This year, the involvement has drastically increased. Part of it is Miracles for Mito (www.miraclesformito.org), and that we now are working directly with the Mito Clinic. The other part is that I took on the Parent Chair for Family Advisory Council. Family Advisory Council is a council where parents and hospital staff get together once a month and discuss new policies and procedures coming from the hospital as well as discuss hospital issues and questions coming from parents. I was told that I would co-lead the monthly meeting. That sounded reasonable to me. That was something I could add to my already busy life. What I didn't expect is that the two hospital employees who have been coordinating and leading the Council both left Children's Hospital at the beginning of the year. It has been a lot of work at times, but it is very rewarding to actually make a difference. I enjoy this kind of stuff, working with people, planning out our work, leading the meetings and the efforts in between meetings. There is also a momentum from the hospital leadership to increase parent involvement throughout the hospital. The Council is driving it's own projects for the first time in it's history. The Council now has a Steering Committee consisting of a few parents and the executive management team of the hospital. I can feel the change that is happening, and it is simply cool to be part of this positive change.
Part of getting the word out about Parent Involvement and the Family Advisory Council is to get in front of the hospital staff and leadership team. Last night, Children's Hospital organized the Patient Perception Award Ceremony. This is a National Pediatric Survey that goes out to patients and families on a regular basis. Last night was a celebration of Children's Hospital's departments and individual physicians who have scored above 90% in this survey. I followed after the President of Children's Hospital, and told my story about Team Jacob. I will share my speech here, since this is the reason why I volunteer for this place, for this hospital:
My name is Maria Hopfgarten, and I am the mother of two children, Jacob & Sarah. My 6-year old son Jacob is here tonight, and he brought our family to Children’s Hospital. Jacob has a Mitochondrial Disorder, severe epilepsy, and multiple medical needs. He is seen in over 10 specialty clinics throughout the hospital, and a simple cold or virus will give Jacob a free ticket to the ER, ICU or the 8th/9th floor , not once - but several times each year.
Tonight is an evening to celebrate you all who make up Children’s Hospital, celebrate the excellent work you do every day for children like Jacob.
When you have a medically complex child, you realize that you need more than a mom and dad. You need a Team. Let me introduce you to Team Jacob.
We have two strong willed, determined, extremely intelligent physicians with a big compassion for Jacob. They are together with our family leading Team Jacob.
Amongst family and friends, her code name is Dr. E. Her full name is Dr. Ellen Elias, the head of the Special Care Clinic. She has a wealth of knowledge and experience in caring for medically complex children, like Jacob. In the six years she has cared for my son, I have at times not agreed with her, but she has proven me every time to be right with her decisions. In addition to being Jacob’s primary care physician, she coordinates all of Jacob’s care across all 10+ specialty clinics as well as Jacob’s care when he is in-patient. She is our constant in the middle of new attending physicians, residents, and interns coming through this hospital. Every time Jacob is in-patient (and they can be many times in a year), she makes sure that Jacob is getting the care he needs. She is partnering with Jacob’s medical teams every time. It gives me the peace of mind that Jacob is always getting the care that he needs, and I can focus on Jacob in that moment, rather than having to inquire if we have run all the right tests, is Jacob on the right antibiotics or whatever the question might be. I can only say that I wish each frequent flyer has their Dr. E on their team.
And then we have Dr. C. Her full name is Abbie Collins. She is Jacob’s neurologist, and also one of the physicians in the Mitochondrial Clinic. We originally went to her because of Jacob’s involuntary movements. The first time we met, she diagnosed Jacob with 3 movement disorders that no doctor had previously mentioned to us. In addition, she also diagnosed Jacob with oculogyrical crises, which had led to a very long hospital stay without answers. Dr. Collins wide knowledge in this field gave us confidence from day one.
When you have a child with uncontrollable seizures, life becomes very unpredictable. You never know when a seizure will strike in the house. You never know when you have to call 911. You never know when your child will go into status epilepticus, and what a slippery road that can turn into.
One of the best gifts we have gotten from Dr. Collins was her business card the first time we saw her. It was the standard Children’s Hospital business card, but it also contained her own cell phone number on the back of the card. This is our golden ticket. We only use it when we absolutely have to, but this life line has saved Jacob from many ER visits where we have been able to trouble-shoot a seizure from home over the phone. I don’t know how many times I have talked to her in an ambulance to come up with the right treatment plan for Jacob when he arrives in the ER.
