My daughter is totally dependent on machines (ventilator, cough assist, IPV, feeding pump, nebulizer, pulse-ox, oxygen, and suction) and cannot do anything independently without help from her parents and nurses. She will never be able to sit, stand, eat, breathe or move without assistance. Her mind is unaffected, and she dreams big just like any other little girl. I was recently discussing how much we appreciate Kim with another one of our daughter's homecare nurses, Janet Randall. Janet also shared with me how much she appreciated how hard Kim has been working to provide our daughter with the best care possible. When nurses work well together, it ultimately ends up benefiting the patient and creates a smooth working environment. Kim goes above and beyond her nursing responsibilities. She takes full accountability when she is providing care for our daughter and does whatever needs to done so that she receives the best and most thorough care. Kim is our daughter's PT, OT, SLP, Teacher, RT, Child Life Specialist, Friend, and Nurse. She is the kind of nurse that "walks the talk" and leads by example. When she is providing care for our daughter, she is totally focused on our daughter's medical, emotional and physical needs. She has completely immersed herself in our daughter's care so that she is now able to anticipate and plan for any situation that might arise. Kim's vigilance in her care and communication with our core team of nurses has helped keep her healthy and out of the hospital.
Kim makes our family feel safe and accepted. It's always been hard for us to step away from our daughter and allow others to provide care for her. We can't physically provide 24/7 medical care for her, so we have to relinquish control to nurses, and it's scary. Kim has had open discussions with us about what our needs and wants are for her. She has tried to put herself in our shoes and has shown us so much empathy and compassion. It's not easy caring for a child with a terminal illness that has so many complex medical needs. Kim treats our daughter like she is one of her own and it's evident in her daily interactions with her. Kim can perform all of her skilled nursing duties while also keeping her entertained and distracted. I walked in on Kim the other day doing her invasive IPV treatment, and she was dancing and singing with her (she managed to keep a sterile suction hand the entire time). She loved it and was completely entertained. Kim also understands that her mind is unaffected so she is always coming up with new interactive play activities with her. She found new pages on our daughter's Eye Gaze computer that she could use and also made a list for other nurses to follow. Kim hooks up special switches for her so that she can access her environment and encourages her to play and engage with her. What fills my heart with happiness the most is that Kim talks to her like she is a typical little girl. There is no indication that something is different with her.
Kim has brought a lot of knowledge and experience to our team. She has helped me safely operate an IPV machine, ambu bag, cough assist machine and troubleshoot a ventilator. We recently had a scary incident during a trach change but Kim was calm and walked me through it. We went to do a routine trach change and I wasn't able to get the trach back in. I tried several times and still couldn't place the trach. Our daughter doesn't have the strength to breathe on her own so not being able to get a trach in is very terrifying. Kim calmly told me it was going to be okay and to try again. She didn't get frustrated and was able to quickly solve the problem. She repositioned her head and shoulders in a way that made the trach placement easier. I am so thankful Kim was there that day. We now position her the way that Kim did and we haven't had any major problems placing the trach since. Kim understands how important it is that all of the nurses on our daughter's team work together and that everyone on the team is comfortable with all aspects of our daughter's care. Kim volunteered to train all 6 of our night nurses on her respiratory treatment routine so that she can get treatments round the clock when she's ill. Kim went to the office on 3 of her days off to train the nurses. Our daughter's routine is invasive and is mainly done in a hospital setting. We are the only family in private duty nursing that has an IPV machine, so this training was new to all of our six night nurses. We use the IPV through her trach along with Cough Assist. There are several steps that have to be taken to safely use IPV, so Kim developed a safety check-off list for all of the nurses to follow. It's now taped to the front of our IPV machine. Kim is also working with the night nurses in our home so that they can safely perform IPV and cough assist on her. Kim also worked with her PT and mom to develop visual positioning guides to help the other nurses to best position her. Our daughter is contracted and is at a high risk for fractures, so she has to be carefully positioned just right. All of her nurses use these positioning guides, and we've noticed a difference in her hamstrings since we started using them. Our daughter also seems more comfortable. She had a recent spine surgery, and the wound ended up dehiscing. The dehiscence resulted in wound care and dressing changes. The wound team was very specific on how they wanted us to care for the wound. Kim stayed past her end of shift time to demonstrate to an oncoming nurse how the wound should be cleaned and covered. This was very helpful because this nurse had not done wound care on our daughter before.
We have always felt very respected by Kim. She gives us her full attention and listens carefully to everything we have told her. She always tells us that we are the experts on our daughter and that we know her best. She doesn't ever assume to know it all. It's very comforting that Kim is open-minded and understands that every patient has unique qualities and life experiences. Kim has asked questions about our daughter's care and why things are done a certain way, but we've never felt judged or uncomfortable. She has presented them in a way that is patient focused. Kim wants the best for her and wants her to live the fullest life possible.
Kim includes us in every aspect of our daughter's care. We recently went through every single order on her plan of treatment, and she asked if I agreed with everything and felt comfortable with the orders. She also asked if there was anything missing and if there was something that could be added that I felt was important. She then took this information to our clinical care manager so that her plan of treatment could be updated. Kim also sends weekly updates to our clinical care manager. This information is often communicated to the rest of her core team. This is extremely helpful and provides continuity of care. Kim discusses all PRN medications with me and has asked what my comfort level is with using them. She has made sure that we are on the same page and in agreement on all medications and interventions. This has made me feel very comfortable. Kim recently discovered that some of our daughter's supplies were expired or about to be expired. She helped me establish a schedule in our home to check expiration dates on medications, supplies, and formula. We now have a sign-off sheet in the home and items are checked and rotated the first of every month. We also have an orange flag on all medication boxes that read, "use next" so that we are using the medication that is closest to expiration. This has helped us safely use all medications and has saved us money by not having to dispose of expired items. Kim helped me set up her wheelchair so that we could safely travel with her and have everything we need within an arm's reach. Our daughter's chair holds a pulse-ox, o2 tank, ventilator, cough assist, ambu bag, emergency bag, a suction machine with supplies, diaper bag, and various positioning pillows. It was challenging to find the right spot for everything, but we are now very organized. All Thanks to Kim Grote!