To whom it concerns :

My Husband and I recently had our second child, Andrew, who was born with End Stage Renal Disease. In order to sustain life he must have daily therapy … Peritoneal Dialysis to be exact. 

 We recently received a bill for $2669.00 specifically for the MANDATORY STATE REQUIRED 2 weeks of Peritoneal Dialysis training we had NO CHOICE but to have so that we could learn how to take care of our son and perform dialysis at home.  After speaking to a tricare representative it’s been brought to my attention that it’s our responsibility to pay because the “MANDATORY STATE REQUIRED DIALYSIS TRAINING” is on the GOVERMENT NO PAY LIST.  WTF ?

Let’s be clear. You approved for and paid for him to have his Peritoneal Dialysis tube surgically placed. You covered dialysis while he was an “in-house” patient at Children’s Hospital Los Angeles. You’ve approved and are paying for us to do dialysis at home, as well as covering all of the necessary supplies and medications to be delivered directly to our home. BUT, you won’t cover the “MANDATORY STATE REQUIRED DIALYSIS TRAINING” ?!?!?

This Makes NO sense. Believe me, you’ll be receiving a personal letter appealing said bill, as will our state congressmen and women. I’m going to make it my personal mission to have this changed, if not for my family then for the next family whose unfortunate enough to experience any of this.

 Oh, and if you haven’t noticed my self tittled blog “Type A Momma” …  I’ll find the time to be a pain your ass.

Since my last post you should all be happy to hear that I’ve found time to shower !  It’s eating I never have time to do , I do manage to make my coffee in the morning however ! Ahhh, priorities !

I’m not sure how current I am on Andrew , but I think the only thing that’s changed recently is that I have to cath him every 4 hours.  It was horrible at first … I was scared and nervous and it was just another thing for me to be responsible for( because for whatever his reason, this is something the husband won’t do ), but now Im quite good at it !  I swear I feel like I’m in the fast lane of self realization !  Every time we learn yet another thing we’ll have to do I totally freak out and have these major tantrums and completely reject it with every fiber of my being and then a few hours later … sometimes days, when I’ve had time to let it all sink in, I tend to treat this all like one big challenge !  So now when I cath him, it’s all about how much urine I can get out !  Yep …. that’s my life these days, once upon a time I’d been excited over new make-up, shoes, fun fashion forward jewelry …  today, I’m over joyed if I can squeeze out more than 10cc’s of baby urine !  In case your wondering why I have to cath him , he has something called hydronephrosis.  I think basically Andrews bladder is small, there fore not able to hold a “normal” amount of urine plus he has some scar tissue around his bladder caused by the blockage he had when I was pregnant with him so he can’t completely empty it so as a result it travels backwards up into his ureters which then dilates his kidneys and that can cause him to loose what little function he has left.   I know that was a crap load to try and understand … so just know that he had another sonogram 2 weeks ago and since cathing him things have improved !  Our urologist is hoping that if we continue, that over time his bladder with heal itself … fingers crossed !

So now my daily tasks include giving him medication every 12 hours, shots twice a week, cathing him every 4 hours, finding time to take his blood pressure, weigh him, get his dialysis machine set up ( takes about 20 minutes ) then getting him hooked up and started … dialysis takes 7 hours start to finish by the way.  While doing all of these things he has all of his other normal 4 month old needs to be taken care of , not to mention my Emma and all of the many things she needs !  Speaking of Emma, she started pre school on the 5 of this month !! She goes 2 half days a week, which she seems to be enjoying ! Those are fun mornings, let me tell ya ! I have to have us all up and fed and ready and out the door by 8:20am !  It surprises me every time we’re out the door on time !

In a good month we only have to drive to LA’s Children Hosp. once.  But of course it’s never that easy to schedule our apts all on the same day, so on the 29th of Jan it will be our 3rd time going.  Those are the LONGEST days EVER.  

Well, that’s about all I have time for … I’m going to try and find more time to blog, I totally miss it, life is just completely overwhelming for the moment, so I’ll do the best I can …

Now I must get back to coloring “pinkie pie” … she’s a My Little Pony , DUH !!!

As you can see Emma LOVES her baby “Annndrew ” !

Our shows about to air !!!   DECEMBER 9TH @ 9PM ON THE DISCOVERY HEALTH CHANNEL, TITLED BABIES 911 ! You can watch us along with 2 other families whose babies also have serious complications. Keep the Kleenex near by, and maybe don’t watch if your pregnant … or at least know that the odds are in your favor that none of these things will happen to your baby !

