Author: rebekahcarrizales

Hello all! It has been awhile since my last update. As the title of this post alludes, Emy has had a fairly stable couple of weeks. She had some blood pressure drops and needed to be on vasopressin and norepinephrine for a short time, which consequently stopped her breast milk feeds.

She made progress this week and is now off of her blood pressure medicine and off of her antibiotics. Her last dose of antibiotics was early in the morning on 4/15; so far she hasn’t shown any signs of a re-emerging infection. This is a big accomplishment for Emy since she has been on antibiotics for a long time.

They also re-started her feeds again a couple of days ago and she is tolerating them, which is also a big accomplishment. Her bowel perforation set her back and she hasn’t tolerated enteric feeds very well since her surgery. We’re hopeful that she will continue to tolerate the increase in feeds as that will help her grow in length (she is a bit chunky right now but hasn’t grown much linearly).

Yesterday and the day before, Emy gave us some beautiful smiles and was very interested in looking at her reflection in a mirror. While she is stable, we are making use of her wakeful times by engaging her senses. She has limited mobility while she is on CRRT, but we offer her activities she can tolerate. We give her different textures to hold and show her the books we read. She has also enjoyed staring at the rainbow light in her room (it is a setting on her overhead lights). We love interacting with her and are relieved to see her in a stable place.

Thank you for your continued prayers for Emy. Please pray that God continues to sustain her: that she grows in length, that she stays infection-free and that she continues to heal from her last bought of peritonitis/bowel perforation. Please pray for her to have no complications with the next PD catheter surgery, which will likely happen within the next month. Also please pray that we are able to work out the logistics of her discharge when the time comes.

Emy is healing from her bowel perforation surgery and showing signs of progress. Last week through Sunday, she was on varying doses of vasopressin, epinephrine, and norepinephrine to maintain her blood pressure. It was hard to say why she was hypotensive for so long. On Sunday evening, her CRRT circuit went down and they didn’t restart it until Monday morning. That was not ideal but it also meant that I was able to hold her Sunday evening and Monday morning!

When I held her I gave her kisses on her plump cheeks. She tracked my face and moved her face so she could see me as I bent down closer to her. After the kiss, she shook her head a bit in surprise. It was so pleasant interacting with her in my arms. She studied my face so intensely. Additionally, she gave me a few smiles on Sunday and Monday, which she hasn’t done since the day of her bowel perforation surgery. In total, she gave me 3-4 intentional/awake smiles and 3-4 smirks/sleepy smiles.

When her CRRT machine turned on, so did her voice. I came to realize that the cause of a lot of her fussiness/irritation is likely due to the CRRT machine. It was heartbreaking to see her go from being so peaceful to inconsolable in a matter of seconds. My hope is that she will eventually get used to it and it won’t bother her as much, otherwise this will be a difficult month for her from a pain perspective. Please pray that she is able to find comfort and peace while she is on CRRT.

Emy has been off her blood pressure medicine since Sunday evening and has maintained her blood pressure without intervention. This was a great achievement for her because that meant she was finally able to receive breast milk through her G-tube again! This will help her growth immensely.

In addition to her G-tube feeds, the speech therapist tested her oral skills today by giving her milk with a bottle! She started with only 3 mL, but the speech therapist said she did better than expected: no gagging and no spit-up. This is wonderful news because 22q, Emy’s genetic disorder, is commonly associated with palate and swallowing issues. Due to her need for respiratory support, she missed the window of opportunity early on in life to learn how to eat orally as a reflex— at this point, it is a skill she needs to develop. Please pray that she continues to develop this skill in the coming weeks. We are so thankful to God for her progress this week.

Hello all. I want to take a moment to express my gratitude to everyone who left heartfelt comments over the last few weeks. The last few weeks have been very difficult for me and Ezra. We are so thankful to have such supportive family, friends, and friends of friends. We saw your comments and although I didn’t respond to each of them as I normally do, I want to acknowledge them and thank you for sharing your support through this platform. Your prayers have meant so much to us during this difficult time.

I also want to thank those of you who have supported us in other ways— through meals, gifts for Emy, text messages and financial support. Your thoughtful gestures are so appreciated. We have felt very loved and supported through this journey. From the bottom of our hearts, thank you.

I found myself having a hard time this week doing normal things. My energy is spent. Today, I looked at Emy and all her scars and lines and bandages and I thought— she is SO STRONG. She has been through far more than I have been through in terms of overcoming health obstacles. God kept her. He sustained her. He sustains her.

Imagine if you had to have your kidneys out tomorrow. Both of them. You have to live in a hospital and not see any friends or family with the exception of your parents and health care professionals. Your health is uncertain each day. That would be a large burden for anyone to take on, yet Emy does it and doesn’t know anything else. She is so brave. I’m so proud of her.

