Mayo Clinic Connect
Hi! My daughter is having heart surgery on Monday to repair her mitral valve, can parents sleep overnight with their child in the CSICU?
Liked by Annie Johnson
@alishanjosh, Welcome. As a parent I think I can understand the importance of finding an answer to this question. I do not know the answer, however, my suggestion is that you contact the doctor who is performing the surgery. His/her office should be able to either answer it, or to direct you to someone who can provide you with an answer.
Liked by Annie Johnson, John, Volunteer Mentor, Kanaaz Pereira, Connect Moderator
Here are some details about the Cardiac Surgery Intensive Care Unit (CSICU), pediatric unit; I’ve copied relevant information:
– Children who have heart surgery, heart transplantation or those in need of extracorporeal membrane oxygenation (ECMO) therapy are cared for in the CSICU, an 11-bed ICU with private rooms.
– Location: Mary Brigh Building, fifth floor (MB 5B)
– A primary nurse is assigned to each pediatric patient on admission and a family-centered approach is used. Patient rooms have video-viewing equipment. Photos are taken throughout the hospital stay and photo albums are available to record your child's hospital experience. https://www.mayoclinic.org/patient-visitor-guide/minnesota/clinic-hospital-buildings/mayo-eugenio-litta-childrens-hospital/pediatric-units
Liked by Annie Johnson, John, Volunteer Mentor
Hi @alishanjosh – this is a fantastic question to ask your health care team. Practices vary across the nation and from hospital to hospital. There is a movement more and more now towards family engagement in the ICU, so being able to sleep in patient rooms is becoming more acceptable. There are many things to consider with this such as environmental safety, safe access to the patient, and ensuring quality rest for families. I would encourage you to reach out and ask your care team so you can have clear expectations regarding this important aspect of your daughter's care. Best of luck to all of you with her upcoming surgery.
Liked by John, Volunteer Mentor, Teresa, Volunteer Mentor
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Thank you for your response. I did see this information as well before I posted this discussion, I was just hoping to get more clarity on it. It does state that they are private rooms but I was wondering if these rooms had the availability for parents to stay over night.
@alishanjosh, I’d like to offer a few more resources, which you might find helpful to go through, with regard to mitral valve repair.
Let’s start with these 2 Video Q&As with pediatric cardiac surgeon Dr. Joseph Dearani:
– Heart Valve Disease and Surgical Options https://connect.mayoclinic.org/webinar/video-qa-about-heart-valve-disease-and-surgical-options/
– #AsktheMayoMom on Congenital Heart Disease with Dr. Joseph Dearani https://connect.mayoclinic.org/page/congenital-heart-disease/newsfeed/askthemayomom-on-congenital-heart-disease-with-dr-joseph-dearani/
"Going all out to ease young patient’s fears” https://newsnetwork.mayoclinic.org/discussion/sharing-mayo-clinic-going-all-out-to-ease-young-patients-fears/ is a Mayo Clinic News Network patient story about a 5-year-old who underwent her third open-heart surgery in 2018.
I’d also like to introduce you to a few Connect stalwarts in all things heart-related; please meet @hopeful33250 @predictable and @thankful @petersen73 @frande @yoanne, who may be able to share some valuable insights.
@alishanjosh, may I ask if you would share a few details about your daughter? How old is she? Was she diagnosed with a valve prolapse or leaky valve?
Hi again! My daughter is 10, and having surgery to repair a leaky valve. In July of 2017, she was hospitalized for Sydenham Chorea with Rheumatic Fever turned into Rheumatic Heart Disease. This all started with an untreated strep throat. Sydenham Chorea is the result of this and causes involuntary body movements, slurred speech which upgrades to being unable to form or complete sentences, being unable to eat and dress themselves and help using the bathroom.
After treatment in the hospital, months of speech and physical therapy are needed to retrain the brain to talk, walk, be able to eat on their own, go to the bathroom on their own and anything else the brain tells the body to do. A year and a half later she is now able to function like a normal child with the exception of reoccurrences of the Chorea but that is treated with a antipsychotic medication. Now it’s time to fix her heart because it’s slowly getting worse and worse with each appointment.
She was born a healthy normal girl with no heart problems but from just one untreated strep throat she had to fight to regain control of her body and has to now fight again to repair and heal her heart. She eventually will need another surgery when she gets older to repair or replace her leaky valve because this current repair will eventually give out again.
Liked by Rosemary, Volunteer Mentor, Annie Johnson, John, Volunteer Mentor
My husband could stay with me when I had my heart surgeries. I would think you could stay with your daughter. Good question to ask the Dr. and hospital staff.
Liked by Rosemary, Volunteer Mentor, Colleen Young, Connect Director, Annie Johnson
It depends on Hospital Policy in general i have had good luck having my Wife in the room with me in both ICU and A regular room. The hospital i have been to are Mayo phoenix az and chandler Regional in arizona.
Liked by Rosemary, Volunteer Mentor, Annie Johnson
Thinking of you and your daughter today, @alishanjosh.
Thank you! 😊😁
@alishanjosh How did the surgery go? Did you stay in the room with your daughter? Did you get any rest? I have so many questions. Don't feel obliged to answer them. I can wait until you have time or the inclination. Just know we're thinking about you and your family.
Hi! Surgery went great! Now recovery is a little challenging but she’s doing a great job. I was able to stay in the ICU room with my daughter but my husband had to sleep in the waiting room. It was nice now that the waiting rooms had recliners, not the most comfortable but a lot better than the chairs and tiny couches they use to have! Thanks for responding back!
Liked by Rosemary, Volunteer Mentor, Colleen Young, Connect Director, Annie Johnson, frande ... see all
@alishanjosh I am so glad to hear things went well. Thinking of you all during the recovery time!
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