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” !!

I just want everyone to know that Andrew’s surgery went well.  He had the blockage in his urethra removed and the PD CATH placed.  It’s hard to describe, but basically he has like a 6 inch catheter tube hanging from the right side of his belly. I’ll try and take some pictures of it.   Right now we just need him to rest and heal.  His penis is really swollen, but should be better by Monday, which is also the day Josh and I are going to learn how to insert his catheters, oh joy !   I’m not sure how long it will take him to heal from his abdominal surgery … having the PD CATH inserted is suppose to be really painful , so Andrew will be receiving morphine every 4 hours for the next few days along with a few other medications for pain and one to help him sleep.

As much as it sucks to watch our little guy in pain, we feel really relived to have this part be over.  Having these surgerys just looming over us was REALLY stressful.  Now it feels like we can move on to the next step, whatever it is, and hopefully get a little closer to going home …

Well, it’s finally going to happen … Andrew is going to have the blockage in his urethra repaired, which we’re totally ready for. His catheter has been loose since the original fell out and it’s making it difficult for the nurses to accurately keep track of his urine output, plus the end of it is like duct taped to the inside of his thigh and it’s getting all red and irritated, so the sooner we can get rid of that the better.

They’ve decided he needs the PD CATH, so that’s going to be done tomorrow as well …  I have A LOT of anxiety about this.  There are so many risks involved, but according to the doctor there better than the alternative.  I suppose by that he means death.  In a way, I’m glad to just get this show on the road … the sooner we do all this, the sooner my baby can heal and we can begin dialysis which means josh and I can lean how to use the dialysis machine, place the feeding tube, give him shots  …  all the many things we must become competent in so that we may one day ( hopefully before the holidays ) bring our son home.   On the other hand, I’m scared and nervous and totally disappointed that it’s come down to this, although not surprised.  This is something Dr. Chmait had begun preparing us for a while ago.  I was just SO TOTALLY HOPEING that Andrew was going to shock the hell out his doctors and miraculously recover.

I need to go to bed because it’s after 11pm and I’m totally brain dead.  Not to mention I’ll have to wake up in about an hour to pump and then at 5am so that I can get ready for Andrew’s surgery …

Besides all of this, I have to have a talk with GOD.  There are a few things I need him to know before I can rest.

So we’ve had a bumpy few days …  For starters Andrew was scheduled for his 2nd surgery on Thursday the 25th to have his blockage repaired and have his PD CATH ( the tube used for dialysis ) inserted.  Wednesday night while Josh was giving Andrew his 5pm feeding the pediatric urologist came in and canceled it ! Andrew had, had an ultra sound the day before on his kidneys and the right one had improved a bit since the last time ( which was about 8 days ago ) so he decided he wants to wait a little longer.  He has more faith in the organs ability to rebound than does our nephrologist who is still pushing to have the PD CATH inserted so that we may begin dialysis.  Having the 2 of them be at odds with each other has added a whole nother level of stress which I haven’t the energy to even get into at the moment, however as parents we’re much more comfortable with our pediatric urologists conservative approach to Andrew’s care versus the nephrologists aggressiveness …

Wednesday night I went to congratulate my precious boy on escaping surgery for the 2nd time … We high fived, I gave him a bath, washed his hair, changed his diaper …   He was so happy he even ate his ENTIRE BOTTLE for me, a first of which I was SO EXCITED about !!!!!  I sang him to sleep and left feeling positive and encouraged.

Imagine my disappointment Thursday morning when we learned that sometime early that morning it was discovered that Andrew was given a faulty PIC LINE.  Apparently there was a manufactures defect ( and of course my son was lucky enough to have had received it ) and it started leaking so they had to pull it out.   He had to be sedated so they could TRY and replace it … they couldn’t.  They tried again today  … again unsuccessfully. So for 2 days in a row our little Andrew has been sedated and poked. Because his kidneys have a hard time getting rid of waste it takes him much longer than other babies to recover from the medication which means I’ve barley seen him the past few days …    Apparently their going to give him until Monday to recover before they try again   BTW, his catheter also came out last night …  so they had to replace that twice as well. His night nurse tried, but when I went to check on him this morning before his second PIC LINE attempt I changed his diaper and noticed urine leaking out from around the catheter  … she used the wrong size, so they were going to replace that while he was sedated this afternoon.  I need to remember to ask about that tomorrow …

All of this sucks … It felt like we were making such progress and now it seems we’ve taken 3 steps back.   My stomach has been sick with worry, I haven’t slept well the past few nights …  I’m SO READY for all of this to be a distant memory …

I don’t think any of you will ever understand how uplifting, encouraging and supportive all of your warm thoughts, prayers, well wishes and love mean to us.  When I see all the comments left by all the moms around the globe, most of which I’ve never had the pleasure of meeting, who have had similar experiences with their babies being in the NICU and have happy endings to share, I grab on to those and hold them tight, because it gives me that much more hope that we too will have our own happy ending to share one day.