I thought I’d post a few pictures :

Our Miracle Workers Dr Chmait and Terri Maitino !!!  I have no words … we are so incredibly lucky to have ever been put in contact with these two, we love them dearly !   Hey Terri ~ I want my Wednesdays at 10 !!

Here’s Josh getting a quick lesson on how to use the small hand held camera …  Good thing because my labor happened so fast the crew missed the delivery, so Josh filmed it for them !!!

Melissa, the Director for Babies 911, filming Andrew moments after birth !

Josh being filmed while checking out Andrew in the NICU !

Enjoy the show !!!  And if your interested  Melissa has a few other shows airing this month, one called Marathon Love which will also be on the Discovery Health Channel @ 8pm on Dec 14th and another called The Wedding Planner which will air on the WE channel at 7pm on December 7th !!

Random people have been harassing me to update my blog , so since I have like 3 more minutes before Emma starts using me as her own personal jungle gym and Andrew wakes up wanting to eat I thought I’d give a quick update …

His latest labs were so good we were given one day off a week of dialysis, YAY !!  May not seem like much , but that’s like one day a week that my mom can watch BOTH kids so Josh and I can have some alone time, or better yet so I can take a nap or get my nails done or run lame errands and not have to be in a big rush to get home by a certain time.  On the other hand we have to learn how to catheterize him …. BOOOOOOO.   I’m absolutely not looking forward to it at all.  His urologist hasn’t been very clear about why or how long, so I’m not really sure what to make of it.  I do know that the kid pees a lot, so I’m not sure what good this is going to do.

We had a good apt with his pediatrician today …  she had to draw blood.  I couldn’t be in the room, so I sat in the lobby while Josh stayed with him.  I am that big of a baby , plus she talked about having to draw blood from a vein in his HEAD. NOT COOL.  Thank God she took her time and found a tiny vein in his wrist that turned out to be very juicy ! Poor Andrew … like being pinned down by 3 nurses wasn’t enough, he was then stuck with 3 needles in his thighs as to start his vaccination process.

I have a TON to be grateful for tomorrow …  mainly Andrews life.  He truly is a Miracle.

Happy Thanksgiving !

We’re HOME !!!!  We finished our 2 weeks of dialysis training Monday Nov. 3rd , so we are now unofficially   officially dialysis nurses ! I’ll add that hat to the many others we moms seem to wear ! You know, cook, maid, babysitter, cab driver, grocery-go-getter, dialysis nurse …

We really did recieve diplomas that state ” Childrens Hospital Los Angeles certifies that I Hannah, and Josh got his own, have successfully completed a course of study in CAPD/CCPD ( a fancy way of saying home dialysis)  on Andrew  !    So we loaded in the car, among the rest of our crap, a home dialysis machine and the MANY necessary medical supplies needed to get us started until Baxter ( our medical supplier ) can deliver our monthly supply. 

As anxious as I was to come home, I was also a little nervous to be leaving our security net behind.  The Dialysis nurses at the hospital were there to catch every little mistake we made  ( and believe me , the process is NOT easy, and there’s plenty of opportunity to make mistakes while connecting and disconnecting Andrew to his machine, only it’s not like “Opps, I missed a step, it’s “Oh, crap I forgot to shut the window before connecting him and now his “peritoneal cavity” is infected which is SUPER painful and could earn us a hospital stay.  Oh, so much for my exhausted brain to remember …

Anyways, I wanted to give a little update …   everyone’s been bug’n me to update my blog !  I’ll get back to it on a more regular basis once we get settled.  Right now, I’m just trying to figure out how to parent 2 kids and find time to shower !

Ok, so not only am I having a hard time making all these new adjustments receiving this “different” kind of care, but I have NO IDEA who to listen too.  Our nephrologist keeps telling us we can go “HOME”, which to us means our home … apparently to him it means the Ronald McDonald house.  Ummm …. NOT THE SAME THING, at all.  So we ask our nurse, but she hasn’t heard anything, so she asks the dialysis nurse but she can only ramble on about how we have to have 2 weeks of training but that can’t start until “the patient” has been discharged and that ALL of our many medical needs will have to be ordered and sent to our home before we can actually GO HOME. Then I found out that we have a new social worker on our new floor, so I tracked her down but she hadn’t heard anything about Andrew being discharged, so she’s going to talk to the dialysis CHARGE NURSE  and our nephrologist to see what’s going on but ” the closer we get to the weekend the less likely it is we’ll be released” … AH, HELLO IT’S F*ING MONDAY ?!?

