Sunday, July 29, 2012

False Alarm

Yesterday we got our first real taste at what it's like to be be an active transplant recipient!  We came so close to getting a kidney!  So close in fact that we were completely packed and ready to hit the road to Philadelphia!!  But obviously, it wasn't meant to be or else this would be a very different post!!

Yesterday morning, Bill, Stephen and I were out and about running some errands when I got a call at  noon on my cell phone from a 215 area code.  I instantly knew it was someone from CHOP and the adrenaline started pumping!! The person on the other end of the line was another transplant coordinator from the nephrology department, Kathy, telling us that a kidney had become available and she thought that Stephen had a very good chance at receiving this kidney.  The donor had been a very freak accident, but that they were a very healthy adult and the kidney was in fantastic shape.  Her exact words to me were, "if Stephen was my child, I wouldn't hesitate for a second giving him this kidney."  I think my words back to her were something like, "OH MY GOD!! This is amazing!!" We even joked about how Stephen had just been listed on Thursday afternoon and that she thinks we might have set a record for the quickest call!

She went on to explain that Stephen is currently fourth on the transplant list behind three other children.   One of the children is on the transplant list for a second time (they have already received one transplant previously) and might not be a match because their antibodies are higher than what Stephen's would be.  Meaning that it is harder for that child to find a match and Kathy thought that they might not be a match with this donor.  One of the other children in front of Stephen needs both a pancreas and a kidney, and she had no information about the donor's pancreas, so she wasn't sure that child would be a match either, and we didn't get any information about the third child.  And even though there were other children in front of Stephen, she advised us that this could be Stephen's kidney and to be ready to go when the time came.

She also told us that Stephen is listed for at least a 3 out of 6 antigen match.  Meaning that because we are continuing our search for a living donor and have started the kidney paired matching process, Stephen will only get a deceased donor kidney if it is a near perfect match.  We were told that the cross matching process would take a few hours, 3-4, so we wouldn't know anything more for a couple of hours.  But to go home, pack ourselves and Stephen up (since we hadn't yet backed a "to go bag" or anything), and be prepared to leave for Philadelphia if in fact Stephen was to get this kidney.

We hung up the phone and didn't really know what to do or think!!  First off, it was insane that it happened that fast!! We never ever expected to get a call that quickly!!  I think that might have been a record! And secondly, do you get excited, nervous, scared, or what?!?!  Stephen might get the kidney, but he might not.  I started out very excited, but after I had finished packing and the real waiting began, I got very frustrated and anxious.  At first, I was really convinced that Stephen would get this kidney, because Kathy sounded so sure that the other children wouldn't be matches.  But it was just so hard to believe that it would take over 4 hours for the lab work to be completed and until they determined who would get the kidney. From the time the initial calls are made to the donor to the time they prep for surgery, about 8-10 hours will elapse.  Which is kinda crazy! You'd think that they would need to get the organs into the recipient faster than that, but I guess not.

Right around 5 pm, five hours after the initial phone call, we heard back from Kathy, that all four kids were matches for this kidney.  It was definitely disappointing that things didn't work out, but also wonderful to know that one of the other kids was going to get the kidney.  And Kathy also told us that she thinks Stephen will receive a kidney sooner rather than later.  They put a strong preference to children that are very young like Stephen.

It was such an emotional roller coaster of a day!!  It's hard to be that upset about not receiving the kidney when you know that one family is devastated at the loss of a loved one, but then on the other hand, look at the other lives that are going to be saved!  And some sick child is going get the chance at a healthy life.  It's just such an amazing thing!  And I now can say without a shred of a doubt that I fully comprehend the importance of organ donation.  Whoever the donor was, is an amazing person and made such an awesome choice to be an organ donor!

And at least now we know where Stephen is on the list and we're one step closer to that top spot!!!
Click here to register to become an organ donor

Tuesday, July 24, 2012


Well the old saying, "One door closed, another one opened," certainly held true today! We got awesome news from Stephen's transplant team at CHOP today!!  We now have not one, not two, but three transplant options now!!!  We went into today with only one option available to us; a non-related living donor.  But we ended the day with two additional options; cadaver kidney or a paired kidney exchange.

