Author: E.A. Menon

EmyG is very sick. She has declined significantly since this weekend.

They think she has an infection, but they don’t know where.

She has had two strokes, and a bleed, likely because of the infection.

The doctors are concerned that she will not survive.

Please pray for her life.

EmyG is now out of surgery. She is intubated and will remain so for at least a day or two. She will also remain sedated.

The surgeon found a perforation in her bowel, and the surrounding area was necrotic. She had 5cm of intestine removed and sutured back together. As a result of the perforation, the contents of her bowel had leaked into her abdomen. This contaminated her peritoneal dialysis catheter, so it had to be removed.

This changes a lot for EmyG. She will have to be on a type of hemodialysis called continual renal replacement therapy (CRRT). She has had this in the past, so we are confident she will be fine on it. Unfortunately, she will need to be on CRRT for at least 6 weeks before they can put another peritoneal dialysis catheter in. She will also not be able to take feeds for at least 6 weeks while her bowels heal. After those 6 weeks, they can put a new peritoneal dialysis catheter in. Two weeks after that, she can go back on peritoneal dialysis.

This has been a major setback. This does not change her prognosis, rather it makes the path to a kidney more winding and convoluted. But she will get there. God is good.

EmyG had an X-ray this morning and it showed quite a bit of free air. The team is quite concerned. It appears as though EmyG has a perforated bowel. She needs emergent surgery to explore/fix the perforation/find out why she has so much free air.

Please pray over this entire situation. She needs wise surgeons, healing, resilience for the future.

Emy is doing better than she was on Thursday, but not nearly as well as she could be. She seems to be at a tipping point. If things go well (her blood pressures improve, respiratory status stabilized, her affect returns to normal, her white blood cell count in the peritoneal dialysis fluid drops, and her other infection markers continue to improve), she will be in a great place. If things don’t go well (the opposite of the above listed situation), there is a possibility she may have a poor prognosis.

God is sovereign. He shaped and formed her in Rebekah’s womb. He is sovereign over the infection, all the way down to the individual pathogens. We acknowledge this and praise Him for this. And this fact is the only reason Rebekah and I can be strong. We have faith in her treatment, her team, her condition, THROUGH Christ. Not in addition to, not in despite of, but BECAUSE of Christ.

We ask for prayers over her healing in this season of illness. There is so much going on that it is difficult to pin down any particular prayer. So please pray for her to come through this and into a thriving and growing/developing state of health.

EmyG has been doing well. She’s had some issues with pain management due to dialysis removing the medication in the process of cleaning her blood.

She has also been running into complications with her blood clotting the circuits of the hemodialysis machine. To address this, they started her on an anticoagulant. Unfortunately, this caused her to begin bleeding from her surgical sites. As a result, they removed the heparin from her IV. This then caused the circuit to clot again.

It was decided earlier in the evening to put a PICC line in so they could use a different anticoagulant that wouldn’t cause bleeding issues. This is a line that sits in her heart to deliver medications.

We were also told late in the evening that EmyG will be moving to the PICU around noon tomorrow. It will be easier for the team to manage her hemodialysis while she is on the PICU. EmyG, Rebekah and I are going to miss her NICU primary nurses and team for the next 10 or so days!

Please pray for healing of her surgical sites, no infections, improved hemodialysis, and improved growth.

EmyG is doing well. Her hybrid of hemodialysis and peritoneal dialysis is pulling off good amounts of fluid.

Unfortunately, it is difficult to manage her pain because many drugs require kidneys to be cleared from the body via urine. This limits the number of pain meds she may be able to use. Even when she can receive a dose, the effects can be longer lasting than normal.

We got word tonight that EmyG will be going in for her expected surgery to replace her peritoneal dialysis catheter. This is not a surprise for us. We knew she would be going in for another surgery within the month.

We ask for prayer for the surgery to go well. For no complications. And for good pain management.

With this surgery successfully completed, we will be a few months away from bringing her home!

EmyG is doing well! She is becoming much more interactive and is developing more of her personality. I think she may be a bit mischievous. I can see her peep an eye open, see me, and then slam it shut, all with a little smile on her face.

She has an interesting Gad pattern moving through her bowels that is of a bit of concern to the providers. They are going to keep an eye on it to rule out infection.

Her antibiotic regimen to clear her peritonitis is coming to an end this Monday. A culture will be collected on her peritoneal dialysis fluid to make sure nothing grows over the weekend. Her white blood cell count has been steady and below the concerning threshold. If she has a return of this infection, she will need to have her catheter replaced. This is will be a big setback.

Please pray for her infection to be cleared, and that she does not have an infection in her GI tract. Please pray God keeps this catheter for her.

12.29.2020 Update – infection

EmyG has been doing very well the last week or so. Her blood pressure stabilized and her belly has returned to normal color. They have been able to increase her dialysis fill volumes and she has been pulling moderate to good levels. Rebekah and I have both been able to hold her, and the moments have been precious and sweet. She enjoyed her first Christmas with us in matching pajamas, and great presents from all of her family and friends.

Last night she had a high level of white blood cells in her peritoneal dialysis fluid. As a precaution they started her on a couple antibiotics in her dialysate. This morning the nephrologist informed us that she indeed does have peritonitis. This is not the most ideal situation. Peritonitis is an infection of the peritoneum, where the dialysate sits and pulls out the toxins from her blood. Because she has it, her dialysis is not going to be working as effectively. They are going to continue on with adding antibiotics to her bag and hoping that we will see an improvement in her dialysis in the next 24 hours.

For those of you who have been praying for her, please pray that her infection is healed quickly. Also please pray that her dialysis effectiveness improves.

Earlier this afternoon Emy’s blood pressure plummeted. Her belly has begun to turn blue as well. There are a number of things going well, and a number of things working against her. Managing her blood pressure has been challenging for the care team. Currently she is maxed out on blood pressure medication.

The dialysis appears to be working, which is good. However she is retaining fluid.

Please pray these issues get resolved. Pray she does not code. Pray her blood pressure resolves, and her dialysis functions to the best possible degree. Pray for good blood flow throughout her entire body. That God be glorified in her healing.

EmyG is doing well. The physicians are still trying to find a good balance of medications and other methods to keep her blood pressure up. The concern with low blood pressure is possible damage to organs and difficulty with dialysis if it continues.

Her dialysis is slowly working. Her electrolytes are in a good range. She is, however, retaining slightly more than what is being put in. The concern for this is too much fluid in her belly, which can strain her incisions.

Rebekah is still recovering from the surgery. Her abdomen is somewhat painful at times.

Prayer requests. Health and healing for Rebekah. Stable and healthy blood pressure for EmyG. For dialysis to improve and continue without complications. Life for EmyG.