Wednesday, September 16, 2009

Nathan=Autism Clinic & Noah=Kidney DR (UPDATE)

Anyway .....  run down..
Nathan's was tested this morning by Speech, the DR and the OT/PT person...   he has significant speech delays and physical delays but his fine motor is his strong point.  He was not making eye contact and although he was having a really good day and not melting down with his sensory issues...  the saw enough to want to continue testing, this time not just looking for developmental delays - they are going to be testing him on the spectrum tests for Autism.  She thinks it's going to be a long process with Nathan to get any sort of answers on the Autism but there is enough for concern and I wasn't crazy thinking it.
Noah also had a re-check with his kidney DR.  If you all remember he had kidney failure 2 years ago - the week Nathan was born he was in the hospital... 

Some background:   In 2007 when I was pregnant with Nathan, during my last week of pregnancy... Noah got sick.  8 days before I gave birth to Nathan I had taken Noah into the DR for an ear infection, very common thing in Noah's life.  He was given antibiotics.  This was a Wednesday - April 11th.  Fast forward to Sunday, he's been running a 102 temp and throwing up once in awhile, he is complaining that his right side is hurting really bad (we're thinking appendicitis?)  ...  so we take him into the ER.  We are sent back to some back rooms outside the ER where a Physicians Assistant sees us.   No offense to any PA's out there, but I think I'll be insisting on a DR from now on when this sort of thing occurs.  Noah was of course trying his best to act "normal" because he HATES Dr's, he cries - gets anxiety attacks anytime you mention taking him ..   so he was insisting I read to him and kept asking him to go home, and when the PA saw him (without doing a test on his urine which he SUPPLIED a sample) or anything - he said "it's just a virus" and told us to go home... when we asked him if it could be appendicitis he said "he's to young to have that" ... and we were sent home.   Monday went by and I was debating taking him back in, but he'd get better and then get worse.  Tuesday morning I had to go to Marshfield for an appointment with my OB there because Nathan was going to be born either that day, (April 17) or sometime that week.  When I got up and Noah was back up to 104  (not exaggerating AT ALL either) and throwing up, and pretty lethargic, I cried and cried trying to decide what to do, make him suffer a 2 hour ride and my appointment to be seen there - or to have my mom take him back in when I was gone.  I couldn't leave him, he was SO SICK, so I scooped him, as pregnant as I was... and said "we're taking him with" ... we packed him in the car, made him as comfortable as we could and left.  We get there, get my appt done, Nathan is to be delivered on Thursday, and we take Noah to Peds and ask him to be seen there (this is where Urgent Care there sends the kids) ...  So we get taken back, end up waiting an hour when Noah's fever is returning and he's pretty lethargic again... all he wants to do is she (the DR) says there is something definitely wrong.  I mention the appendicitis and what the PA said and she says "he's NOT to young to have it, that guy was wrong" ... he is immediately admitted and we discover he has TONS of blood in his urine and that his kidney's are failing.  He spends Tuesday & Wednesday in the hospital and it's discovered by late Tuesday (I think it was) that he had C-Diff ...  which happened when his antibiotics killed off all the good and bad bacteria, but C-diff is a common bacteria in your body that typical antibiotics don't kill and sometimes the C-diff decides to have a party and run ramped in a body, causing problems.  Well this is what happened with Noah.  And it caused his kidney's to start shutting down.  If it had gone on much longer, it may have died, or had extreme permanent damage to his kidneys and maybe other organs.   He was given strong antibiotics and Thursday April 19th, after his baby brother Nathan was born, Noah was released from the hospital (going home with my mom) and before they did, he got to come see his new (and first) baby brother.
Anyway.. his kidneys returned to normal function and he's just been going in for re-checks.  The last few appointments were fine. 
I expected nothing but this time.  HOWEVER ...  he gives the urine sample at the lab when we were on our lunch break from Nathan's appointments, and then when we got into his appointment - nurse did all the stuff, then she comes back and says Dr. H wants another urine sample ...  I was all ????? huh?   I said "did they loose the last one?" ... she says "no, I think there was some bacteria in there or something - he wanted to make sure it wasn't a fluke" ... so we went to the bathroom and he left another sample.  Dr. H comes in and says....  "Noah has blood in his urine again" ... and I'm thinking it's the normal "couple" red blood cells that is normal for us, I got "benign microhematuria" from my Dad - his mom, one of her sisters - my brother has it and so do I.  It just means that there are always a couple of red blood cells in our urine, and after Noah's kidney issues, he always had some too so we thought it might be that since it's hereditary.  Anyway, he goes on to explain that his urine is green, and that's a sign that there are blood cells in his urine... now I don't mean GREEN ... I mean GREEN ...  so - it's apparent but not so apparent that I can't think I'm going nuts and it's really yellow., because there have been MANY TIMES in the past several months where I have walked into the bathroom after Noah pee's and doesn't flush and think "that looks green.. huh... must be the lighting" ... it started about 3 months or so ago when I had gone into the bathroom after one such incidents and the urine was THIS COLOR ABOUT ...  and so I told Noah next time he pee's I want to see the color, thinking I might have to take him in ... and it was lighter and the next time lighter... to the point where it turned the GREEN color.  So he tells me the green is a sign of blood and I start to kick myself.  F*** F*** F***!   Insert Mommy Guilt..
So ... as the appointment progresses he's asking about kidney issues in the family, hearing issues (which you all know he has) ... and he's asking if Noah ever complains of joint pain... I tell him that he's constantly complaining about his legs hurting...... (insert MAJOR Mommy guilt NOW please) and so I tell Noah to lift up his pant legs to show the DR if his knees are red or swollen ... and he (Dr. H) notices that Noah's muscles in his legs are 2 completely different sizes.  COMPLETLEY.  He asks if I know if any reason they are like this, I and say - no....  other then he prefers his right foot and he hops a lot and that's the foot he hops on... (his right leg muscle was bigger) ...  so then he says, do you think Noah's legs are two different sizes?   ...ah... I don't think so...... and then Noah stands up straight and his left knee is popped out.... and his right knee is popped in.... and OMG ... I see it.... his left leg is longer then the right.  OMG OMG ARE YOU SERIOUS???  SO now, the DR pulls out the tape measure and his right leg is 2 cm shorter then his left leg. To put this into prospective.... an inch = 2.54 cm.  So his left leg is almost an inch longer.  While we were walking out of the clinic I'm watching him walk and I'm thinking - OMG I can see him LIMPING!!!!  Why WHY WHYY didn't I see this before??????   Anyway ...  he has to have another hearing test, a ultrasound on his kidneys, a meeting with his orthopedic DR (who is also an orthopedic surgeon) and doing some blood work. 
The one appointment I WASN'T worried about................

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