We were missing in action last week because Bill and I actually snuck away for a few days (didn't want to share this news with everyone and jinx ourselves) to enjoy some sun and sand in Ft. Lauderdale. Bill received the Leader's Club award from Wells Fargo and the sales conference was in FL so we took the opportunity to get away for a few days. It was wonderful being away and I was truly able to relax and forget about things for a bit, but life certainly hit us like a freight train the minute we returned!! I shall explain.
The day we left, Stephen's vancomyacin taper ended and he began a two week stint on a new antibiotic that would hopefully kick the cdiff out once and for all. But Sunday afternoon as we were picking Stephen up from Bill's parent's house, his diarrhea returned with a vengeance. A very bad sign that the cdiff was no where near running it's course. Then Monday morning as I was cleaning Stephen up from blowing out his diaper in bed overnight and tending to his super raw tushy, fluid started squirting out of a hole in his PD catheter! It was just unbelievable!! It's like we were being punished for enjoying a few days of vacation! I just couldn't believe what was happening!
Thankfully after spending three hours at the nephrologist's office taking blood work, PD cultures and fixing his catheter, they were able to repair the catheter without having to go to surgery to replace it. The hole was very close to his transfer set, so the dialysis nurse was able to cut it off just above the hole and put on a new transfer set. This actually isn't the first time this has happened and you'd think that the catheter manufacturer could make the tubing a bit more durable to prevent this from happening. There's basically a pressure point at this one particular place unless you let your catheter dangle straight down all day long. And that's a big no-no, so you have to coil up and around your body in some way. But anyway...they gave Stephen a loading dose a two antibiotics (just what he needed while already having diarrhea and battling cdiff) and sent us on our way.
Later that day I spoke with his infectious disease doctor who shared the same fears as I did and asked that I take a stool culture the next morning to they lab to see if he was in fact still positive for cdiff. So thats what we did and in the meantime, I've been bleaching every piece of clothing, blanket, and sheet in sight. And pouting. It's been a real kick in the pants to say the least and I was completely convinced that his transplant would be postponed indefinitely to the point of not thinking it would happen at all this year. I felt totally and utterly defeated Monday night.
But I am so glad I didn't announce that on the blog, because his culture came back negative for cdiff this morning!!! Amazing, fabulous, stupendous news! And the doctors actually don't think that this is a false negative this time (we've had those over the past 5 months) because they ran a very sophisticated test. So we actually got great news first this morning.
But then of course with the good news came the bad news; as always. Stephen's blood work should a very significant drop in his white blood cell count. So much so that the on call doctor received a page from the lab. The nephrologist believes that this may be a sign that Stephen's liver and spleen aren't functioning properly to the point where blood isn't flowing from the liver to the spleen properly causing the spleen to become very enlarged (which we already knew was the case) resulting in portal hypertension. We knew this was always a possibility, but up until now, all the tests have shown that Stephen's liver is functioning just fine; that it was just enlarged. But now they're (and we're) not so sure. There are ways to fix this including placing a shunt in the liver via Stephen's neck and possibly a liver transplant, but we're going to have to go see some more specialists (yippee) to figure this out before transplant.
And of course as we're pulling into our neighborhood from the nephrologist's office today, I get a call from the dialysis nurse, that the preliminary results of Stephen's PD fluid culture came back with a growth of gram positive cocci. In layman's terms that means he's got some type of bacteria growing in his PD fluid from the hole we found. Just fabulous!! But the nephrologist thinks it could be a false positive because his white blood cell count in the fluid was normal. So for tonight, no antibiotics at home and then back again tomorrow for another culture and a loading dose of antibiotics. It looks like we just might be at nephrology every day this week!
And let's not forget about our follow-up appointment with immunology tomorrow and cardiology for an ECHO on Friday.
So in essence (I apologize for the boring details), today was not unlike most days; BIG highs and SUPER low lows. One big gigantic roller coaster ride. Gotta just focus on that negative cdiff culture results, because otherwise, I just might lose my marbles this week! Or maybe just hitch a flight back to sunny Florida :)
The day we left, Stephen's vancomyacin taper ended and he began a two week stint on a new antibiotic that would hopefully kick the cdiff out once and for all. But Sunday afternoon as we were picking Stephen up from Bill's parent's house, his diarrhea returned with a vengeance. A very bad sign that the cdiff was no where near running it's course. Then Monday morning as I was cleaning Stephen up from blowing out his diaper in bed overnight and tending to his super raw tushy, fluid started squirting out of a hole in his PD catheter! It was just unbelievable!! It's like we were being punished for enjoying a few days of vacation! I just couldn't believe what was happening!
