Tuesday, November 29, 2011

And again

The past two days have been two of the most stressful days in recent months.  Everything seemed to be going great after we got home from the hospital last Friday, but everything went down the crapper Sunday night.  Sometime around midnight or 1 AM, Bill went in to pick up Stephen from his crib and rock him a bit and soon after I got a panicked, "Lindsey come quick!"  Bill and Stephen were both soaking wet because his catheter had literally fallen apart.  In the middle of a dwell, his catheter came apart at the seams.  There's is a connection between the catheter tubing that comes out of his belly and the connector piece and some how that connection came apart so all of the fluid that was dwelling in his belly had come out and he was now open to the air and germs.  I tried as best I could to patch it up and we called the doctor to find out if we should take him to the ER.  Because he was already on antibiotics from the peritonitis, she didn't have us bring him in, but we stopped dialysis and I was told to bring him to see the dialysis nurse in the morning to get it repaired.

Monday morning his dialysis nurse repaired the catheter and gave me the news that I'd need to get Stephen home and hook him up for dialysis for the remainder of the day and night; 18 hours.  That meant that Stephen was "chained" to his bed and surrounding area for the next 18 hours.  Not an easy feat for a 10 month old.  Lucky he wasn't feeling good again yesterday and took a really long nap and Bill's Mom came over to help me occupy him for the rest of the time. 

But then lightening struck twice today.  This morning I checked in with nephrology and was told that Stephen would need to be on 24 hours of dialysis today to try to get rid of the extra germs he got from the catheter breaking. But when I connected him again this morning at 10AM, his catheter line was full of bubbles and air; signaling to me that something wasn't right.  I searched and searching and finally find it....a small hole in catheter.  AGAIN!!  That's what caused his peritonitis back in April!  But because we repaired his catheter once before, repairing it again would really shorten it and I was sure they were going to admit him to the hospital to replace it.

Luckily his dialysis nurse was able to repair it today with an extension, but it's only a short-term fix.  The catheter needs to be replaced and that means another surgery for my little man.  We're hoping that they'll be able to fit him into Dr. Kim's (Stephen's surgeon) schedule next week, but the big caveat is that he can't have any kind of infection.  And it might take a week or so until we can get all of the infection cleared out of Stephen's belly.  So in the meantime, we're back home, Stephen's on dialysis and playing on the floor next to his crib, while I finally grab a few minutes of "peace" in his rocking chair (if that's even possible). 

But I made it crystal clear to his doctors today that this surgery better be done in time for his to be home for Christmas because there is not a chance in hell that I'm going to let him be in that hospital for another holiday, and especially not Christmas!!

We got back to see the nephrologists tomorrow, so hopefully they'll have conferenced with the surgeon and come up with a solid game plan. 

Saturday, November 26, 2011


So I have to apologize for surprising everyone with the news we were back in the hospital and then not updating at all with what was going on. Wednesday was an insanely long day and Bill and I never got to sleep Tuesday night and didn't get to catch any zzz's until Wednesday night when we got home from the hospital. Then Thursday was another long day (and an emotional roller coaster for me with Stephen in the hospital on Thanksgiving day) and by Friday morning, we were getting the news that we could go home. So it was a whirlwind of a few days.

Basically, Stephen had/has peritonitis and because he made sure to tell us, we were able to catch it quick enough that it didn't get too bad. It was bad enough obviously to cause a hospitalization in the PICU, but not as bad as it was back in April. We're still treating him with three types of antibiotics in his dialysis fluid at home, but he's 100% better. Although unlike the last time, he was in A LOT of pain this time around. They had to gave him both Tylenol and a narcotic pain killer to make him comfortable and so that he could sleep. But by the time we reached his room Friday morning, he was back to his normal self and feeling well enough that we could take some laps around the PICU in a cool car.

Here are some pics of the big guy when he was feeling pretty good. And each day he seems to be feeling better and his dialysis output gets clearer, meaning the infection is getting wiped out. And hopefully tomorrow we'll get confirmation as to what type of bug Stephen got.


We came home yesterday afternoon and are settling back into our normal routine. I feel like we totally skipped Thanksgiving even though we had turkey, so I'll have to get a Thanksgiving post and some pictures up later today. But we're so thankful that this hospital stay was reasonably short.

- Posted using BlogPress from my iPhone

Wednesday, November 23, 2011

Not Again

It's 4:15 am on Wednesday morning and Stephen was just admitted to the pediatric intensive care unit (PICU). He's got a really nasty case of peritonitis. No idea how he got it but he spent almost 6 hours crying tonight so we knew something wasn't right. We brought him in around 2:30 am and we're now just waiting to be moved upstairs from the emergency room. Looks like we'll be spending another holiday inside the confines of Fairfax hospital. How depressing.

Friday, November 18, 2011

Transplant Meeting

I'm not really sure how to exactly sum up the past 30 hours except that they've been really long and exhausting and confusing at times I guess. I definitely don't feel super excited and super hopeful leaving CHOP as we did last year when we left, but I'm also not feeling totally letdown or dejected. I guess we had hoped to leave having an overwhelming feeling of excitement for the transplant and a sense of timing. I mean we are excited for the prospect of the transplant, but we have absolutely no idea when it'll happen. We thought for sure it would happen next year, but I guess we have to be sensible and realize that maybe it won't be next year.

