

But the bottom line is … I have doubt.  I’m 100% percent sure this will be a bad idea to trial feeds.  He’ll end up in the hospital with respiratory distress in no time.  That’s not the doubt.  The question in my head is … at what cost?  And what if I’m wrong? 

But that’s my decision.  No feeds without a clearer plan. 

April 7 …

Fast forward.  Manny’s labs on April 1 were back to “normal” again.  The liver enzymes (the ones the GI freaked out about) were back to his baseline and even slightly lower.  Like I had thought, it was a fluke, not the beginnings of liver failure.  I was right to say no to the feeds. 

April 3 is when I went back to the GI and even though the labs were back fine, she was still hinting around about the feeds.  I get it.  Really do!  I mean, a GI’s job is to get the digestive tract thing going/working. 

What she doesn’t know is the first hand hell that we experience every time in ever increasing horrors.  She has never been there to see him gasping for breath or his heart rate near 300.  She’s never heard him begging for help as he basically drowns in his own secretions. 

We instead discussed how we could get to a mitochondrial doctor.  Maybe they have some suggestions and places to start!  Perhaps they could help guide the GI portion of his care in the future.  So we’re working on trying to locate the right doctor and right direction to head. 

Meanwhile, Manny’s been sick since adenoid surgery.  I say “adenoid” because … did you know?  There is only one adenoid?  People say they had their adenoids taken out but really it’s just one big one?  Just a little factoid for you. 

Anyway, once that came out, he has had troubles ever since.  Everything has settled in his tonsils and is blocking his airway.  He’s having trouble breathing.  Needing oxygen.  It’s quite sad and scary.  Then his tonsils looked like strep and he got his first ear infection so they put him on an antibiotic that went in his feeding tube.  That had no effect.  So we had to get the IV version.  (Long story short, this shouldn’t take an act of congress to get but it does for some reason.)  But we got it. 

Another thing happened one day during all of this … not sure why but Manny got choked and couldn’t breathe.  It was quite scary.  I had been in the kitchen cooking and then stepped out for a second and the kids yelled for me.  I ran and saw he wasn’t breathing at all.  I started praying and trying to clear his airway.  Then I had one kid go run get Dan in his office.  He stayed with Manny and prayed for him while I ran to my bedroom for some supplies.  I was eventually able to clear it and all was well.  But those were a few scary minutes.  I still don’t know what happened but man!  Those episodes seem to take years off your life.  (I hope not!) 

And finally about Manny … he still has a horrible diaper area rash.  They think staph because of the way it responds to antibiotics but it’s never been specifically swabbed.  As soon as the antibiotics are done, it comes right back.  I won’t be overly descriptive but suffice to say … it’s a rash that’s come and gone since Thanksgiving and it bleeds it’s so bad.  He NEVER complains about it! Poor guy.
Here's a link of him waiting in the van at the doctor's office ... during this time, he had a fever, tonsilitis, an ear infection and a bleeding staph sore.  Yet  THIS is what he's like ...  (It's worth checking out, trust me!)


Now … on to a completely new topic …

On Friday, March 29, Luke (9) started acting a little “off”.  It wasn’t super noticeable but just a little off.  Low key.  Low energy.  Low appetite. Headache, etc.  Saturday it was more noticeable.  Sunday he got a low grade fever.  In the middle of the night he came in saying, “I’m hot”.  Luke is sometimes … uh, how do I put it … overly dramatic.  So at 3 am, I wasn’t all that impressed with that sentence.  I told him to go get the thermometer. 

“103.1” he says.  To which I bolted out of bed and got that kid some medicine. 

Monday morning first thing we went to the Urgent care (out pediatrician was out sick herself).  They diagnosed him with strep and a bad sinus infection.  He had one small white spot on the left tonsil.  Started him on Amoxicillin.  I thought it was all over.  Strep is usually much much better 24 hours after starting antibiotics. 

From Monday to Thursday, his fever kept going up.  At one point it was over 105.  He was having some slight airway issues (on top of his asthma which got triggered). 

Thursday afternoon he said his throat was hurting more than ever.  So I looked in his throat.  Uh … it was disgusting!  Both tonsils were COVERED in white nastiness and they were both huge.  His temp was still over 104.  The Doctor’s office is closed on Thursday afternoons so back to the Urgent Care we went.  (3 times in one week, twice with Luke and once with Manny.  And we hadn’t been there in over a year prior to that!)
Photo: Luke 104.9. "Told you I was hot!"
As I took this picture and this temperature, he said, "I TOLD you I was hot!" Gotta love 9 year old boys!

It was a different doctor and he agreed that the antibiotic should have taken care of strep but those persistent high fevers and continued worsening of the tonsils concerned him too.  He gave us a new antibiotic, Zithromax, just in case.  He also did a chest xray as he heard a little something in the middle lobe.  Chest xray wasn’t all that impressive but as I know (and he explained), chest xrays “lag” behind. 
Here's when it's NOT so bad!

By Friday evening, (the 24 hour mark of the new antibiotic), he was starting to feel a bit better.  The fever was finally below 101.  He was hungry for the first time in a week.  (Not much but a little.) 

Just for fun, as I was getting the kids ready for bed, I noticed Sam (11) and his cheeks looked a bit flushed.  I took him to the light and noticed silver dollar sized marks on both cheeks that were red like a sunburn color but there were tiny raised dots there too.  Some kind of strange rash!  I checked him from head to toe at that point and found nothing else strange.  (I then thoroughly checked Jacob, Kaley and Zoe … thankfully nothing out of the ordinary!) 

On Saturday, Luke started coughing up “chunks”.  I have no way to describe these things.  Bigger than peas but smaller than dimes.  Looked like his skin color but was covered in blood.  Not massive amounts of blood, but super scary looking.  Meanwhile, he still was sounding like wheezing to me.  He was doing round the clock nebulizer treatments.  They seemed to help for a little bit but not for long. 

Then Saturday afternoon, he came to me a bit freaked out … his lips were very, very swollen!  I immediately thought about medications.  He’d been on the new med for several days by now and it is taken only once a day – at night.  So I doubted it was this.  But I never did find the source.  It took HOURS for his lips to look back to normal.  In the meantime, I checked his tongue and airway… all that looked just fine. 

Sunday, he’s having the darndest time with coughing.  He’s still coughing up some chunks, just less blood now.  But his cough is uncontrollable unless he’s during a nebulizer treatment.  He’s scheduled to see his regular doctor first thing Monday morning to help us with the big picture.  He no longer has any fever but the tonsils still are quite “rough” looking. 

So that’s part of my update.  You know, just a regular “day in the life” type of stuff.  Ha. 

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