So Good to Be Home

Well at least back in out temporary Philadelphia home �� The minute we walked in the door, Stephen was a totally different child. It was insane! He walked right over to his toys and started playing. He could badly get him on his feet in the hospital, but once we were out of "that scary place" he was feeling much much better. Now that's not to say we haven't had a few tantrums, but they've been typical 2-year old tantrums and not the scary crazed tantrums. He's been playing, talking more, walking more, and overall just feeling much better. And he's been peeing like crazy!

Tomorrow morning we had back to CHOP for our first transplant clinic appointment which includes lab work to check his Prograf level (Prograf is one of the three anti rejection drugs he'll take for life), a blood pressure check and a check up to make sure everything is good. We also got a call this afternoon that his nephrologists and urologist have decided that they want to take the Foley catheter out, which was a huge surprise. They originally said he'd have it for at least three-four weeks. So that means no more restriction for bath time (you can't submerge it in water) and no more having to double diaper. I've been cutting a hole on the inside diaper to put the catheter through so that it stays cleaner. The outer diaper catches all of the pee, while the inner diaper catches all of the other stuff. It's worked out really well, but it sure is a pain in the butt when you're changing a diaper at 3 am! Plus, then it's one less moving part hanging off of Stephen's body.

Being home has also been good for learning all of Stephen's new medications and his new feeding schedule. The medications have been pretty easy with the help of a program called MyMedSchedule.com. It keeps track of all of Stephen's medications, all 12 of them, and lets you print out a sheet that sorts them in all kinds of ways including by time. It's been really helpful. Although, nothing will help you if you oversleep and miss your meds which almost happened this morning! We were up with Stephen a few times in the middle of the night and ended up sleeping in until almost 9 am when he is supposed to get his anti rejection meds. So now I've got an alarm set on my phone for each morning; just in case! I don't have his feeding schedule down as good as the meds (they increased the volume compared to what it was pre-transplant and there's been a lot of trial and error trying to get it all in without making Stephen puke), but we'll get there eventually.

Other than that, Bill has been catching up on a lot of work stuff, I've been doing lots of laundry, and unpacking and organizing the apartment, and we spent a few hours this afternoon walking around the city and enjoying the summer weather. It was really great to get out in the fresh air, stretch our legs and explore some of the parks near us.

I also just wanted to put this out there; if anyone has any questions what-so-ever about Stephen's transplant, recovery, or anything else, please feel free to leave it in a comment and I'll answer them all in blog post. I feel like I might have skipped over a lot of stuff and wanted to make sure that if anyone was curious about anything, that you should please ask. Im happy to answer any questions!!

Below are a few pictures from yesterday and today. The first is a picture of just part of what we had accumulated during our 13 day stay at CHOP and then a picture of Stephen as we were leaving the hospital. Then there's a picture of his nightly medications all lined up. It's a lot, I know! And the last two are him using a new "cup" that came today. The speech therapist we saw in the hospital suggested it as a way for Stephen to learn how drink from a straw. Is basically one if those squeeze bear that come with honey and a piece of soft rubber tubing for a straw. As soon as I took it out of the package he loved it! Hopefully this won't become one of those once and done deals! Oh and I added a really cute video of Stephen popping bubbles this morning to our YouTube channel. You can find it by searching for "lschwartz531" on YouTube. Enjoy!

GOING HOME!!

We've finally got the news we've been waiting for....WE ARE GOING HOME!!!!!

We made the final decision this morning during rounds that we're ready
to break free and get the hell out of the hospital. The past few days
(Friday through Sunday) were really rough; hence the lack of posts,
but I truly believe that once we get out of the hospital environment,
things will settle down and we can fall back into a semi-normal
routine. Things were really stressful over the weekend because Stephen
was still having these eposiodes of unconsolable tantrums that were
lasting hours. And it became this guessing game of what was causing
the episodes. The doctors, the nurses, and Bill and I were only able
to guess whether or not they were caused by pain, drug interactions,
constipation, or anxiety. I started tracking them to see if there was
some sort of pattern, but it didn't really help that much. It just
got exhausting not bein able to do anything for Stephen. The only
thing we could do during these episodes was to either put him in the
crib and let him thrash around or put him on a mat on the floor. And
then we would spend all day and night speculating and talking about it
in top of not really getting any sleep. It's been a rough road to say
the least.