With the help of Dr. Collins, we have also been able to remove many seizure medications from Jacob’s long medication list. I could see that the easier choice would have been to maybe just keep things as they are if seizures are at bay. That was never good enough for Dr. Collins. Over the last 1,5 years, we have drastically reduced Jacob’s dependence on seizure medications. In return, we have gotten back a much more alert, active, and happy Jacob. Jacob interacts so much more with his friends and family than he could when he was dependent on so many more drugs. With each medication decrease, there is the chance of seizures coming back. But since I always know that Dr. Collins is only a phone call away, I have never ever been afraid to remove medications from my son. I know that I am not alone on this journey.
What strikes me over and over again with Dr. Collins is that she is sincerely looking out for the best quality of life for her patients. That is what drives her medical decisions each day. Making life as best as it possibly can be for our kiddos.
People ask us all the time, how do we do it? How do we care for Jacob? How do we manage someone who is very medically fragile, and that can so sudden get very, very sick? I will admit that it can be overwhelming, scary at times, and exhausting at times. But the answer is Team Jacob. We never ever have to feel alone on this journey. We always have these two strong physicians on our side, who will lead the rest of Team Jacob here at Children’s Hospital.
So, my message to all of you here tonight is to create that Team for some of your patients. You can’t do it for all your children you see, but you will know who they are. You will know that child who is in your PICU unit over and over again, and doesn’t seem to have a lot of support from family or doctors. You will know that child who you see in Clinic frequently, and you’re not so sure if he or she is getting the best care possible. Create that Team for that child. If each of you could do that for a few of your patients, it will go a long way.
When you spend so much time in-patient as Jacob does, the nurses become a key part of Jacob’s care. The one thing I want to say is that I don’t know how you do it, but somewhere in your recruitment and onboarding training, you do something right because it doesn’t really matter who is Jacob’s nurse, since there is such a consistency in the care given amongst your nurses. Let it be a new grad or someone who has been around the block as long as Jacob. But we do have our favorite nurse. Her name is Whitney Kube, and she is one of the nurses on the 8th floor. She genuinely cares for Jacob and our family, and she always goes that extra mile to make our stay just a little bit better. She is always on schedule, never late with a seizure medication, and has no problem bringing up questions and concerns to the medical team. When we were in-patient 2 weeks ago, Whitney was not our nurse, but she came and visited with us during her break. When she realized that we were ready to go home, but had been told that we couldn’t be discharged during the weekend due to going home on IV antibiotics, she put the wheels in motion. The next day, case management, the medical team and the pharmacy were all onboard to get Jacob home! When you do spend as much time as we do here, to even get home one or two days earlier than expected, is a big win. There is no place like being home.
Lastly, I want to talk about the really hard times here at Children’s. The two times when I almost lost my son. They are some of my darkest moments with Jacob, but again the care that went into saving Jacob each time, was excellent. The ER doctor Lalit Bajaj saved Jacob’s life on June 9th, 2009 by intubating him before it was too late. It was surreal. I had had a good morning with Jacob at home, and between home and going to Children’s Hospital for a routine neurology appointment, he went from baseline to being really sick. He had pneumonia, pseudomonas, and was septic by the time he came to the ER. I will never forget that day for the rest of my life. But what makes this really stick with me is that 2 months ago when I had spent the night in the ER with Jacob on that tiny little ER bed, Lalit Bajaj came in and shook my hand and said that he was happy to see how big Jacob was now. I was surprised he remembered Jacob, but he did. I thanked him for saving my son’s life 3 years ago, and as we talked, it was clear that that Monday afternoon had also stayed in this ER doctor’s memory. I don’t expect that each of you will remember each incident in your careers, but that made such a difference for me. It wasn’t just another kid that Monday afternoon, it was my child, and this doctor recognized just that. It was the scariest day of my life, and somehow we shared that day together, 3 years ago and today.
That is what makes Children’s Hospital not just a hospital, but our second home. The home Jacob needs when he gets really sick. The place that can help him through a cold, a pneumonia or a seizure. It is the people who make up this place. It is you who come to work every day. It is you who smile to me as we cross paths in the Atrium or ride in the Elevator together. It is you who always bring the best to your job each and every day. You’re all part of Team Jacob, some of you all the time, some of you maybe just briefly, but you are all giving Jacob a chance to life that he wouldn’t have without you all.
A sincere thanks from my family to you all, Maria.
That Dr. Collins and Lalit Bajaj both won individual patient perception awards were of course great! And that I got to share this evening with Jacob, his nurse Gemma, and my friend Heather was an added bonus! And the hospital completely surprised me with a Team Jacob t-shirt! The t-shirts will be handed out to Jacob's doctors and nurses at Children's Hospital, and we also got a couple to share with Team Jacob at home. So cool, definitely a keeper, even for someone like me who is not a big t-shirt fan...
Look at our strong night nurse modeling her new t-shirt:
It was a great evening to celebrate Team Jacob!