God used her to give me strength during this journey. If Emy can persevere through not having kidneys, I can persevere through her ups and downs, through medical school, through covid, through relocating (again) and anything else that comes our way. I’m so thankful God brings her through each day. He is the same God that brings me through each day. God is with us.

Emy likes to keep everyone on their toes! The good news is that she was extubated today. She is happy to voice her opinions again. Unfortunately, she is exhibiting the same signs and symptoms she usually has when an infection isn’t under control. The conundrum is that she is currently on broad spectrum antibiotics, so it’s unlikely an infection, yet she has the symptoms of one.

Please pray for God’s hand to be on her at this time— to keep her safe from illness and to give her comfort. Also please pray for her providers to have insight and wisdom as they make health decisions for her. My hope is that her high heart rate is due to residual pain from her surgery, her low blood pressure is due to her fluid status, her low temperature is due to the CRRT fluctuations and the whimpering/restlessness is also due to pain or related to her change in respiratory support since being extubated. It’s hard to know why she is not acting herself. Please pray for the team to identify the source of these issues, to treat them swiftly and for the treatment to be effective.

Emy had a big week. She is still intubated after her surgery on Tuesday. While she is still in a critical spot, we are thankful to see her make small steps toward healing. Not much has changed since her surgery; we’ve learned the meaning of the phrase, “no news is good news.” Thank you for your continued prayers and support. Every challenge Emy has faced, she has overcome in Jesus’ name.

One bright spot of the week was Tuesday morning, before her surgery. She was feeling the best she had felt in a week. She started cooing and even stuck out her tongue, mimicking her grandmomma on FaceTime! She’s one tough cookie; we are so thankful to see her develop despite her health setbacks.

Emy’s vital signs are stable. She is still on low dose BP medicine to keep her pressures up. As Ezra mentioned in the last post, she is on some strong antibiotics— they seem to be making a difference in her condition. She is slowly making progress toward beating this infection. Thank you for your continued prayers. She is still fighting, but she is in a better place this evening than she was this morning. Please continue to pray for the providers and nurses— that they have wisdom and clarity when making decisions that impact Emy’s health. God is sovereign.

Emy started the morning having a better day but is now having a hard time. She is working a lot to breathe and she is still fighting her infection. Her blood pressure is low. Please pray that God heals her and that He gives her comfort.

Yesterday was one of the most difficult days Emy has had in a long time. She was very sick. She had low blood pressure, high heart rate, high respiratory rate and a low grade fever. She looked pale and her extremities were cool to the touch. She was very weak and her cry was diminished to a grunt. Her stomach was distended. She leaked from her G-tube site. Her PD fluid was cloudy and orange.

Based on the clinical picture and some labs, she has peritonitis again. The doctors placed her on broad spectrum antibiotics. They removed the contents from her stomach to reduce the pressure in that area. They stopped feeds. They gave her vasopressin and epinephrine to sustain her blood pressure. They placed an arterial line to get an accurate reading of her blood pressure.

Additionally, last night her blood pressure rapidly increased for no apparent reason, the nurse thought it may have been a seizure. Today, ultrasound and CT of her head showed enlarged ventricles. The doctors will continue to monitor her head and ventricles.

Yesterday was very scary, but thankfully she is doing better today. She is still sick, but she is getting better with the antibiotics. Her blood pressure is stable and she is now off of vasopressin. Her stomach is less distended. She is more alert and her color has returned. Please pray for continued healing for EmyG. Pray that the doctors properly navigate her neurologic findings. Pray for healing for her brain and ventricles. Pray that she is comfortable and recovers from the peritonitis. Pray that she grows and thrives.

Emy had a rough 12-16 hours. The nurses aren’t able to get an automatic blood pressure reading on her, which has not been a problem for her in the past. They are able to get manual pressure readings, which have been normal. Please pray that God keeps Emy safe. Please pray that her blood pressure truly is normal and that the automatic blood pressure monitor works again and is accurate.

Emy has also had a difficult evening from a pain perspective. She has been given a lot of medicine to help with her pain, but she still breaks out in inconsolable cries. Please pray for God to give her comfort while she heals from her latest surgery. Please pray that the doctors and nurses who are taking care of her have insight on the situation and are able to take steps to best care for Emy.

Please pray for me and Ezra as we navigate these obstacles. Pray that we are able to advocate for her while supporting the team she’s been given to take care of her. Please pray for strength, especially in this time of uncertainty.

Emy is doing well after her surgery. The surgeon removed a “fibrous cocoon” from the end of her PD catheter. Today, she is using the PD catheter and her CRRT concomitantly. She had a bout of intense crying earlier today that is likely related to her pain after having another abdominal surgery. Please pray that she is comfortable and that the PD dialysis goes well.