So yesterday was a good day for our Andrew …  this truly is a roller coaster ride. I think we’re realizing that we can’t take the “highs” to high or the “lows” to low because things change daily.  There are 2 things that we’re learning to ask the doctors about when we see them , the 1st is “how’s his urine output” ( it should be 2 or above) , his has been ! The 2nd is ” what was his CREATIN level today” ?.  They want it to be below 1, his was 2.9 the day before ( anything over 2 is a pretty good indicator that dialysis is required ), yesterday it was 2.3 !!!!  It actually decreased a little !!!!!  GO ANDREW GO !!!   Although this doesn’t rule out dialysis in any way shape or form, it does encourage us that his little body may have the ability to rebound, even a little !

I’m convinced there’s more than one of you out there with a direct line to the big guy and for that we are GRATEFUL ! You have no idea how much .  Together we’re creating this HUGE circle of love and strength that’s surrounding our little Andrew … he has NO CHOICE but to feel that incredibly healing energy.  THANK YOU THANK YOU THANK YOU !

Last night Josh and I were able to give him his bath ( with some help from his night nurse Robin ) and feed him ! Here are a few pictures :

I’m not really sure where to start, as we learn more and more information daily.  This whole experience is something I’d never wish on any parent.  Giving birth and welcoming new life into this world is one of life’s greatest blessings , not to be able to bring your precious child home to love, hold and explore is one of life’s greatest heartaches …

When I hold my baby I must always be aware of all the many tubes and IV’s attached to his fragile body … do they have enough slack, is he comfortable are any being pinched etc …    It’s all very surreal because when he’s wrapped up nice n’ tight in his blanket and you can’t see the tubes he looks like a healthy baby boy and for just a few seconds I forget about the long, rough road that lies ahead.

Yesterday was a crying day …  we had A LOT of information thrown at us, none of it good.  My day started by learning that his 3rd IV blew …  They’ve been rotating Andrew’s IV’s between his hands and feet. He’s having to receive SO much more fluid than healthy babies and apparently his little veins can’t handle it, so they take what they can until they blow.  I walked over to his station in the NICU and saw his swollen, puffy , bruised foot and just began crying and couldn’t stop. This happened so many times yesterday that last night I was asked to give consent for something called a “pic line “.  It’s basically a more permanent IV that’s run threw Andrew’s arm across his shoulder and in near his heart.  Almost all the babies in the NICU have them, not that it makes me feel any better.

We talked with and met a few of his doctors yesterday … the Nephrologist explained in great detail for about an hour how Andrew needs dialysis and eventually a kidney transplant and all that it would entail, all of which I cried threw.  He told us that his life will most likely be like a roller coaster … that we’ll have many ups and downs with his health should he live long enough to reach his goal weight of 20lbs so he can receive a transplant.  I HATE roller coasters … Then he told us that he was going to try and get one of his partners to place a tube that would run in between Andrews body and skin across his abdomen and into his belly button. ( I forget what it’s called at the moment but it would be used for dialysis ).  Since Andrew was scheduled for surgery today they decided to do both procedures at the same time.

To make an incredibly long story short, when we arrived this morning for Andrews surgery, the Pediatric Urologist told us that he’d decided to wait on the surgery. That he decided he wanted more information  and since Andrew is only 3 days old, he wants to see what his little body might do.  Of course we’re happy that we didn’t have surgery today …  It’s in our near future but everyday Andrew’s given to get stronger is best in my opinion.

Andrew’s been given so many medications for his PIC LINE and in preparation for surgery that he was VERY sleepy and lethargic today, so he didn’t eat well and had to have a feeding tube placed down his tiny throat.  I barley saw him today simply out of exhaustion. I haven’t slept, my body is still healing, my milk came in today, I got up at 5am for his surgery … I had to take a day and rest.  But tomorrow I plan on sitting with my baby and giving him some serious mommy time.  I think it will make both of us feel better …