2011 Christmas Card

You know you're past the "newlywed phase" when you ask for and receive practical gifts for Christmas/birthdays/celebrations.  This year it was a new wireless scanner/copier/fax/printer and a docking station/alarm clock for my iPad and iPhone (I'm way too connected to the Internet world, I know).  So now that I have a working scanner, I'll be able to share things more easily with all of you! The first of those things I'd love to share is our Christmas card.  If I had the means to do so, I would send each and every one of you a card since I consider everyone who reads my blog a friend.  But until cards and postage are free, or I win the lottery (!), that won't be happening.  So the next best thing is to share it virtually!!

The text on the back of the card says,

"2011 has been a monumental year in the Schwartz household!  The beginning of the year brought the birth of our first child, Stephen Charles.  He is a true miracle and has taught us that the most important things in life are family, friends, health, and love.  He is a special gift and continues to amaze us each and every day and we are so blessed to be his parents. We want to thank you from the bottom of our hearts for all the thoughts, prayers, and well wishes we've received over the past year and to all the doctors and nurses who have so lovingly cared for Stephen.  We want to wish you and your family a very Merry Christmas and a happy and healthy 2012!"

The photos were taken by Rashmi Pappu, photographer extraordinaire.

Merry Christmas

We had such a wonderful Christmas today! Stephen had a blast ripping apart the wrapping paper and bows and I think he understood that he got some new toys today. And best of all, he slept in! We had to wake him up around 9:15 this morning. Although, we were up with him last night for a few hours, so it wasn't like he slept the whole way through the night (but these seems par for the course with the medications he's on). Santa was very good to us this year, and it was everything we hoped it would be. It was certainly 180 degrees different than last Christmas!

It was really hard to choose, because we took so many pictures, but here are a few picture from Christmas Eve and today. We hope you all had a wonderful Christmas with family and/or friends or just spent the day in comfy clothes watching movies (as we did all afternoon and evening).

WE.ARE.HOME!!





Once I get my feet under me again (there's always so much to do when we get home from the hospital), I'll write more. But Stephen is currently rolled up in a little ball, in the upper corner of his crib, snoozing like a baby! All the prayers were answered. Stephen will be home for Christmas!!!!

Update

Thankfully, Stephen's respiratory condition is getting better, so we are really thinking that we'll be home for Christmas; but, things in the hospital are just as stressful, if not more, than they have ever been. And it comes down to a lot of factors all happening at the same time. The albuterol and steroids are still wreaking havoc on Stephen's temperament and demeanor, especially at night. We've decided to take turns staying at the hospital because there's no sleeping at night and what's the use in having two super cranky parent's when you can have just one? Also, the respiratory panel still hasn't come back from the lab, so Stephen's still on isolation. That means everyone that comes in and out has to put on a gown, gloves, and a mask. And I'm not allowed to go anywhere on the floor; including the pantry to get water or coffee. I have to ask a nurse to get it and that's not their job, nor their concern. Yesterday, Santa Claus came around again to see the kids, but because of the isolation, he wasn't allowed to come in Stephen's room :(

And today I spent forever trying to figure out why Medicare is denying all of Stephen's prescription medications and how I can drop his Part D Medicare since it seems completely useless. But no one has any answers; not Medicare, not Medicaid, not the County and certainly not anyone here at the hospital or the social workers. It's such a nightmare! The answer I keep getting from people is that they've never heard of someone getting both Medicaid and Medicare or that he has a very complicated case and I'll have to talk to someone else. Why can't someone just do their job and find the answer? All I need to know is that I'm making the best/right decisions for my child's healthcare.

Ugh. Can you tell I'm a cranky person that just wants to go home!? At least they keep weaning Stephen off of the high-flow canula and breathing treatments and unless there's some major set-back, we should be home soon because I can't get out of here fast enough.

Thank you

I am moved to tears by the outpouring of support for Stephen, Bill, and I. I can't thank you enough for all the prayers, thoughts, positive energy, and virtual hugs we've received over the past 48 hours. Even though most days we feel so alone in this journey, your messages are a reminder that there a lot of people out there that truly care about us.

Stephen is getting better; little by little. He (and we) had another sleepless night, which only multiples the stress level (this has been a BIG lesson in patience!), but this morning they backed off on his albuterol from 10 mg to 7.5 mg. Which is definitely a step in the right direction. It helps to know that the attending doctors (the doctors that oversee the residents) from the PICU come and check up on him every shift, which is very reassuring. They're super smart and knowledgeable!!! And his lungs sound better with minimal to no wheezing, another plus. But there's definitely still evidence of atelectasis (collapse of part of the lung) in portions of his lungs. We're still holding out hope that Stephen will be discharged by Friday, but know that Santa will find us no matter where we are!