I think it was on Sunday evening or Monday morning that I finally said
to stop the IV pain medication, Nubain, and see what would happen. We
couldn't go home on nubain anyway, so if we wanted a shot at getting
out of the hospital, we'd have to ween him off that one anyway. And
then we started weening the oxycodone yesterday as well. So now we're
just down to tylenol. But honestly, I think he's really just having
issues with the steroids. In the past, he's had some trouble with
steriods and other drugs, so I think it's just going to be a long
adjustment to taking predisone every day. Eventually the dose will
get lowered, week by week, to where he's on a very low dose every
other day, but it will take a while to get there. So in the meantime,
we're just going to have a very crabby toddler every morning (he gets
the prednisone once a day in the morning at 8am).

We've also gotten all of his medications now and had some training
with the pharmacist on how and when to give them all. We're obviously
used to adminstering lots of medications, but now his medications have
to be given at pretty exact times, some on an empty stomach and they
have to be coincided with his twice a week lab work. So it's going to
take a little time to get a routine down at home and plan ahead when
we want to go places (not only taking his feeds, but also
medications). But I like the challenge of coming up with a new
routine and a new way to organize everything and figuring out how best
to make it work for us. It's the OCD in me.

I can't sugar coat this transplant journey; it's been really freakin'
hard. Way harder than I ever imagined it could be. I think you tend
to latch on to the good stories and think about other people's really
bad stories, but you don't really tend to let those middle of the road
stories stick in your head. Again, coming back to that whole managing
expectations thing. At times throughout the past 13 days, I've
definitely thought that maybe we made the wrong decision about doing
the transplant now. It's been so incredibly hard watching Stephen
struggle through his recovery when just a few days beforehand he was
such a happy, active, fun toddler. There were a whole lot of tears
and some moments of pure frustration and anger, but a good amount of
joy too and so much to look forward to for Stephen's future and for
our future as a family. Plus we're heading home with one kick add
kidney that making pee like crazy!!!

But I must say that one of the most overwhelming parts of this has
been the outpouring of love and support from family, friends and even
complete strangers. We can't thank everyone enough for all the
prayers, thoughts, messages, texts, emails, blog comments, cards, and
gifts. They've all meant more to us than you could ever know and have
been an amazing distraction for all three of us. One day Stephen will
get to read all of the notes and see all of the pictures of the hands
and messages and I can only imagine how he'll feel knowing that so
many people really loved and cared about him. I know as his Mom, it
makes me incredibly proud and honored to have such an amazing little
Superman as my son. Thank you all!!!!!!!! xoxo

Sunday Funday

Oh my I just saw someone's comment that I hadn't posted all weekend; oops! But I do have a good excuse...Stephen did not have good day yesterday or this morning. But thankfully, he had a great rest of the day today and is currently sitting on the couch in our room on his Daddy's lap and right next to Nana.

We still have night rounds and bedtime to get through, so I won't get into all the details right now, but I'd love to share some great pictures from today of Stephen taking his first steps since the surgery and having fun playing hockey and taking a stroll outside of the unit. Bill and I were even able to get for a bit and have lunch outside of the hospital while Stephen played with Nana. It was a nice break to mentally recoup. I'll share more details of our weekend in a bit. But in th meantime, enjoy the pics!

He's Back!

I feel like a broken record, but our little boy is back! He turned things around last night at 10:00 PM, when he woke up from a long nap through yesterday late afternoon and evening. It started with him asking for ice and then he wanted to play with his Thomas flashlight and then he allowed the nurse to hangout out with him and gave out some fist bumps and high fives. He woke up a few times throughout the night, but pretty much slept right on through until 7 am this morning. I actually found him sleeping sideways in the hospital crib this morning around 5ish. Unfortunately, I was still asleep when the new nurse started this morning and the first round of doctors came in, so I wasn't able to run interference right away between them and Stephen and he got a bit agitated this morning. But today he was able to get it under control and I made it very clear to everyone that he needed his space and not to crowd over him. I think a lot of what was going on yesterday was sheer anxiety and being scared that people were going to mess with him every time someone came in the room. It's funny, it's like when you tell people that your dog doesn't like people and he might bite, but they think "I'm good with dogs" and still try to pet the dog. That's what was happening this morning! Just leave my kid alone until he's feeling better! I'm not kidding when I when I say he's scared! But the cocktail of adavan, Tylenol, oxycodone, nubain, and ditropan (a balder relaxer) is definitely working. The pain team wanted to start weening him off the pain meds today, but his pain has only been under control for less than 24 hours, so we put the stops on that. He needs a full day to rest, relax, and recover.