Basically there are two big factors affecting the timing of Stephen's transplant right now; his size and finding a donor. According to the surgeon, Stephen's just not big enough yet. He's now up to 70.5 cm, which is awesome for a baby like him, but its just not long enough. They could probably get an adult kidney in (an adult kidney is the size of a fist), but they would have a lot of difficulty getting him closed back up. And we'd like for the kidney to fit as best as it can so it doesn't bulge out too much. But getting him to grow long isn't easy and there isn't any way of putting a time frame to that sort of thing.

The second issue is finding a kidney. We have always been under the impression that we could do a kidney swap. Where Bill or I would give a family one of our kidneys and they would give us one. But it turns out that the surgeons aren't really keen on that idea because the swap would be with another hospital, not CHOP, and they don't really like the logistics of that. So they've asked us to find him a living donor. If we aren't able to find a living donor, we'll have to use a deceased donor. Which would be ok, but not ideal. Deceased donor kidneys don't last as long and can also create some logistical issues for us since we live fairly far away from CHOP. So a living donor is the best. But how do you ever go about asking someone to put their life on hold and give our son one of their organs!?!? It just seems unimaginable to us. We could never ever forgive ourselves if something happened to that person or their other kidney! So I'm not really sure what we're going to do.

Either way, we're starting to work on getting Stephen listed on the United Network for Organ Sharing (UNOS) list; aka "the list." He'll go on the list on inactive status (status 7) until we've decided that we're not able to find a donor. Once he goes active, it's usually a couple of months for a suitable organ to become available since children get first priority on the list. But hopefully it won't come to that.

We also learned that there are still some questions that need to be answered about Stephen's liver function. We met with a GI doctor and her boss, the medical director, also came to talk with us. It looks like Stephen's liver function is still ok despite all the scar tissue, but they want us to come back for a special MRI that specifically looks at his liver and the bile ducts so they can get a better picture of what's going on. Thankfully she didn't see any need for a biopsy, so that's good news. What was also pretty cool to learn, is that she sees all if the kids with ARPKD and CHF (both diseases go hand and hand...ARPKD is the kidneys and CHF is the liver) and CHOP has a specific clinic once every three months for all the ARPKD kids. So we're hoping to go back and participate in the clinic next year. And possibly get Stephen into the intensive feeding clinic so we can stop speculating as to why he's not eating and start getting some definitive answers.

I could write so much more about our trip, the transplant process, and our stay at the Gift of Life House, but I think I'll save some of it for later. And I know I'll talk about it some more later, but in the off chance someone might be interested in learning more about being a living donor for Stephen, you can contact the renal transplant coordinator directly. I can answer some questions, but Joanne Palmer at CHOP is the best person to talk with and she's super nice. Her direct number is 215-590-6778 and her email address is Palmer@email.chop.edu.

Thanks everyone for your well wishes on our trip!

Wednesday, November 16, 2011

Checked In

We made it to Philadelphia this afternoon and are checked in and finally settling into the Gift of Life House. Stephen's "supposed" to be sleeping, but he must be excited about tomorrow too because he hasn't napped in two days and is now playing in the pack-n-play instead of sleeping. It should be an interesting night since he's never slept in one before. We thought we were actually going to have a big problem because I didn't realize how low to the ground he would sleep in a pack-n-play and the dialysis machine wouldn't work with him on the ground and the tubing running up over the sides. But thankfully I found a way to run the tubing through the bottom of it so it seems to be working fine. But the people here who run the Gift of Life House were so nice that they were actually going to go out and buy something for Stephen to sleep in if the pack-n-play didn't work!

The Gift of Life House is such a beautiful place and everything in it has been provided with donations. It has a gorgeous huge kitchen with a giant pantry and big refrigerators and freezers full of food and goodies that we have access to 24/7 and there seems to always be pastries and cookies and coffee available. Honestly, I would kill to have even a part of that kitchen! There are laundry facilities, a work out room, a meditation room, a play room, and even a small hair salon where volunteers come twice a month to give house guests free hair cuts. And like I said, everything is donated....even down to the no surcharge ATM (although no free cash...haha)! And each night a different restaurant or organization comes and either cooks or brings dinner for the house guests. Of course since it is communal living and not a hotel there are some house rules, but we're more than happy to follow any and all rules. And it seems like we might be one of only a few (3 or 4) families staying here. Who knows, we might just end up staying here long-term during Stephen's transplant while he's in the hospital.

Now I just need the little guy to fall asleep since we have a LONG day of appointments tomorrow!! Hopefully the next time I write I'll have some great news to share from Stephen's transplant team!!

Friday, November 11, 2011

Happy Veterans Day

First and most important we want to say a big thank you to all the veterans out there and those that are currently serving our country and keeping us all safe!! We greatly appreciate the sacrifices you and your family have made!

Because today was a holiday, Bill had the day off! I can't remember the last time he had a day off during the week, so we decided to take Stephen downtown to see the monuments and get some pictures. Unfortunately, because of the holiday, it was really busy and we couldn't find a parking spot anywhere close to the Mall...shocker! So we decided to head to the zoo instead! The National Zoo is free, which makes it a great place to take the little ones. Despite the chilly temps, we were able to see a bunch of animals and had a great time walking around (I think the chilly temps kept the crowds away). We saw the giant pandas, red pandas, lots of birds, cheetahs, zebras, gazelles, and elephants.

Here are some pics from our zoo adventure: