Tuesday, April 16, 2013

Six Years Ago ..... I almost lost my son....

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Every mother's worst nightmare ...  having their child die before their time.  Sadly - so many parents are faced with this exact situation for so many reasons ... medical conditions ...  accidents ... heartless acts by others....

Here I am blessed with my four babies, and as a mom who deals with "special needs" on a daily 24/7, 365 day basis ... for the rest of my life ...  I truly know how blessed I am with them every day.

Six years ago today ....  I had to fight for my son.  I was 9 months pregnant with Nathan.  Our focus was on the upcoming birth.  Noah had been sick for several days.  He had been running a high fever (104) and throwing up, he had been listless for days.  He had been in tears about the pain in his right side.  We took him into the local ER and they had given him to some P.A. (Physician's Assistant - not a Doctor.)

When we had taken him in over the weekend, the nurse had Noah give a urine sample right away cuz he needed to pee and just in case they needed it.  I remember thinking it was really dark and wondering how dehydrated he was.

Noah gets really wigged out when at the doctors.  He's been traumatized with everything he's been through.  To this day - he still has major anxiety ...  every time it's mentioned that HE has a doctors appointment - it's twenty questions on what they will do, who, what, where, and if needles are going to be involved.  Seriously it's twenty minutes at a time of the same question and reassuring him there won't be needles or having to do the harder thing and tell him the truth that we don't know - and we try to be honest with him.  If we're pretty sure there won't be needles - we will reassure him - but sometimes they throw us a curve ball.  So a lot of the time, I say ... I'm not sure.  It's gotten to the point that we don't tell him until we absolutely have to and end up talking in code around our house, and changing said code when he catches on because he will make himself sick ...  with worry ... and anxiety.

So imagine this little five year old boy, who's so sick ... gathering up everything he's got to FAKE being fine. Out of sheer nervousness ... he begs me to read to him, so I do.

The P.A. comes in and takes one look at him ... asks us some questions ... his fever was down thanks to the magic of over the counter meds, and it was like he didn't believe us.  I remember Dennis specifically asking the DR if he could have appendicitis ...  and the P.A. told him ther was no way, that kids that young don't get appendicitis.

In retrospect - I should have - right then and there - demanded to see an actual doctor... but like a moron, I actually believed he knew what he was talking about.

The following day he seemed to be better ...

But by that Tuesday morning, he was back to the 104 temp, throwing up, completely and utterly lethargic.  I had to go two hours away for an appointment with the perinatologist.  I was torn, and crushed.  I didn't know what to do.  Who did I choose?  The baby inside me - who for his own safety needed to come out that week, or my sick child who I knew - KNEW - was in a lot of trouble.

So I did what every good mother would to.  I picked BOTH.  I told Dennis and my Mom, if he needed to be hospitalized, I wanted him in the same hospital I was going to end up giving birth at.

Dennis and I packed up Noah, I made him suck down some ibuprofen and prayed he'd keep it down.  We packed me up - to make sure I'd have everything I needed just incase baby day would be that day.   After it kicked in, he fell asleep and slept all the way there.

We got to the clinic and put Noah in one of the strollers they provide.  We rushed to our ultrasound, and then to our appointment.  It was determined that Nathan would be born on Thursday.  Once we knew what was going with The Little, we rushed down to Urgent Care only to be sent up to the Ped's department where   the Pediatric Urgent Care was.  We were told there was a wait.  A long wait.  I said we'd wait.  They got us back in a room in about a half hour, so I took Noah by myself back there.  Dennis, my Mom, and Calahan waited in the waiting area.  We were put in a room and waited.  The ibuprofen was wearing off.  His fever was spiking again.  All I had was his cup.  He was in my lap, and he was burning up and becoming completely lethargic again.

I could hear people out in the hallway.  Talking about people coming in and there was only one doctor there ...  how things were taking so long.... and I knew we were back there about an hour before the doctor came in.  I figured that I'd just let Noah sleep and I just watched him breathe.  I knew - if anything happened, this was the place to be when it happened.

The doctor came in and was very apologetic.  I gave her the run down of the fever, the throwing up, how we went into the ER, the DR said that he couldn't have appendicitis....

I thought that was a crock of shit, but I wasn't a doctor, I didn't know.  But the doctor looked at me when I told her, and said "Are you serious?" ...  yep ...  "that's not even close to being true."

I was close to tears talking to her, telling her I knew something was wrong with her.  I begged her to do something.

She put her hand on my shoulder and told me that she was going to do everything she could to figure out what was wrong, and she agreed with me.  Something was definitely wrong.  She wanted to run a ton of tests, blood work, x-ray, ultrasound, and she wanted him on an I.V. and she warned me, he might be admitted.  I told her I didn't care as long as he got better.  We'd do whatever we needed to.

I told her that he had been diagnosed with an ear infection the previous week and was on antibiotics - so I didn't understand how he could be so sick.

She promised they'd get to the bottom of it.

I remember how he screamed when they put the I.V. in ...  they had to try several times, I had to leave the room.  Thank God for Dennis...

Those kind of memories are burned into your soul.

We went back to meet with the DR and she asked me if he had diarrhea or not, I told her no.  She then explained that based on his blood work, they needed to admit him.  He had something called C-diff.

Clostridium difficile (klos-TRID-e-uhm dif-uh-SEEL), often called C. difficile or C. diff, is a bacterium that can cause symptoms ranging from diarrhea to life-threatening inflammation of the colon. Illness from C. difficile most commonly affects older adults in hospitals or in long term care facilities and typically occurs after use of antibiotic medications.

She told me that if I hadn't gotten him in again - he would have likely been so compromised in 24 hours he would have likely died.

The way she explained it to me was ...  the antibiotics he was taking for his ear infection killed all the bad bacteria from the ear infection, and all the good bacteria that lives in us ... the good bacteria makes the bad bacterias like C-diff .. behave.  Well with that bacteria gone, the bad bacteria's ... like C-diff ... have the chance to misbehave, even though NORMALLY they don't.  In Noah's case, the C-diff decided to have a party in his belly and caused his kidneys to fast track into failure.  That's why his right side was hurting, his right kidney was deeply injured.

One of his kidney's was smaller at birth, and I think it was his right one.  So it was already destined to have issues, I believe.

The fact that she told me he could have died, not only broke my heart but made me SO FREAKING ANGRY.  Why hadn't that P.A. taken us more seriously???

So, Noah was admitted.  And as soon as we got up to the room he started to have the diarrhea.  He was put in diapers to help with that, so he could rest without worry...  they put him on some extremely strong antibiotics that could combat the C-diff, and we all took a sigh of relief when it worked and he was getting better.

For 24 hours Noah fought for his life, and after that it was clear he was getting better.








   By Thursday, even though I knew Noah was going to be okay - it was still the hardest thing for me to do - to leave his hospital room, go down a floor to the maternity ward and have Nathan.  By the time the c-section was done, Nathan was whisked away to the NICU, Noah was deemed okay to go home on this two hour regiment of antibiotics.

I'll never forget being 9 months pregnant sleeping on a bench under the window praying for my child to live.  That's for sure.

And I don't like having such bad memories around the birth of Nathan, but it is what it is, and every year this time I remember what almost happened, and how very truly blessed I am.

Because of this, Noah now has kidney disease.  He has blood in his urine.  It all depends on how much and if there is protein...  but he'll always have to follow up with the kidney doctors and make sure everything stays stable.   

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