Emy G is scheduled for surgery tomorrow, March 17th, to remove the scar tissue from her catheter. After this surgery, her catheter should work properly. Please pray that the surgery goes well and that she heals quickly. Please pray that the PD catheter functions as it should so she can transition back to using peritoneal dialysis instead of CRRT.
Emy was very alert and engaging today. It’s been refreshing the last few days to see her so content.
A dye imaging study revealed that there is a blockage in her catheter. The surgeon she has had for her prior surgeries is on vacation, so we don’t know exactly what the plan is as far as her catheter is concerned. Thankfully, CRRT is going well so there is no rush to get the PD catheter fixed. The nephrologist said that she will likely need a minor laparoscopic surgery to unclog the catheter. She will likely be able to use the PD catheter a few days after surgery.
Overall, Emy G is doing well. She was taken off of antibiotics yesterday and is still doing well. She was weaned a bit off her high flow respiratory support from 4 L to 3 L. She will work on her oral skills tomorrow, with the goal of learning to eat by mouth at some point. Emy says, “I’m going to make progress, snow or shine, block or no block in my catheter!”
We were given the OK to hold Emy again on Thursday. Unfortunately, while she is on CRRT, she can’t be held. I was able to hold her on Thursday before they put her back on CRRT. It was a sweet moment. CRRT is a continuous circuit, so I’m not sure when I’ll be able to hold her again.
Thank you for your continued prayers! She’s a strong little love.
Today marks two weeks since Emy’s PD catheter surgery. This means it is healed enough to transition back to PD instead of CRRT. They stopped CRRT this morning and attempted to use her PD catheter. Unfortunately, fluid did not drain, so there is a block somewhere in the system. Please pray that the block resolves and her PD goes smoothly.
We are thankful that she seems to be doing well on antibiotics. Please continue to pray for her to heal from the infection. Additionally, the hematologist finished the tests Emy needed and thankfully they all came back normal. She does not have a blood disorder.
Due to her surgeries, she has not been able to be held the last two weeks and she has been given suboptimal nutrition. Please continue to pray for her comfort and development. She has been through a lot in her 3 months with us. We are so thankful for her resilience and tenacity. God is with us.
The last few days have been up and down for EmyG. She has had low platelets, low blood pressure, elevated CRP, and elevated WBCs. She was not responding to vasopressors or bolus fluid. The doctors could not find a source of infection, but with that clinical picture, they decided to treat her with antibiotics. Now that she has antibiotics in her system, her blood pressures have become more stable. Please pray that her infection resolves.
The doctors are not sure why her platelets continue to be low. The hematologist is currently investigating this issue. Additionally, she has some immature white blood cells in her blood which shouldn’t be there. Please pray that the doctors are able to find clarity regarding her blood issues.
This morning, the CRRT machine shut down again. This caused Emy’s blood pressure to drop. Please pray that Emy’s blood pressure returns to normal. Please continue to pray for the doctors, nurses, and other health professionals who are taking care of her, that they are vigilant, caring, thoughtful, discerning, and loving.
Emy received her third surgery on Thursday. This time, they successfully removed her old catheter and replaced it with a new one on the same side— right upper chest. The surgeon was able to put a cuff under the muscle, which will secure it better than her other catheter. We are hopeful that this is her “forever” catheter until she is big enough for a kidney transplant in a few years.
While they wait for her PD catheter to heal, she is on continuous renal replacement therapy (CRRT), which is basically a slower, gentler form of hemodialysis. She will be on CRRT for about 2 weeks then she will transition back to PD.
Please pray for healing. Pray that her PD catheter doesn’t leak when she uses it in a few weeks and pray that it doesn’t get an infection. Please pray that she doesn’t have complications with CRRT. Please pray that she heals from her surgery and that God gives her comfort instead of pain. She has had a rough couple of weeks since her second surgery in terms of her pain, so please pray for that to be managed while also not sedating her too much.
We are hopeful that she can come home in 2-3 months. We are also aware that God has a perfect timeline for Emy, which may not align with our expectations. God has kept her many times over and we are so thankful for how far she has come.
