A brief explanation on how peritoneal dialysis works. There is a machine that hooks to a bag (looks like a very, very large IV fluid bag) and another tube that connects to a bag we put in the floor for her "drain bag" and another tube that is hooked to Maci's catheter that is in her peritoneal cavity (her belly but not her stomach).
The machine goes through multiple cycles (12) where it fills the belly with the fluid from the big "IV fluid bag". The fluid sits for about 28 minutes and during this time it is "cleaning" - pulling the bad stuff from Maci's body that her kidneys aren't able to do. After approximately 28 minutes the machine drains the fluid from her belly into the drain bag. After the drain is over for that cycle the machine will fill her belly up again for the fluid to sit and clean for the approximate 28 minutes again. The fill, fluid sitting (called dwelling) and then draining is a cycle. She goes through 12 cycles. The amount of fluid that goes in is 250 mL. The machine has to get 80% of that back or it will beep "low drain volume". The goal is to get back all 250 mL.
Since beginning dialysis again after the loss of Maci's transplanted kidney, we have noticed a lot more fibrin in her drain bag. Fibrin is an essential protein in the human body that is produced during inflammation. The body utilizes fibrin as a blood clotting protein, containing blood loss and keeping infection away. In most cases, fibrin is good. However, fibrin can also "clog" up a dialysis catheter. When we start to see more fibrin in the drain bag we put medication in the dialysis fluid to help break it up (heparin) and help it pass through.
Tuesday 11/25 Maci's dialysis machine beeped on her last drain. It was not wanting to give back the 80% it put in. Wednesday night the machine started alarming (beeping) on the first cycle. It never would progress and we had to shut the machine off. Thursday I called her doctor and they wanted to try dialysis again Thursday night and if it didn't work I had to bring her in. Even using the heparin we noticed chunks of fibrin.
I took Maci to LeBonheur on Friday and we have been here since. After an unsuccessful attempt to get the catheter working that day, they decided to do surgery, a laparoscopic procedure with a camera to see what might be causing the problem. A good bit of fibrin was removed and some scar tissue was removed too (likely from her kidney transplant and later removal of the transplanted kidney). The surgeon wanted her belly to rest a couple of days and we tried dialysis for the first time Wednesday night. It didn't work. Maci went back to the OR today for the catheter to be replaced. Her current catheter just "cleaned" of fibrin on Monday (4 days ago) had more fibrin. She also had inflammation and a possible infection. The surgeon decided to remove the non working catheter and wait on putting the new one in. You can treat the infection with antibiotics with the catheter in BUT if there is infection inside the catheter and we are not able to do dialysis, for the antibiotics to get inside the catheter, the infection could sit there inside the cath. The infection on the outside could clear up but you still have the risk of the infection inside the cath so he pulled it out. I am in full support of his decision to do that. This way, as he explained, we can treat the infection, let her belly heal and then put in a new catheter later. This way the risk of "wasting" the new cath and area where it is implanted is decreased. Ideally, he wants to replace the catheter in 6 weeks, preferably no sooner than 4 weeks.
How can Maci go without dialysis? Maci makes urine. Many kids in renal (kidney) failure do not or make very little. Since Maci makes a good bit of urine this helps with her body getting rid of fluid and keeps her labs stable. Her lab work has been pretty much the same since she was admitted. This is a good thing. For her docs, she is too small for hemodialysis (blood is removed by a big machine, the machine cleans the blood and returns it to the body). Since she is so small, they say it would be very rough on her body. If we were to get into a crisis situation with her, there is something that can be done called CRRT, Continuous Replacement Renal Therapy. "CRRT provides slow and balanced fluid removal that even unstable patients - those with shock or severe fluid overload - can more easily tolerate. Both average and smaller size patients can undergo CRRT therapy and it can be adapted quickly to meet changing needs."
(http://www.baxter.com/healthcare_professionals/therapies/renal/acute_kidney_treatment/continuous_renal_replacement_therapy.html)
They were prepared to do this last year when Maci had to have her transplanted kidney removed in case she needed her blood cleaned in an emergency.
As long as Maci's labs remain stable, the plan is to let her heal from the two trips to the OR this week. My hope, my prayer and my plea is that she continues to do well without any drastic changes in her lab values.
My kid is a super T-R-O-O-P-E-R! She has not needed any pain medicine after either surgery and for the most part has been happy as can be afterward. Once the anesthesia begins wearing off she gets cranky but it's not long lasting (just a few hours). I am SO proud of her. She is such a joy and considering that she has to pretty much lie in bed the entire hospital stay she has been laughing and smiling.
For Children's of AL the weight goal is 12 kg / 26.5 lbs to be listed as active. Tuesday she was 12.18 kg. Saturday she was 12.34 kg and tonight,12.4. She is not swollen or puffy so it does not appear to be fluid weight either. YAY! I will talk to the kidney doc on service Monday about how to go about updating COA on her weight.
I also just learned that we will be here for at least another week. **long sigh** The antibiotic that Maci is on is a higher dose (of Vancomycin) and is given IV. She will also have to have lab work done to check the antibotic level to make sure it's not too much or too little. SO, for that reason she stays put.
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