A cadaver kidney (a kidney from a person who has passed away and is an organ donor) has always been part of the thought process, but it's now a reality because Stephen was activated on the transplant list today!!!  It's a huge accomplishment!!!  It's taken a lot of blood, sweat, and tears (literally!!) to get Stephen big and healthy enough for this point, and we finally made it!!  Stephen has been listed as inactive on the transplant list until this point because we were still working out any bladder issues and we had found a potential donor.  But since completing all the bladder tests, the transplant surgeon was happy with the results, so decided to go ahead and activate him.  This essentially means, that we could get the call at any time that there's a perfectly matched kidney for Stephen.  Tomorrow, next month or two months from now.  Anytime!!  Although life will change a bit now not being able to travel more than a few hours from home, the thought that we could get a phone call at anytime is so exciting!

Our other option, paired kidney exchange, is just as exciting!  From the very beginning, we knew neither of us were Stephen's blood type, but had high hopes that we would be able to donate one of our kidney's to a family in need of a kidney that was either A or B blood type; and they would donate an O kidney to us.  But when we went to CHOP last November for our initial meeting with the transplant team, we learned that CHOP was not a participating hospital in the paired kidney exchange.  But we found out today, that very recently, CHOP had been approved as a participating hospital!  Apparently it was a money issue that precluded from participating before.  You have "buy into" the program, and the funding just wasn't available...until now!  So both Bill and I gave them a blood sample while we were there today to start the process of determining if we would be a match for another family at CHOP or the University of Pennsylvania, or one of the other participating hospitals.  This is also so huge for us!!  In a perfect world, this would be the choice we would choose.

But while we wait on the transplant list and do the medical work-up for the paired kidney exchange, we will also continue our search for a living donor.  The transplant team still feels that a living donor will give Stephen the best chance and will hopefully last him into his early adult life.  So for those of you still interested in being a donor, you should hear back from JoAnn very soon (and if you emailed me and haven't heard back from me I promise I'll will respond ASAP!!).

Once again, life has proven to be a giant roller coaster ride!  We went from having little hope of finding a living donor to now having a multitude of options!  It just goes to show that there is definitely someone out there looking out for my little Superman and answering all those prayers!

I have to say, the outpouring of support and love for Stephen is just mind blowing! Since creating the Facebook page on Saturday, we have gotten over 188 likes and I've received countless emails from people wanting to be tested as potential donors for Stephen or just saying how much they are touched by Stephen's story.  JoAnn told me today, that she received 5 phone calls regarding Stephen yesterday alone!  It's just unbelievable!  The generosity and kindness from everyone is overwhelming.  I wish I could come up with something better to say than "thank you" but I'm at a loss for words.  I hope that one day we'll be able to re-pay all of the love and pay it forward to others.

Monday, July 23, 2012

Transplant News

I have been waiting a long time to write this post and I'm sorry for keeping everyone in the dark somewhat regarding our transplant process.  My hope had been to write this post with exuberation and in celebration of the fact that we had found Stephen a kidney donor; and up until Saturday, that was still the plan.  But unfortunately, things have changed, and our news, although not totally terrible, is not what I had hoped it would be.

I had not been sharing much of our transplant donor search with everyone until this point, out of respect for our potential donor and for their family's privacy, and also because I knew nothing was set in stone until we had an actual date schedule for surgery.  A few months ago, one of the few people that had done the initial cheek swab test, came back as a near perfect match for Stephen.  I think we found out right around Easter that they were an initial match.  It was around this time that we stopped testing other individuals, because once you have a potential donor begin the medical evaluation, insurance will no longer pay to test other possible donors.  And we didn't want to jinx anything, so we sort of stopped "announcing" our hunt for donor, but also didn't want to remove the information from the blog, because we didn't want people to forget that we were still searching for a donor.

After a few discussions, our potential donor graciously decided to go forward with the medical evaluation and traveled last month to the University of Pennsylvania to complete the two days worth of tests.  We still knew there was a possibility that they wouldn't be a medical match, but felt pretty good about our odds.  But unfortunately, we received the news on Saturday morning, that they were no longer a match for Stephen.

It's been a bit of a shock and we're definitely disappointed, but we have to move forward and start our search again.  We feel that maybe there was a reason it didn't work out and that there's still a perfect match out there for Stephen.  For those of you that are on Facebook, this is why there has been a flurry of activity over the weekend and the creation of a designated Facebook page to help find Stephen a kidney donor.  And like in the past, so many people have stepped up and shared our story and I've already received a handful of emails from people that are wishing to be tested.

This has been a setback, but I think a minor one in the grand scheme of things.

We just hope that through our Facebook page and the blog, someone with a HUGE heart and a perfect kidney for Stephen will come forward. So please share our story with friends, family, co-workers, etc and help us get the word that Stephen still needs an O blood type kidney donor.

If anyone is interested in being tested, the best thing to do is contact the transplant coordinator at CHOP; JoAnne Palmer.  Her contact information can be found on the right hand side of the page.

The easiest way to help us is "like" our Facebook page, Stephen's Journey, and re-post it to your wall or just simply share our blog.

We appreciate all the continued support and prayers for Stephen and are moving forward to the next hurdle ahead!

Thursday, July 19, 2012

Not As Expected

Today has been another roller coaster ride of emotions and I've found myself on the verge of tears a few times.  Not because there's anything"wrong" with Stephen right now, but because of the situation we are in.  From the outside everything looks great.  Stephen's healthy right now, he's progressing wonderfully in terms of speech and motor skills, and has become a beautiful little boy.  But some days, it's just overwhelming what we've been through and what we still have to go through.  There are still mountains to climb not only in the near future but our distant future as well.  And we're now just in a holding pattern which is difficult.  And it doesn't help that I'm 100% type A and love to plan ahead...for everything.

Last week Stephen's VCUG went really well.  I tip my hat to the whole crew of folks at Fairfax hospital who helped out during the procedure.  The radiology tech was great and she remembered Stephen from past visit, the child life specialists who we hadn't actually met before was fantastic, the nurse who put in his catheter was good and quick, and the radiologist explained everything as she was taking pictures and was very kind.  Sometimes things don't go as smooth at the hospital and I had prepared myself for the worst, but they did great!!

Stephen did pretty good as well.  Bill came along to give me an extra set of hands which was a HUGE help!  Having an extra person to occupy the little person is key.  And while I talked with the techs, nurses, and doctors, Bill got him oriented to the room which I think helped.  He did cry a lot and hated to be held down the whole time, but all-in-all, I think it went really well.  And when I picked him up after the procedure was over, he peed on me (expelled the remaining fluid they pushed into his bladder)! Which was pretty darn cool!  Most Moms don't get to say they like being peed on :)

We did learn though, as expected, that Stephen's bladder is teeny tiny.  His bladed only held about 35 cc's of saline before he started peeing it back out.  A bladder of an 18 month old should hold about 135 cc's of fluid.  So we're way off in that regard.  But that's exactly what we expected.  He's never ever used it.  But being able to see his bladder and the ureters fill and empty was an awesome sign.

Today, we had our follow-up with the urologist, Dr. Pohl, to go over the results.  After the VCUG, we kind of assumed that Dr. Pohl would tell us that the results were exactly as he expected them to be and that from a urology stand-point, Stephen was cleared for transplant.  That we wouldn't need to put a catheter into Stephen's bladder and stretch it prior to transplant.  But that's not what happened today.  Dr. Pohl looked at the film, came back in, and told me that he'd like to confer with his other colleagues before making a decision on whether or not we would have to go forward with the catheter surgery.  I honestly was shocked.  I just didn't expect him to say that.  I'm sure he saw my face pretty much fell when he told me that.

What I didn't realize before today, was that if Stephen's bladder doesn't fill and empty appropriately after the new kidney is connected to the ureters, the urine could actually back up into the kidney and essentially "kill" his new kidney.  I asked him if there's anyway to "install a valve (like my lay-man's terms?)" on the ureters to let the bladder fill slowly and stretch.  Unfortunately the answer was no.  All of the urine has to enter the bladder all at once.  So Dr. Pohl is going to chat with some folks about what they think and they're going to make a decision by Wednesday/Thursday of next week.

So the waiting game continues.  Another week until we know what's going on.

Ultimately, I learned something new today so that was good, but I wish this whole process could be sped up a bit.  We started the urology stuff back in April and it's now mid-July, and it still hasn't gotten straightened out.  Everything's on hold.  The transplant is still on hold and that means our lives are still on hold.  We can't make plans for the Fall (trips, weddings, football games), we can't move forward with trying to buy a house, I can't make decisions on whether or not to sign Stephen up for music/tumble classes or sign him up for co-op playgroup.  It's all these decisions that most people make constantly and never think twice about, but for us, we can't make them.  And it's so damn frustrating.

And to get back to where I started off at the beginning of this post, we want this transplant to happen a billion percent, like yesterday, but at the same time, it's so scary.  There's no telling what will happen.  Will Stephen do well in the surgery?  Will they find out his liver is a total mess?  Will his new kidney make life easier?  When will he be healthy enough to leave the hospital?  And how long will we have to stay in Philadelphia afterwards? And ultimately, will he remain healthy for 15-20 years?  Recently there was a little boy with ARPKD who received his transplant from his Mom in February and he out-of-the-blue started running a fever and two days later passed away from a heart condition.  These are worries that I carry with me constantly.  Every minute of every day.  Most days these thoughts are in the way back on my mind and rarely creep out to the front.  But today, for some reason, they're right there, front and center.

I know that no matter what happens, we'll get through it like we always have and Stephen will take it all in stride.  He is, after all, Superman!!!

Wednesday, July 11, 2012

Beachy Fun!

We're back from a trip down to North Carolina where we spent the 4th of July and a few days following the 4th enjoying some time at the pool and with friends and family.  Bill's parent's have a vacation home in a golf community, St. James, which is located just outside of Southport, NC and about a 10 minute drive from Oak Island.  We try to make it down there about twice a year and usually for the 4th of July, but last year we only made it down once over Labor Day.  Stephen was actually in the hospital last year over the 4th following his hernia and Mediport surgery and we were stuck there for about 10 days while they got all of us numbers and tummy back in shape.  But this year we were in the car on the way to the beach! 

Here was Stephen last year on the 4th of July:

 It was also his 6 month birthday.  You might remember, I attempted to be crafty a few times when he was in the hospital.

And here was the little guy this year and on his 18 month birthday:

A huge difference!  Stephen had an absolute blast riding around the cal-de-sac (when it wasn't blazing hot) in his new wagon!

Since we were traveling on the 4th down to NC (and it was so hot), we ended up having a very low key 4th of July at Bill's parent's house.  Stephen has yet to see any fireworks, but I think that's probably a good thing right now considering how loud noisy things and strangers scare him.  He's really into this stranger-danger/anxiety/shy thing right now.  But I heard we missed out on seeing some celebrities down in Southport.  John Dummell, Fergie, Julianne Hough, Gwyneth Paltrow, Hilary Swank, and Robert Downy, Junior were all in town shooting various TV shows and movies in the Southport/Wilmington area.

We also spent some time enjoying the pool this year which was so great.  One of the pools in St. James has an awesome kiddie area with fountains that Stephen loved to play in.  He had a blast walking through the fountains and sitting on the ground with his bucket and watering can playing in the water.  He's still not really into his raft, but he likes to be held and splash in the pool.  And this year we decided to introduce Stephen to the beach for the first time.  We went late one afternoon after it had cooled off a bit and Bill took him out in the water and into the waves.  Despite the rough water, he loved it!  The sand on the other hand was a different story, but I kind of expected that.  He wasn't too keen on sitting in the sand, but I think overall the beach was pretty cool.  And I feel much more confident taking Stephen to the pool which is a major plus as well.  We've got a routine each time we get ready for the pool and routine for "cleaning up" afterwards.  It seems to work best for me to change his wet PD cath and gtube dressings and put him into dry clothes before we head home and then he can just go down for a nap when we get home.