Thankfully after spending three hours at the nephrologist's office taking blood work, PD cultures and fixing his catheter, they were able to repair the catheter without having to go to surgery to replace it. The hole was very close to his transfer set, so the dialysis nurse was able to cut it off just above the hole and put on a new transfer set. This actually isn't the first time this has happened and you'd think that the catheter manufacturer could make the tubing a bit more durable to prevent this from happening. There's basically a pressure point at this one particular place unless you let your catheter dangle straight down all day long. And that's a big no-no, so you have to coil up and around your body in some way. But anyway...they gave Stephen a loading dose a two antibiotics (just what he needed while already having diarrhea and battling cdiff) and sent us on our way.
Later that day I spoke with his infectious disease doctor who shared the same fears as I did and asked that I take a stool culture the next morning to they lab to see if he was in fact still positive for cdiff. So thats what we did and in the meantime, I've been bleaching every piece of clothing, blanket, and sheet in sight. And pouting. It's been a real kick in the pants to say the least and I was completely convinced that his transplant would be postponed indefinitely to the point of not thinking it would happen at all this year. I felt totally and utterly defeated Monday night.
But I am so glad I didn't announce that on the blog, because his culture came back negative for cdiff this morning!!! Amazing, fabulous, stupendous news! And the doctors actually don't think that this is a false negative this time (we've had those over the past 5 months) because they ran a very sophisticated test. So we actually got great news first this morning.
But then of course with the good news came the bad news; as always. Stephen's blood work should a very significant drop in his white blood cell count. So much so that the on call doctor received a page from the lab. The nephrologist believes that this may be a sign that Stephen's liver and spleen aren't functioning properly to the point where blood isn't flowing from the liver to the spleen properly causing the spleen to become very enlarged (which we already knew was the case) resulting in portal hypertension. We knew this was always a possibility, but up until now, all the tests have shown that Stephen's liver is functioning just fine; that it was just enlarged. But now they're (and we're) not so sure. There are ways to fix this including placing a shunt in the liver via Stephen's neck and possibly a liver transplant, but we're going to have to go see some more specialists (yippee) to figure this out before transplant.
And of course as we're pulling into our neighborhood from the nephrologist's office today, I get a call from the dialysis nurse, that the preliminary results of Stephen's PD fluid culture came back with a growth of gram positive cocci. In layman's terms that means he's got some type of bacteria growing in his PD fluid from the hole we found. Just fabulous!! But the nephrologist thinks it could be a false positive because his white blood cell count in the fluid was normal. So for tonight, no antibiotics at home and then back again tomorrow for another culture and a loading dose of antibiotics. It looks like we just might be at nephrology every day this week!
And let's not forget about our follow-up appointment with immunology tomorrow and cardiology for an ECHO on Friday.
So in essence (I apologize for the boring details), today was not unlike most days; BIG highs and SUPER low lows. One big gigantic roller coaster ride. Gotta just focus on that negative cdiff culture results, because otherwise, I just might lose my marbles this week! Or maybe just hitch a flight back to sunny Florida :)
Sending you a great big hug!
ReplyDeleteLove, Charlene
Lindsay - positive thoughtsand prayers for you all. It seems like such a ride and not such a good ride at times. I, too, am awaiting a transplant after my first one failed and was a pd patient until an infection and my new pd cathedar leaked. Now that one is blocked and I remain on hemo dialysis through a neck cathedar. Ugly any way you look at it but it keeps me alive. I also have had a great life and raised a wonderful family. For that I will always be grateful I pray for Stephen and your entire family every day, as Charlene keeps me in your loop. It is not an easy journey but try to stay focused on the little good things that you experience. I know that sounds like such a hollow advice when each and everyday finds a new challenge. Blessings will abound I am sure, just try to hang tough and know that there is a world cheering you on and praying for you all. You so deserve that break - you are a fantastic mom and never forget that. I know how hard this is.I pray that our prayers will bring to you all the strength and peace that you need to sustain you and yours. Know that even though we don't know each other, our stories are similar and I will continue to pray as are many other peple that you will never know. The best to you all. Kathie Hanacik
ReplyDeleteHi Lindsey,
ReplyDeleteSorry to hear all of the bad news but happy that there are bright spots. Keep focused on the positive and we will all be keeping Stephen in our prayers. He is a fighter and I know, with God's blessings, he won't let us down.
Love and Hugs,
Aunt LuAnn and Uncle Dick
Ugh what a week you all have had! Keep your head up and know that Stephen is in our prayers :)
ReplyDelete-The Masons
Hang in there! He is a tough little guy!
ReplyDeleteIn our prayers....
Sue