Hello! Emy G has tolerated the HD well from a medical perspective. She is getting a lot of fluid off over 4-5 hours each day. Now she is battling high blood pressure. It is more difficult to balance blood pressure on HD than PD because HD takes off a set amount of fluid in a few hours, whereas PD takes off whatever she has to give throughout the day and night. The fluid balance is more difficult to manage with HD, so she is currently restricted on her fluids to make sure she doesn’t get too fluid overloaded.
To help draw off extra fluid when she isn’t on HD, the team decided to also have her on PD again at a low fill volume (10 mL). Hopefully, this will help manage her blood pressure while being at a low enough fill volume to avoid leaking. Please pray that her blood pressure and fluid levels are managed with this combination. Also pray for her comfort during HD— yesterday and today she was very irritable while she received HD. It was difficult for me as her mother to see her in such discomfort without being able to console her. Please also pray that the team is able to increase her nutrition as she gets more fluid off, so that she has what she needs to grow big and strong. She is currently about 2.7 kg, with some of that being extra fluid weight. Emy G is a strong little lady and we love her to pieces. Thank you for your continued support along this journey.
There were some changes in the surgical plans since the last post. Yesterday, she received surgery to place a hemodialysis (HD) catheter and a gastrostomy tube (G-tube). The plan is to use HD for a few weeks to let her get bigger and to heal from this surgery, then she will get a second surgery to replace her peritoneal dialysis catheter.
She missed the window of learning how to eat orally as a reflex, so it will take her a lot longer to learn that skill. The team thought it best to get a G-tube placed so she can get her nutrition directly into her stomach. It is more comfortable for her than her current feeding tube, which goes through her nose down her esophagus.
Hemodialysis is different than peritoneal dialysis. With HD, her blood is taken out with a machine, filtered, then put back in. With PD, a solution is cycled into and out of her peritoneal cavity every 30 minutes to draw out extra fluid and toxins.
With HD, there is a risk of clotting and infection. Please pray that Emy doesn’t have any complications with the HD. It will be a bit of a rocky road for the next few weeks while she is on HD.
Emy’s catheter leaked every day last week and sometimes multiple times per day. We had a care conference for her on Thursday and it was decided that the best course of action is to have a different catheter placed. She is going to have surgery this week. This is a setback for her, but the nephrologist also said if Emy recovers well from the surgery, she should be able to be discharged in 2-3 months! This is the first time we’ve heard a tentative timeline for discharge. It’s a bit of a relief to see an end goal for our NICU stay.
Please pray that her catheter surgery goes well. They are doing a very similar placement, but tunneling the catheter through the left side of her chest instead of the right side. The surgeon is hopeful that Emy is big enough now to have it placed under the muscle instead of under the skin, so it is more secure. It will also have a cuff to help secure it in place. This catheter is meant to be permanent until she gets a kidney transplant in 2-3 years. Please pray that it endures and doesn’t leak. Please pray for Emy— that she doesn’t have any more infections and that she heals appropriately after surgery and that she avoids complications from the surgery.
While Emy heals from surgery, she will be on hemodialysis. Please pray that she is stable during this transition time and that her blood pressure is manageable. The last time she had surgery her blood pressure was very low. The doctors think she will tolerate the surgery much better now than she did at birth because she has gained a lot of weight. She’s about 2.5 kg (5.5 lbs) now! She was 1.1 kg (2.4 lbs) at birth. Thank you for continuing to keep her in your prayers.
Hello— Emy’s catheter is leaking again. The nephrologist decreased her fill volume from 18 mL to 14 mL to try and reduce the risk of persistent leaking. Please pray that the leaking resolves. They consulted with surgery because she may need to get her catheter replaced soon. Please pray that the surgeon has insight on how to handle this situation.
Emy is doing well, all things considered. Please continue to pray that her infection resolves, that she doesn’t leak from her catheter, and that she grows more each day. Also, please pray that her catheter doesn’t need to be surgically replaced any time soon.
She is starting to smile more frequently which is a lot of fun. She loves warm blankets, sucking on her pacifier and being held. Her hair is growing long in the back— a little mullet. Below are some pictures from the last few days. Thank you for following along with us as we navigate Emy’s health journey.
Baby Menon 