So right now Josh and I are left to fend for ourselves …  What I think is going to happen is that WHEN Andrew is released from the hospital we’ll get to bring him back to the Ronald McDonald house with us for the 2 weeks of training we’ll receive. At this point we’ll take whatever option gets us out of the hospital . These 12 hour shifts are taking their toll on us.  We’re so BEYOND tired we can barley function. Not to mention Josh and I see each other for all of about 15 minutes a day, which consists of us filling each other in on what happened on our shift and what doctors have said and then one of us settles in and the other drags himself back to the Ronald McDonald house to sleep.

Speaking of which, sleep is what I should be doing but we have to move out tomorrow for 2 days.  I don’t know what genius came up with this rule but after 28 days of staying here at the Ronald McDonald house you MUST move out for 2 days. So tonight I’m doing our laundry, washing the bed linens , packing, and cleaning the bathroom, just so we can move into the Ramada for 2 days before HOPEFULLY returning back here.  And just for anybody interested , it’s all based on availability so there is a chance they won’t have a room for us.

Andrew is doing well. This afternoon they increased is dialysis to 100cc’s which is what we need it to be in order to use the home dialysis machine.  BUT, it’s leaking from his PD CATH and I don’t think that’s a good thing. My guess is that his body is so small it can’t retain that much fluid for that amount of time so it’s leaking out from where ever it can.  And a few times today his dialysis output was greater than the input which means he wasn’t peeing as much …  ( I’m not completely sure what that means on the larger scale of things, but the nurse wasn’t happy about it ).

Anyhow, that’s about it for tonight.  I must finish my chores so I can finally sleep …

Ok,  so here’s a quick update while I have a chance !  We no longer reside in the NICU   I know we should be happy about this, but it SUCKS.  Friday the nephrologist came in and said that Andrew was no longer sick enough to be in the NICU and that he would be graduated to the 6th floor that afternoon. We had just started to figure out the system in the NICU. We recruited Melanie to PRIMARY Andrew, and had another nurse ( Lindsay ) on my radar for days, we had asked someone for nights and it was all starting to feel good and we were happy about the consistency having the same nurse was going to bring.

Well, poo poo on that cause now Josh and I are having to take 12 hour shifts, because on the 6th floor the nurses have 4 patients per 1 nurse and the security is not the same nor are we in the sterile environment we were before. So, our little 4 week old Andrew is paired with a 6 yr old little girl … in like a real hospital room.  There’s nothing stopping anyone from walking in and taking my son , or preventing other families from staring at him,  touching him …  because the nurses on the 6th floor only check on him ONCE AN HOUR.  How freak’n ridiculous is that ?!?!

HOWEVER … they’ve teased us about being able to go home sometime this week !!!!!!!!!!!!!!!!!!   Andrew will come home NOT on dialysis, and sometime a few days later we will have to come back down here to Childrens Hosp. for training.  We need to learn how to use the home dialysis machine and give shots and all that other stuff.

I need to get back to the hosp. so I can relieve Josh of his duties , so I’ll write more when I get a chance

The Picture below is of Andrew’s PD CATH , or Dialysis tube. The “cars” band-aid is where they went in, it’s sitting behind his bladder, and you can see where it exits his body, it’s about 8 inches long.  Today we started Dialysis …  I’ll post a few pictures so you can see his set up.  Basically they attach another long tube to the end of his PD CATH and at the end of it is a plastic piece that attaches another 2 tubes … one that allows fluids to flow into Andrew ( 50cc’s )  and one to drain those same 50cc’s of fluid.   He started at 9am this morning, the fluid sits in his belly for 2 hrs and 40 minutes, then it’s drained and a fresh 50 cc’s are pushed threw and so on and so on it goes. The same process OVER and OVER again. 

The Green thing is like a blanket for his dialysis fluids … I’m not sure why it’s suppose to be warm ? I’m holding Andrew so that the fluid can drain.

Not sure if you can see it or not, but that white bag on the bottom right hand corner is the bag that catches the fluid that is drained from Andrew’s body. It’s actually this weird reddish brown color … all the waste his kidney’s can’t flush on their own.

This is what my beautiful boy looked liked before surgery :

This is what he looked liked the next day …   Sometime in the middle of the night he lost the IV in his leg, so they shaved a portion of his head.  I didn’t even recognize him when I walked in … I frantically searched for his name tag, and just sobbed when I realized it was my Andrew.   First surgery, now an IV in his head …

So today, after having time to get used to the idea of him being half bald, we’ve decided to make the best of it and asked our awesome day nurse Lindsay to give our little prince a MO’HAWK !!  That’s right, he’s rock’n it 80’s style. ” I pity da fool” !!