Long Day

Today was such a long, crazy, stressfull day, but in the end a very good day!  We had a very long consult with the new GI doctor in DC this morning (very early this morning) which was emotionally and mentally draining, but so incredibly helpful and worth all of the work; a fantastic speech therapy appointment that left me with so much to think about and like this morning's appointment, left me with TONS of questions for our nephrologist and nutritionist; had to pull the trigger and buy Stephen a new car seat since he's outgrown his infant car seat and needed to get it before we attempt our first trip to the beach this week  (those darn car seats are crazy expensive!!!); and met up with one of Stephen's NICU nurses, Jess, for happy hour which was the perfect ending to a long day!  You might remember, Jess and I actually went to high school together and she was working in the NICU the night Stephen was born and she became one of Stephen's primary nurses.  I had no idea that Jess lived in Virginia, let alone lives right down the street from me and was a nurse at Fairfax hospital! Such a small world!!  So it was such an amazing and welcome surpirse to find out she was there the night Stephen was first admitted to the NICU. 

I have so much to share about our appointment today with Dr. Kerzner and Stephen's speech therapist, but to be completely honest, I'm too lazy to do it tonight.  So....I'm going to pack it up for the night and work on getting a post up tomorrow.  :)

Have a good night!!! 

Weekend Roundup

As I expected Hurricane Irene came and went and we weathered the storm with ease. We lost some big trees in our community, but thankfully we never lost power and we didn't have any flooding. Hopefully our NYC friends will fare the same!

Here are some pictures from this weekend. I'll make sure to update this week after our big appointment on Tuesday!

Storm

The media is having a field day with Hurricane Irene telling us we need to prepare for this giant storm that's going to shut everything down for days. Personally I think they are overreacting, per the usual, and I really hope I'm right! But preparing for a storm takes on a whole new meaning not only now that we have a baby, but a baby with special needs. I started thinking about it yesterday in terms of some of the giant blizzards we've had or if we lived some other place like New Orleans and had to weather a storm like Hurricane Katrina with Stephen. I can't imagine what we'd do! We'd obviously have to evacuate very early to make sure we got out in time with all of Stephen's equipment, but what would we do if we ran out of medical supplies? And where would we go for medical care? And how much work it would be to get new supplies shipped out! God I can't even imagine how scary and how stressful it was for people with medical needs in the Gulf!? It makes me realize I need to keep extra supplies on hand ALWAYS and to really stay on top of Stephen's medication refills...just in case. Before Stephen, Billy and I would just make sure we had some soup, bread, and booze on hand. We could figure it out as it came but now we've got so much more to think about! We'll always have to worry about medications, but hopefully the next time we get a massive blizzard or hurricane, Stephen will done with dialysis and losing power won't be such a big deal!

Earthquake!! & Other Things

How crazy is it that we had a 5.9 earthquake on Tuesday?!?!?  And in true Schwartz fashion...it happened while I was at work and on Stephen's first day with his new nurse, Maureen.  Meaning the first day of work Stephen ended up in the ER, the second day of work Stephen's nurse didn't show up and this week we had a earthquake!  Seriously, what are the chances?!  The earthquake, in hindsight, was actually pretty cool, but what wasn't so cool was that our cell phone and landline phone service didn't work for about an hour and a half.  Email service thankfully worked so Bill and I could reach each other, but neither of us could get through to Stephen's nurse to make sure everything at home was ok.  Kind of scary if we were really in the middle of some type of big emergency.  But at the end of the day, everything at home was fine, Stephen was all smiles when I got home and Maureen seemed to do a great job.  So it looks like we've found a great nurse to take care of Stephen while I'm at work.  Thank goodness!

In other "kidney news," yesterday we had our weekly nephrology appointment and are making some changes to Stephen's dialysis, diet/nutrition, and medications.  Stephen's weight has become a big topic of late and we're finally going to make some changes to slow his weight gain down.  He's a big chunky money! :)  So we're decreasing his caloric amount (calories per ounce of formula) and daily amount of formula while also switching up his dialysis fluid so he'll actually stop absorbing so much glucose.  He's on a 2.5% glucose dialysis fluid and absorbing way too much of it.  Basically, it's like Halloween everyday for little Stephen!  So we're going to do a mixture of 2.5% and 1.5% solution so he'lll hopefully absorb less sugar overnight.  And because his albumin has been low over the past couple of weeks, the doctors want him to get an albumin infusion.  It's a medication he'll get through an IV at the hospital.  One of the side-affects of low albumin is low blood pressure which we've been experiencing for the past week or so.  And it's possible that his low albumin is also an indication that Stephen's liver function isn't as good as it was a few months ago.  But his reflux seems to be doing a little better and I'm really looking forward to taking him to see a new GI doctor at Children's National next week!

