Tuesday, September 20, 2011

Finally caught a break..

The past week, since surgery, has been yet another rocky roller coaster. During surgery, the doctors had to remove Parker's first peritoneal dialysis catheter. This catheter was put in when we were at Ochsner, only a week after he was born. We had no problems with it before. It never leaked or anything, but it was right in the place that the surgeons would have to make the incision to remove the kidneys. So after the surgeons were done with the nephrectomy, they put another pd catheter in place. The problem was that the new pd cathether and his incision would have to heal; therefore, the pd catheter could not be used for a few days. So the doctors also put in a hemodialysis port during surgery. It felt like the were going to put holes all over my poor baby. :( I knew it was what was best for him, but at the same time, it's hard to accept.

Many of you may not know the difference between peritoneal dialysis and hemodialysis. I do not claim to be an expert, but I will try to explain it in the simplest of terms. After all, this is how it was explained to me too. Peritoneal dialysis is what is generally done on babies as small as Parker. The doctors pump diasylate into his abdomen, let it sit for a while, the diasylate collects toxins, and then they drain it out. These cycles continue (at this point) all day. When we come home, we will have him on a set schedule. He will be hooked up to the dialysis machine at night while he is sleeping and it generally takes 8-12 hours to complete. Hemodialysis is quite a bit different. Parker's hemodialysis port is in his neck. The port is used for a period of two hours. During this time the dialysis team removes a large volume of blood from Parker. The blood runs through a machine that will filter all of the toxins out of it. Once the blood is clean of toxins, the machine pumps it back into Parker. Parker is so small that they couldn't remove enough blood from him to prime the machine. (This is why we have had to use blood from the blood bank. This, plus the blood transfusions that he required after surgery.) Hemodialysis is typically too stressful for babies Parker's size. Hopefully, now that you know what it is, you can see why.  His dialysis team, however, is amazing! This was only the second baby this small that they have hemodialysized and they were successful with both. I, personally, think they deserve an award just for that and so do others. The team was asked to publish a study based on the first baby that they hemodialysized. They were told it was impossible and that it had not been done. Well our team made it possible, but they refused to publish the study. They said that the patients privacy was more important.

Friday--Two days after surgery, the surgeons told the dialysis team that they could try to start peritoneal dialysis (PD) again. Well, it was a little too soon. After about 3-4 cycles we noticed that there was a small amount of leakage coming from his incision. They stopped PD and told the nurses that they would continue on hemodialysis the following day. The nurses were given orders to stop Parker's blood pressure medicine, because hemodialysis makes his blood pressure drop. I mean think about it, they're removing a whole lot of blood. Makes sense, right?

Well, the following day, guess who got his blood pressure medicine? Apparently, there was a lack of communication somewhere. The day nurse gave him his medicine like usual. When the dialysis team began the hemo process his blood pressure started falling and the dialysis team immediately stopped. So now we have gone two days with no dialysis. Parker's kidney levels (BUN and creatinine) are holding just fine. Dialysis is not emergent at this time, but poor thing is so poofy!

Sunday, the hemodialysis went just as planned. He handled it like a trooper! Monday, however, Parker decided he had other plans. When the dialysis team tried hemo, his line was kinked. Nothing would flow out of it. So, they called us immediately and told us he would have to go back to surgery to replace his hemo port. We, of course, rushed to the hospital. When we got there, they had made a few changes to the plan. They were trying PD again, instead, to see if his incision and PD cath had healed. If we had complications with PD, then we would go to surgery to fix the hemo port. If PD went fine, then we would remove the hemo port. We are now 22 hours into PD and have had no complications. No leakage. The goal was to get 150 cc's of fluid removed by 2:00 p.m. today. When I spoke to his doctors at 8:30 this morning, they had ALREADY gotten 150 cc's removed and still had 6 hours left of treatment. The doctor said she would talk to the rest of the team and see about having his hemo port removed! This will be one less thing that he has holding him back.

So, Parker is back to himself and proving his point, just like his mommy and daddy! Oh, and by the way he is spoiled rotten already. It's not just us who says this either. The whole team has said it. It is his way or no way! He puts them in their place quick! We will definitely have our hands full, but we can't wait! :)


  1. Rachael Crisler: I'm so glad Parker is holding his own! I'm also glad you created this page to tell his story. Writing can be very therapeutic for you and it's an interesting read at that! I've posted prayer requests on my FB wall so that my peeps back home will pray for him. Of course, i included Parker's picture (the one with his open shining eyes staring up at you.) People I don't even know comment on that picture and pledge their prayers. It's his eyes. You can see his spirit through those eyes! Now I think half the state of Arkansas is praying and pulling for him! And we will keep praying! It has been uplifting for everybody to follow Parker as he overcomes so many obstacles, one by one--one day at a time. It has gotten me back into a much needed habit of praying. God bless you.

  2. The nurses spoil the babies too. When Cadie got out of PICU and into a regular room her hours were flipped because nurses were rocking and talking to her all night.

  3. I agree with Cindy - the nurse's my little kids had LOVED THEM. They rocked them, talked to them, etc. We still see them today and my oldest recognizes them and gets the biggest smile on his face. Stay strong, Parker. You have lots of people rooting for you!!

  4. Kristin and Jason - I am so glad to hear that Parker is doing great, what a fighter! Thank you so much for writing such a wonderful blog. This blog is like reading my own life story. Our son, Nolan, was born on August 11 and diagnosed with ARPKD. They first discovered it during our routine 20 week ultrasound. It was devastating as we were told termination was a good option as our child would not make it. My husband and I were determined to fight for our child and named him Nolan as this means fighter. We both had a genetic test done for ARPKD gene and have been found not to be carriers (1-4% error rate). So what does our son have??? Who knows, still ARPKD but just not the classic ARPKD gene they think. They however don't know if this will help his disease or hurt it in the future.

    He was born by C-section at 39 weeks, the AF dropped from a stable 13 to 3 in a few days. He was born a healthy 7 pounds, he breathed and was rushed to the NICU. We were fortunate that he was able to maintain his fluid levels and his kidneys remained slightly large. They are around 6 cm but extremely infested with micro and macro cysts and with some tubule dilation which suggests the kidneys will decease in function sooner. He was born with a creatine level of 2.0 but in the last 6 weeks has had that value drop to .82, however this is now at a plateau. His blood pressure while in NICU was average of 50-60, but he hasn't had his pressures taken in a month. He cannot maintaining his potassium level and is on keyexalate? to keep this level normal. He is on PM 60/40 formula to help keep his electrolytes in balance. As of earlier this week his calcium is now elevated as well as his platelets (alarming but not a normal sign of kidney disease) and his hemoglobin is low. He is now on iron supplements and hopefully that value can rebound.

    Our son is now 6 weeks old and living at home. We are currently looking for a second opinion from another doctor, possibly Children's in Milwaukee. We are currently at Mayo, but our nephrologist while good, has never seen an ARPKD child. It is so hard to not know the future of our children or to know when they will hit end stage kidney failure. We were told we are estimated to be a high stage 3 or low grade stage 4 kidney failure out of 5.

    IF you would like to talk please feel free to email me egmerten@gmail.com. It was so nice to see from your blog that our doctors are on the same page.