Thank you to Kristin and Tish for taking pics of us at the pool and beach!!!

Vacation of course was way too short and Bill spent a lot of it working, but it was still nice to get away for a few days and leave the hustle and bustle of Northern Virginia behind.  And I worked a lot on my tan during nap time, which was the goal for me!!

Now it's back to business as usual for Stephen and I with appointments every day including his VCUG on Thursday at the hospital.  Hopefully all will go smooth without any major meltdowns (which have been par for the course lately).  Yesterday I was feeling like my adorable little boy was either possessed by the devil or we are have early on-set terrible twos (especially at 4 AM when he woke up and decided to stand up in his crib and scream for an hour and half...two nights in a row!).  I'm keeping my fingers crossed it's a just a very very short lived faze!

Hope everyone had a lovely 4th of July!!

Monday, July 2, 2012

Where to Start

I'm not really sure where to start since we last left off.  I didn't realize the last post was from Stephen's surgery.  Yikes!  Well...we've been back and forth from Virginia to York, PA twice, multiple trips to the doctor (both pediatrician and nephrology) and way too many phone calls and after-hours doctor pages to even count.  

Stephen healed wonderfully and did really well with the surgery once we were 24 hours post-op.  Everything has healed very nicely and it's nice to see how things are supposed to look "below the belt."  From a urology stand-point, we have Stephen's VCUG procedure (an out-patient radiology study where he'll be catheterized to determine bladder size and capacity) on July 12th and then meet with the doctor the following week at his office downtown at Children's National hospital to review the results and come up with a plan for what to do next to get his bladder ready for transplant.  I'm looking forward to making the trip to Children's National (it's actually fairly close to our house) to see what the hospital is like since we've only ever been to their Northern Virginia outpost.

We've made a lot of changes and have been battling some things in terms of his kidney care and nutrition.  Stephen's blood pressure is still high, so they added a medication to his regime that should act in conjunction with his current blood pressure medication to help bring it down and we've been switching up his dialysis solutions on a day-to-day basis to try to pull off some extra fluid, but at the same time, avoid getting him too dry.  It's been a daily struggle, but it's a decision that's been left up to me, and I don't always feel comfortable making those decisions.  But the veteran dialysis nurse just recently retired, so there isn't the same decision making process happening right now (we won't go into the whole big mess, but let's just say, the transition has been more than rocky).  Regardless of that though, his blood pressure is still high.  It's riding right around 140/82 right now which is extremely high for a toddler.  It should be down around 105-110 systolic. So I've been forced to be much better lately at taking his blood pressure (which is a good thing) about 1.5 hours after dialysis ends in the morning and right before bed.  And then based on his bedtime blood pressure, I either use 1.5% solution (if the pressure is good) and a mixture of 1.5% and 2.5% if it's high.  But Stephen is very sensitive to the solution changes and I'm always so nervous I'm going to get him too dry and we end up at the hospital.

We've also added extra calories to Stephen's formula, and he's been growing more the past couple of weeks.  He had somewhat plateaued so they increased his calories, his volume of formula and his growth hormone.  And I think it's worked.  His weight is definitely up and I feel like his pj's are getting shorter :)  And we've switched some of his day time feeds from pump feedings which were going over 45 minutes to bolus feeds which are more like 15-20 minutes.  I just push the formula into his tube slowly which a big syringe.  I've been doing this with the hope it will make Stephen hungrier between feeds and thus want to eat and drink more by mouth.  It's still a very big daily struggle to get him to eat anything, but I did have great success one night while we were in York where Stephen ate about 10 bites of raspberry gelatin from Rita's!  Here he is in the car with his Rita's face:

It was such a proud Momma moment :)

Typically, I'm lucky if I can get him to eat a few chips or crackers a day.  He tends to only go for crunchy, salty foods, so we've been rotating between Bugles, no-salt saltines, veggie chips, and goldfish.  And his favorite things to drink right now are water, unsweetened ice tea, and he took a few sips of apple juice the other day.  Mornings are his worst time for eating and afternoons, right after nap and evenings tend to be the best.  My guess is he might not feel very good after dialysis in the morning.