It's been an incredibly challenging 24 hours for all three of us. For Stephen, his challenges have been more monumental than ours; in that he had to work incredibly hard last night just to be able to breathe. For us, it was challenging to watch him struggle and get sicker and sicker with each minute that ticked by. It was a very scary night for us.

As I mentioned before, this all started out as a little cough on Wednesday while we were still in the hospital. Thursday, it got a little worse, and he seemed as if he wasn't feeling very good. Again on Friday, he was worse, so I took him to the pediatrician. The doctor said it was a viral sinus infection and that there wasn't anything they could give him. Saturday he continued to get sicker and was so inconsolable and his breathing seemed to be getting faster and more shallow, so we decided to take him to the ER (it started off as a drive, hoping that it would put him to sleep). By the time we got here, he was clearly in distress; both respiratory-wise and just all together.

His RSV swab came back negative, but the chest X-ray clearly showed that a portion (the middle lobe) of his right lung had collapsed leading the doctors to believe he has pneumonia. Both his heart and respiratory rates were elevated and his oxygenation was in the low 90s so they started some nebulizer treatments. Almost instantly you could see an improvement in his temperament, but you could still see in his chest and abdomen that he was struggling. Apparently, the treatments give the feeling of an "oxygen high." He received two treatments before we finally got up to his room.

Once we got to his room though, things just kept getting worse. He screamed for about two hours while our patience wore paper thin, until he finally got another breathing treatment. The treatments were supposed to work for two hours, but after only about 20 minutes, Stephen was screaming again. The respiratory therapist gave him one more before deciding to up his dosage of medication and do a series of three treatments back-to-back. But it quickly became clear that that wasn't working either. Stephen's temperature got up to 102.4 and then some panic set-in. Well, the panic set-in on our part, and the doctors and nurses just started scrambling figuring out what to do next.

My huge concern was that with a pulse hovering around 220 and respiratory rate (breaths per minute) in the 60s, he was going to either go into some sort of arrest or need to be intubated (breathing tube) like what happened back in January in the NICU when he got pulmonary hypertension. What they ended up doing was giving him the maximum amount of albuterol allowable (the breathing treatment drug) in a continuous manner. And he's been on that ever since.

Eventually his temperature came down from the cold wash clothes we kept on his forehead and legs, but no one ended up getting any sleep. The albuterol unfortunately gives Stephen some tremors in his legs and actually raises his heart rate (sort of like caffeine), so he hasn't really slept at all. He did fall asleep tonight around 9:30pm, but between his cough and the nurses taking vital signs every hour, he isn't really able to get any solid sleep. Which of course means we don't get any real sleep. But what's another night of bad sleep!? Oh and since it takes 72 hours for the results of his labs to come back, we're also on isolation. So I can't even go to the damn pantry to get a glass of water!

But thankfully Stephen hasn't gotten any worse since last night. He's holding steady right now on the same treatments, which is ok for the time being. As long as we never have another night like last night, I'll be thankfully. There's nothing scarier that watching your child struggle to breath!!

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.

T.G.I.F

Thankfully we had a much better ending to the week than we did at the beginning! Stephen's feeling 1,000% times better today that he did last week and earlier this week and his cultures and labs are the same. The cultures haven't grown anything and his cell counts are near perfect so all the dialysis and antibiotics he's been getting have done the trick. We still have to replace the catheter, but at least he'll be going into this surgery with absolutely no bugs in his belly. We haven't gotten a definitive date for the surgery, but it's likely to happen on Monday, December 12th. We could possibly do it on Friday, December 9th, but we'd be an add-on for the day and his surgery could get bumped which would mean we'd probably be stuck in the hospital over the weekend. Yuck! So we're hoping for Monday. Now we just need to keep our fingers crossed that his patched-up catheter holds until then! There's no reason why it shouldn't, but we don't seem to have very good luck lately.

In other non-medical related things...I started decorating the house for Christmas which is always fun. We don't ever seem to get around to it until the week before Christmas (we have to drag everything out of our storage unit), but now with Stephen, I'm dying to get the tree up! I cannot wait until next year when knows more of what's going on! And in other news, we have a big birthday to celebrate this weekend! Someone...starts with a B, ends with illy...has a birthday on Sunday. Nothing big planned, but Stephen and I have a little something up our sleeves :)

And just to start the weekend off right, here's a little video I took this evening. Stephen's really into turning the pages of books right now and he loves this little book with lights and sounds. Plus, it's just his size. And I've been working on trying to get him to wave hi and bye. You'll see he's gotten pretty good at imitating too.

I hope everyone has a lovely weekend!!