Need Help

To Anyone

mine and my wifes baby boy just came home on Dialysis and is using the Freedom Cycler and we need some help. What the issue is that he does not seem to drain as much as he did when he was in the hospital, he fills with 100ml and when he was in the hospital he would drain anywhere from 120 to 150 and now that we have him home on his first drain he just drains between 40 and 60 and we are lucky if he drains 110 to 120 during the night.We need any help regarding this issue.

Maybe he is dehydrated? How much fluid does he drink? Did they give him IV fluids in the hospital? What strength of dialysate is he using at home as compared to in the hospital?

All he gets is his baby formula and that is just 50 to 60cc’s every three ours or so, he has not been on IV fluids in some time, the strength of his dialysate is 1.5 which is the same as he was on in the hospital.

Buller, your first resource is your son’s PD nurse. You should have a 24-hour phone number to call for questions–please use it. Your son is very tiny, and maintaining fluid balance is very important.

We will try to see if we can find a pediatric PD nurse, but your son should already have one who can help you.

I consulted with an experienced pediatric dialysis nurse who suggested that I post this to you.

There are several factors that could account for the poor drains.
– Your baby could be reabsorbing the fluid-especially if there are long dwell cycles requiring a change in his prescription;
– Your child could be constipated requiring a change in medication to keep his bowels moving normally;
– Your baby’s catheter may have flipped upward so the end is not low in the abdomen making it impossible to remove even the fluid that has been drained in, much less the extra fluid that the dialysate should be pulling off.

She said the most important thing is that you need to report this to your child’s dialysis center ASAP and keep in daily contact with the home training nurse. Watch his weight very closely and report this to the nurse. If your child is a baby it could be very dangerous if he is getting fluid overloaded. The dialysis staff should reevaluate the situation right away.

please, if you have not already, let your baby’s dialysis nurse and nephrologist (kidney specialist) know what is going on with the low drain volumes. perhaps the baby’s catheter isn’t positioned correctly. this would have to be determined by a professional. the pd nurse and nephrologist will be happy to help you!

Drinks about 60 ccs of neosure every feeding, and when he is on the machine it is alittle less. the strength of the dialysate is 1.5. We have called the on call nurse every time it happens but they have also stated it might just be because he is dehydrated. He has been on keflex for about a week now and it has been causing diarrhea. This was not happening when he was in the hospital so we are concerned it could be the machine but we are told that it is not likely.

We have contacted the nurse, many times and also have been to the clinic yesterday for weight, bp and bloodwork. They all know what is going on. They also flushed my baby’s pd catheter and they said it flushed fine. So it could be dehydration, we will know more by the bloodwork. It only happens the first drain cycle, so we were concerned it was the machine.

To everyone who replied, thank you for your suggestions. It turns out we were not priming the drain tube. We were told by one nurse that it was not necessary, so we didn’t do it. I figured it out one night while watching the first cycle drain. I noticed the tube was being filled by my son’s drainage, and thought to myself what if the drain tube is holding what he put out, therefore giving us a lower uf for that cycle because it does not all make it to the bag. Sure enough primed the drainage tube the next night, and behold he drained perfectly after that. I told everyone at the kidney clinic, and they stated that it made sence that his drainage was stuck in the tubing. It was one of those “Duh” moments.

Buller, I am so glad that you were able to sort this out for your son! I hope all goes well with his PD.