Stephen did get a good morning nap and then had some special visitors and was able to get out of bed for the first time. Kristin, Stephen's amazing donor and her husband Matt, came by for a visit before they left Philadelphia. Kirstin is going to DC to spend a few days recovering at her brother's house before she comes back to Philly for her two week follow-up appointment and then finally be able to go home. It was great seeing them again and it was perfect timing that they were here when physical therapy came for the first time and got Stephen up and out of bed. He's obviously been out of bed in our laps before, but he made it the whole way to the couch today and she tried getting him on his feet for a little bit! Stephen actually ended up having a blast sitting and playing with some cool new toys, including a pair of super cool orange Flyer sunglasses!

After they left, someone was pretty sleepy, so he got back into bed and is now snoozing. But that's not all that happened today: Stephen is also starting back in his home feeding regime of bolus feeds during the day (which is a big deal) and the Head of Urology came a little while ago and unhooked Stephen's Foley catheter from the drain bag and is letting it drain right into his diaper! That's an enormous deal!! Because Stephen has never used his bladder, it's the size of a pea. So he needed a catheter that would drain all the urine directly out of the bladder as to not put any pressure on the stitches between the bladder and the kidney (the ureter actually). The surgeon originally told us that Stephen would have this catheter for close to 6 weeks and that it would need to drain into a bag and he'd have to carry this around everywhere he went which I knew would be a huge challenge with a 2 year old. But the Chief Urologist made the call that the bag and drain tube was actually a source of infection and it would be much better to just drain into the diaper. We practically jumped for joy when he unhooked that thing. It was a huge pain in the butt and actually really gross. The urologist, who knows our urologist in DC, is going to work on a plan with us, see us while we're here in Philly, and coordinate with the doctors back home on a plan for stretching Stephen's bladder. There was a whole lot of high-diving between the three of us when he walked out the door!

So now the only thing Stephen has tying him to his hospital bed is the maintenance saline flush keeping his accessed port open for blood draws and IV pain meds. And now that the catheter is draining straight into his diaper, I'm getting ready to start changing lots and lots of wet diapers! Yippee!!

Back to Crazy

Had another crazy night and morning..again. No sleep (all three of us), lots of pain, and too much activity/interruptions to get Stephen to calm down and mellow enough for the pain to subside. He actually fell asleep last night around 10 PM watching tv and I thought we were going to be good for the night, but by midnight, he was up kicking his legs crying and in pain. After that, we spent the entire night chasing his pain.

I had told the pain person who came in the evening that four hours between his doses of oxy was too long. The oxy was taking about 30 minutes to work and then only lasting for about 2.5-3 hours. So for that last hour, he was in a lot of pain. And then he'd get so worked up, that it would take longer for the oxy to kick in, and so forth. A vicious cycle. He did get a few doses of nubain in between, but it wasn't enough to get him through. I think somewhere around 4 am we finally asked them to give him a rescue dose of morphine, but by then, it didn't even touch him.

And then add the pain on top of his issues with GI right now, and it's become a really crappy situation. He's apparently extremely full of poop (I never would have guessed he was constipated, but the surgeon saw it while he was operating). So they've been giving him all sorts of things to try to empty his bowels, but the pain meds are working against it. And then every time he bares down to try to poop, it hits even more. Again, a vicious cycle.

And this morning while he was sitting on my lap, I notified the dressing on his central line in his neck was wide open again. So they finally made the decision to pull it out. That became a whole ordeall in itself (think total restraint while they pulled the layers of tape off and out of his air, cut the stitches and pulled it out of his jugular vein), but it's out thank god and I think it will make Stephen more comfortable in the long run. Unfortunately, it hasn't happened yet.