Now we're hunkering down and getting ready to weather out the storm this weekend!

Thankful

While taking a walk with Stephen down to Shirlington this morning, I noticed a big group of Hispanic women and children waiting for the bus stop which was a bit weird (I used to take the bus and never saw that many people waiting at that stop before) but saw their grocery bags and figured they must have just taken a trip to this Harris Teeter.  Weird they would have taken the bus to the Harris Teeter in Shirlington, but whatever.  Then on our way back home, I noticed a whole other group of women and children, this time even bigger and then realized that they had been to the Arlington Food Bank which is just across the bridge and were waiting for the bus to go home.  Seeing all those women and children made me realize how thankful I am for every single thing we have.

With everything we have been through in the past 10 months, it's easy to sometimes lose sight of all of the positive things that have happened and just how luck Billy and I really are.  I think it's probably natural to dwell on things we missed out on and sacrifices we've had to make and the feeling that we just can't seem to catch a break, but when I thought about it on the walk home, I need to just stop being so negative and think about all the amazing things I do have.  I have a beautiful baby boy who is a true miracle, a great little home that is perfect for the four (can't forget Mabel) of us, the ability to provide the best healthcare possible for Stephen and everything he could possibly need, and we have amazing family who loves us unconditionally and would do anything to help us.  But most importantly, and the thing I probably lose sight of the most, is a husband who has been there with me every step of the way through this journey, has seen me at my worst, and would do anything for his son.  We've been through more in the past 3 years than some couples will have to deal with in a lifetime, and it certainly hasn't always been easy or pretty, but I am so thankful we're together in this journey.

It's strange that seeing those women and children triggered that emotion today, but I guess it's the random things that sometimes trigger those emotions.

Still Puking

I guess a lot has happened since I last posted, but at the same time, not much has happened. Sounds confusing, I know, so I'll explain. We left the hospital late Monday, had a few bad days, then a few good days, so we went back to York for Round #2, came home Sunday evening, and have had a few more bad days. Stephen just isn't feeling good. I can tell because he's not sleeping, he's whining/crying for long periods of time, and then will do the weird breathing thing until he calms down and falls asleep. Plus he's throwing up still at almost every single feed. I just think it's unacceptable for his doctors to think that it's ok that he's literally gagging and wreching and refluxing all the time. I finally had enough and called his GI doctors today and of course like I expected they can't see us until next week. And it was made known that i was very lucky they fit me in next week in the Manassas office. Ugh. So my task for this week is to find a new GI doctor. I'm so tired of them not seeing us when Stephen is sick and not figuring out what to do. Obviously the changes they made in the hospital aren't working so they need to do something else and do it ASAP! I'm putting on my "advocate armor" and taking charge! And they've GOT to figure out why he's not sleeping. He hasn't slept well consistently since the night he came home on March 3rd.

But the good news is that Stephen and I were able to finally get to my parents church in York, we had a successful trip, and we had Stephen's first speech therapy appointment on Monday which went really great! I've been trying hard to give Stephen some juice and water a couple of times everyday and attempt some solids foods here and there to hopefully get him back to taking his formula and food by mouth. Tonight after work, we tried carrots for the first time. I just couldn't resist snapping some pictures and a video of Stephen because he did such a great job with his carrots! I never thought those words would have ever come out of my mouth, but I guess that's what happens when you become a Mommy! :)

If the movie doesn't show up, I'll attempt to fix it tonight.

Back in the Hospital

As you may have guessed from my previous post, we are back in the hospital. Stephen and I were having a great week in York and all seemed to be going great so Bill drove up to PA after work on Friday with Mabel. We had great plans for the weekend which included introducing Stephen to more family and friends, going to a BBQ at my sisters house and then taking Stephen to church on Sunday to show him off some more. But we were thrown a curveball Saturday morning when we woke up. Stephen woke up screaming (which isn't far from the norm), but when we got him calmed down he seemed a bit sick. He was limp, very tired, and lethargic so I figured he had just tired himself out crying so hard and laid him back in bed and jumped in the shower. I checked in on him after I got out of the shower and noticed that his breathing appeared to be "off." He was taking a few breaths, albeit shallow breaths, and then holding his breath or not breathing for a few seconds and then taking a big breath before the pattern continued. This went on for about 10-15 minutes before we decided we needed to get him to a hospital.

The big question now was do we take him to the local hospital, Hershey Medical Center or drive the two hours back to Virginia. We decided to drive the whole way back thinking that he wasn't in any immediate danger since he was breathing and going someplace other than Fairfax might be a nightmare trying to explain his whole health history and what not. If it had been a real emergency, we would have called 911 or driven to Hershey. Plus we figured if we got in the car and something happened we would either find the nearest hospital or call 911 from the car.

