ER

We're currently in the ER. Stephen's cough is now a partially collapsed lung. Doctors still don't know what has caused this but there are a couple of possibilities which include RSV or bacterial pneumonia. In any case, it's not good. He's being admitted back to the IMC until they can get this sorted out. To say we're stressed and frustrated is the understatement of the year.

Sickie

Well, that cough I mentioned yesterday hasn't gone away.  It's actually gotten worse and Stephen now has his first "normal" kid illness.  According to his pediatrician, she thinks he's got some type of viral sinus infection that is causing the cough and the throwing up.  And I can't forget to mention; the bloody nose.  I freaked out yesterday afternoon when he woke up from his nap, threw up, and the sneezed out blood.  I had no idea that babies could get bloody noses; but apparently it happens when their nasal passages get dry.  I thought for sure it was going to lead us right back to the ER!  But the doctor says it should be about 10-14 days until this is all cleared up.

I just feel so sorry for him because he's coughing all the time, causing his stomach muscles to contract, which I know must hurt.  And there's nothing I can do for him except let him sleep as much as he wants.  Poor kiddo!  Hopefully he'll be feeling back to normal by the time Santa Claus comes!!

Home

It's 2:45 PM EST and we got home about 20 minutes ago. Stephen's taking a nap in his own bed, I'm unpacking everything (you accumulate so much stuff in the dang hospital) and Bill headed back to work. We would have been home well over an hour ago, but when the nurse de-accessed his Mediport, she stuck herself with the needle. So it was a huge long process of them trying to figure out what to do and then drawing more blood from Stephen.

The only problem is, my little guy picked up a nasty cough while in the hospital and I fear it's not going to go away without putting up a fight :(

I'm having trouble posting on the blog today as the Internet at the hospital is running really really slow, but I really wanted to post an update on what's happening with Stephen. I think the last time I posted, we were sitting in the recovery area (PACU) with Stephen. He has some trouble when he started waking up out of the anesthesia and was in some pain, but they have been doing
a good job at managing his pain on the floor. Yesterday was a good day; he napped a lot, but was able to sit up and start playing with some of his toys and some of the ones the hospital (Child Life Services) gave him to borrow during his stay. And he's been sleeping pretty well too. Bill and I have both stayed with him every night since we're in the Intermediate Care Unit (IMC) and not in the intensive care unit which has been nice. It's cramped and the sleeping arrangements are crappy, but we like to be here first thing in the morning when the docs and everyone come around. And they started letting him eat again yesterday.

Today though, he seems to be a bit off. I can tell he isn't feeling as good as yesterday. He's very lethargic and just uninterested in what's going on. So I'm trying to just get him to sleep and hopefully that will help. We did start dialysis today and everything seems to be going great, so his nephrologist is hoping to get us home tomorrow. He'll still be on very low volumes, over a long period of time (12-18 hours), so it won't be an easy transition to home, but it's better to be home than be in the germy hospital.

And on another really happy note, Stephen met Santa Claus for the first time this morning! It's a little bittersweet as his Momma because I never wanted and/or expected that his first time seeing Santa Claus would be in a hospital bed and you never expect that your own child will be on the receiving end of Christmas toy donations (I seriously can't stop the tears from welling up in my eyes thinking about it). But it was still really special!! And thankfully Bill hadn't left for work yet, so he was here too. The Fairfax County Police and Sheriff's Department hosted this special event for all the children at the hospital today. Santa Claus, Mrs. Claus, Rudolph, and a few elves came around with toys (hand-picked for each child's age) and took pictures and video of Santa handing out toys. Stephen wasn't scared of Santa at all, which was so awesome, but he did get a little freaked out by the bright camera lights. So...thank you so much to all the police men and women who worked to make this day so special for all these kids (and parent's too) and to all of those who donated toys!!! Stephen absolutely LOVES his new dinosaur toy and books!

Here's a family pic with Santa and one of Stephen playing with his new toy a bit before heading back off to Dream Land.

Recovery

Stephen's out of surgery and in recovery as we speak. He just opened his eyes for the first time and is trying to wake up a little bit. As soon as he's alert and able to take a few sips of water, they'll move us back up to his room.


- Posted using BlogPress from my iPhone

Surgery Tomorrow

We'll be checking into the  hospital this afternoon for Stephen's surgery tomorrow morning.  He's scheduled first thing tomorrow morning for 8 AM surgery with Dr. Kim; the same surgeon who's performed all of Stephen's surgeries.  He'll be replacing his dialysis catheter with a newer, bigger one and hopefully fixing the hernia that has come back.  I don't know if the hernia is the same one he had before, but it's pretty much in the same spot; right across his nephrectomy incision/scar in the middle of his belly.  We haven't talked or met with Dr. Kim yet so I don't know what the plan is, but we're confident that Dr. Kim will do whatever is best for Stephen. 

When I called the hospital this morning they still didn't have a bed for Stephen, but I'm guessing we'll need to have him there sometime in the late afternoon.  The only bad part is they'll have to make room for him either in the PICU or IMC.  They don't allow him to go to the regular pediatric floor because of the dialysis, which is a huge pain in the butt.  And the intake process takes forever...so who knows what the rest of the day will bring.  I just hope they make room for him in the IMC so we can stay the night with him.  It'll be a sleepless night regardless of where I am, but I'd much rather be next to him than have him be by himself!

I have absolutely no idea how long this surgery will last, but I'll update the blog once we get back to see him in recovery.

Beautiful Photos

I wanted to share a slideslow of photographs that we recently took on a Saturday morning in Old Town, Alexandria.  I have admired Rashmi Pappu's photographs for over a year, but we never had any intention of actually having any professional photos done; before or after Stephen was born.  But as you know, once things took a dramatic turn, I figured it was really important for us to photograph our journey so we could really remember things as time went on.  Well, back in early February, right after my birthday, I saw that Rashmi was hosting a contest on Facebook for a family to win a photo session with her.  We had just taken a family photo in the NICU on my birthday, so I submitted the photo and hoped for the best.  Well, once our friends and family and all the nurses and staff in the NICU heard about it, they rallied together and voted for us and our family, along with another mother fighting cancer and children, won photo sessions with Rashmi.  Click here to see the contest entry.

I waited so long to do the photos because I wanted Stephen to not only be healthy, but also able to sit up by himself so we could get some great photos of our little man.  It was a really chilly morning, but we had a blast and Rashmi definitely didn't disappoint!  The photos of Stephen are so beautiful and funny and perfectly capture his personality.  And I think we've definitely got a winner in the bunch for our Christmas card (or New Year's since I still haven't ordered them).

Sit back, turn up the volume, and enjoy!

STEPHEN'S SLIDESHOW




p.s. You have to watch the slideshow on a computer; not a tablet, iPad, or phone.