But the really fantastic things that are happening is his walking, crawling and talking.  His crawling and walking have taken off and he's getting really close to walking on his own.  He still likes to hold both of your hands when he walks, but he can definitely do it with one.  And he now does circles around the living room walking from the couch to the stairs to the wall to the recliner, down the coffee tables against the other wall and then to his toy chest where he can then make it back to the couch.  And he's now totally getting himself up off the floor by himself; from sitting to crawling to standing.  So he's making huge headway on his catching up!  And we now have about 5 or 6 words in his repitoire; "bye bye" being the most favorite!  Stephen also got to spend some time with his cousins and really loved playing with Norah.  He's definitely at the stage where he could benefit from spending more time around other kids.  Here are some great pics from our first trip to York, a video of him chasing the girls down in the driveway, and a video of Norah playing with Stephen and getting a kiss from him.  I can't even get a kiss from him!!  He's going to love these pics/videos when he's a teenager :)

And then....I get to this past week.  While we were in York two weekends ago, Stephen's catheter came apart while I was changing the tape on it.  I clamped it very quickly and my Dad was right there to be able to wash his hands and put it back together quickly, but I was obviously very concerned about the possibility of an infection. So I paged the doctor and we decided I would bring him in as soon as we got back and take a sample of his PD fluid and start a course of antibiotics to prevent any bugs from growing until the culture came back.  We did the sample Wednesday afternoon, but the lab couldn't use it (go figure), so we had to do another one Thursday.  And then we didn't get the antibiotics until Thursday.  So he got a dose Thursday afternoon, Thursday night in his dialysis solution, and then Friday.

But as luck would have it, the DC Metro area was hit by the largest non-hurricane storm in history Friday night about an hour after dialysis began.  We lost power and as such, Stephen lost his dialysis Friday night.  When we woke up Saturday morning, there was still no power and no sign of it coming on anytime soon.  Not only was the power out, but so were the phone systems and subsequently the hospital's phone and paging system. (we even drove over the to hospital to page the doctor on call but to no avail).  We later learned that 911 in all the surrounding counties was also down.  And to top it all off, my parent's were coming Saturday morning to babysit Stephen overnight so we could attend a friend's out-of-town wedding.

So we made the best decision we could, and took Stephen back to York.  We quickly packed up everything and the dog and hit the road.  But later that evening around 4pm, when I went to set-up Stephen's dialysis machine, I realized I was out of one his antibiotics; vancomycin.  I frantically paged the doctor,  but of course the phones still weren't working.  And then began calling pharmacies in the area to find it.  But because the form that Stephen requires is an IV drug, no one had it.  Our best course of action was to take Stephen to the ER and beg to get a dose.  So that's what we did!  Thankfully, the nurses and hospital staff at York Hospital were wonderful and accommodating, and the nurse practitioner in the ER was familiar with peritoneal dialysis and pleaded our case to the pharmacy.  We lucked out and got one dose of the drug and were in and out within an hour.  They were so amazing and so nice and so good with Stephen.  I can't say enough good things about our experience there.

Once we got the dose of vancomycin, we were back in business.  And even got a chance to have a nice "date night dinner" out while Mimi and Poppy babysat.  And we got word from our neighbors that the power was restored to our neighborhood around 7 PM Saturday night.  So even though it was a very stressful couple of days and everything seemed to be going wrong, we actually lucked out that we were able to find refuge 2 hours away in York and that our power was restored.  Every single neighborhood surrounding us is still without power (I'm writing this Monday, 7/2 @ 2 PM) with the exception of Shirlington Village.  The traffic lights are all still out and as of this morning, the phone systems were still down in and around the hospital.

So now I've just been running around like a crazy person trying to refill prescriptions and make sure we have adequate supplies for our next trip; heading to NC on Wednesday to Bill's parent's house at the beach.  Hopefully we'll get a break from this heat down there and be able to kick back a bit and enjoy some time at the pool!  I think all three of us deserve it! :)