Thankfully we made the right decision and got Stephen to the hospital within 2 hours. He slept for a bit in the car with my hand on his chest making sure he was breathing, woke up and was alert for about 20 minutes, and then spent the rest of the trip crying and whining. They admitted him to try to figure out what's going on (after sitting in the ER for hours) and of course we're still in the hospital. We've seen GI for a consult to figure out why he's throwing up after every single feed and had another EEG and neurology consult. The whole crew of residents just came in with the doctors and they still don't really know what's to blame. There was some thought it was a side effect from one of his medications, but now that's been taken off the table. The pediatrician thinks it might be caused by the fact nephrology has been overfeeding him. Meaning his formula is concentrated too much and he's getting too many calories; not that he's getting to much volume. But we haven't gotten any confirmation from anyone. Just that the specialists, GI and nephrology need to get together and figure it out. To me, it doesn't seem to explain why his breathing would be affected just on Saturday and Sunday and not today or before Saturday.

But I do know that he's feeling 100% better today. He woke up not screaming or crying and has been playing in his bed for the past hour and half. And today's the first time I've seen a smile since Thursday (he started feeling sick on Friday) and I even got some raspberries thrown my way. So hopefully this means he's on the mend and he's now getting the right combination of medications. I'm hoping that maybe they'll discharge us today and tweak his feedings and meds at home. Now it's just a waiting game to see what the doctors want to do.

Here are a few pics I snapped this morning when Mr. Grumpy was being Mr. Happy :)












Here was Mr. Grumpy yesterday during his EEG. The poor little guy was not feeling well as you can see:




Thankfully I think that sad face is now behind us!

Guess what?

Guess where we are? I'll give you a hint...it isn't where we are supposed to be.

Vacay

We arrived in York at Mimi's and Poppy's and are having so much fun playing and exploring all the new toys and things at Mimi's house! We'll be here through Sunday seeing lots of friends, neighbors, family, and people who have been praying for Stephen for a long time. And hopefully Mommy will get some time to relax too. :)

Here's Stephen in his new big boy highchair we got him on Monday. Much much better than the Bumbo!





And here's Stephen having a blast at Mimi's in her jumparoo

Nurse-A-No-Go

We've had a crazy week here in the Schwartz household. We've been getting ready for Stephen's first road trip and trying to get everything set and coordinated for nursing care for Stephen. I've started working one day a week doing some consulting and thought I finally had everything set and ready to go this morning with the nurse, but when 8am rolled around, there was no nurse in sight.

I spent weeks trying to get Stephen nursing when he first came home from the NICU, eventually gave up, then got offered this job, so fought again to get him nursing and thought it was all taken care of and then poof! Back to the drawing board. I even spent over two hours with the woman yesterday afternoon training her and showing her all of Stephen's medications and things. And another hour with the nursing agency doing paperwork. The full story is yesterday I did get NOT get the warm and fuzzies with this woman. She had a little bit of an attitude with me and was not warm and friendly, but she seemed to be knowledgeable and was really good with Stephen. And more importantly, he seemed to like her. So I figured I would give her the benefit of the doubt and try today out. But just before 8am, I got a phone call from her that she was stuck in traffic on the Beltway and didn't know how long it would take to get here.

Seeing as how I only work one day a week, Bill told me to go and he would wait for her. But by 9:30am, Bill needed to go to work too (especially considering his Blackberry bit the dust). The nurse was lost, didn't know where she was, couldn't figure out how to get her GPS to get her here and when Bill called her to try to help, she snapped at him and that was it. So little Stephen went to work with Bill, my Mom jumped in the car and drove down from PA (she was headed down here tonight anyway to help me pack up for our trip), and I left work a few hours later to pick up Stephen and meet my Mom at our house so she could watch him while I worked from home. What a total cluster!!!!! And on top of that, I had dropped Mabel off at doggie daycare in the morning and paid for a full day because the nurse didn't feel comfortable with the dog. And poor Mabel...she really gets the short end of the stick because she HATES doggie daycare. It's like torture day care to her. I tell ya', I think we seriously have the worst luck in the world!!!

So even before day #1 began, the nurse has been fired and we're seeking a replacement. I can totally understand and sympathize with her on the traffic thing. That happens and you can't do much about it. But the attitude thing and not even apologizing for being over 2 hours late on your first day....not cool. But maybe it's for the better. I'm hopefull that they'll find someone who is a little more warm and courteous. It's hard enough leaving your child alone with a stranger, but when you don't feel 100% comfortable, it's not good.

But on the flip side, I'm super happy to be back at work! This will be my third week back. Bill and his Mom tag-teamed with Stephen the two weeks prior and did an awesome job! Although maybe one day I'll share the story of how Stephen ended up in the ER on Mommy's first day back at work :)