Aunt Jess, Chloe and Norah did come for a visit today, but with everything going on they could only pop their heads in to say hi. But Stephen did respond to the girls which was nice.

Unfortunately, stress is compounding upon no sleep which is compounding on watching your child writhe in pain over and over again and the feeling that he's so traumatized at this point, it can't be reversed which is equaling very short fuses. Something has to change today, or I'm going to lose it or someone.

Hangin' In

My apologies for no update yesterday. I actually lost my iPad charger when we left the PICU, so I had to track down a new charger yesterday. Thankfully, UPenn's bookstore proved to be the perfect place to find that sort of thing so I'm back in business!

Right now we're pretty much tweaking lots of things in order to get out of the hospital. They're still working on pain management, getting Stephen on his home rejection meds, and starting his nutrition. Up until now, the only nutrition he's had since the surgery has been TPN (IV lipids) and pedialyte. The goal Is to obviously get him on formula at normal amounts and rates. But it's been a very delicate balance of ensuring his stomach can handle it without making him puke. He did ask for some apple juice and water this morning and has been eating ice chips and I believe they're going to start some formula at a really slow rate later this afternoon.

They've also been working at managing his pain better. Yesterday he was pretty good and they were ahead of the pain, but last night we were playing catch-up after a traumatic dressing and he needed some morphine to get him through the night. The IV team decided it would be good to change his neck (central) line dressing at 11:30 PM while Bill and I were out to get some dinner. He hated it and fought it and was so scared by the time we were allowed in the room, but the damage had been done and he had thrashed so much that he was in a lot of pain by the time they were done. And then every time a nurse came him he freaked out. This morning the pain management team put him on oxycodone plus the Tylenol and Nubain he was already on and that seems to be working pretty well. Once it kicked in this morning, he was like a new kid! But you can tell when he's ready for another dose, so hopefully he'll take a fairly good nap (it's so impossible to sleep in hospital with all the people and alarms), and he'll feel even better this afternoon.

And they're still tweaking things to get his bowels moving appropriately and hopefully we'll start some physical soon and get rid of some of the IV lines so he can get out of bed and also get a bath. So we're kind of in that slow-and -steady thing right now while they tweak him up and get all of his systems working. He has some really good moments where he asks for books or toys or to watch Elmo, and other moments he's just really pissed. And I don't blame him! I would be pretty pissed too with 31 staples in my belly!

We did though have a special visitor yesterday! Kristin and Matt came by to see Stephen and to check in on him. Kristin has been sore and is also working on managing her pain, but she looked wonderful! And she had a follow up appointment next door today at UPenn, so we're praying for a clean bill of health for as well! And most importantly, the kidney is still working perfectly! His creatinine is at 0.2 which is near perfect and the levels of all his rejection meds are great. So we can be extremely happy and grateful for that!

Bill took these two pics last night while we were getting ready for bed and reading some books and the other picture was after a little hair wash. Still no estimate on when we might be able to go home, but I'm thinking we'd be really lucky if got to go home before Saturday.

Bye Bye ICU

We just moved out of the ICU! It kind of happened really fast this evening, but there was really no need for us to be there any longer. Stephen came off all of his narcotics and no longer needs any respiratory support, so they bid us farewell. He still will get some IV medications and things here on the renal unit, and they will oversee the starting of his feeds; his next big step. He still hasn't been given any food, so we'll see what happens when they start feeding him again. And then if that goes well, he just needs to get on doses of the immunosuppressant drugs that are acceptable to get at home. My goal is to be out of here by the end of the week. Not sure if that's possible (the resident looked at me like I had two heads when I said that), but it's a goal!

Hopefully tonight Stephen will finally get good sleep since he won't be constantly woken up like in the ICU and so will Bill and I. Ha!

Here's the little guy in his cool hospital gown right before we left the PICU. A wonderful charity called The June Brandy Foundation provides them for children going into various types of kidney-related surgeries. He's still pretty dopey, but is slowly coming around after getting all of those narcotics yesterday.