If you didn’t know, I’m a last minute planner, and it drives my Type-A first born daughter ridiculously crazy. Anyway, I wasn’t real worried about planning for Halloween, as we always come up with costumes, and the creativity that comes with last minute planning is kinda fun. (most of the time. Sometimes it’s stressful…) It’s also resourceful! This year was NOT stressful, which was awesome!
Ruth Ann had a LaLa Loopsy doll costume thanks to grandma and a yard sale this summer. She was way ahead of the game this year! Knowing we had a doctor costume, I figured I’d better put the bug in Josiah’s ear, so if that didn’t work, I could start thinking of something else that he would find acceptable. As soon as I mentioned it, he was excited! He also proceeded to tell EVERYONE that he was going to be a doctor for Halloween. Samuel decided to be a hunter, and thought it even better that we allowed him to carry his BB gun with him (it wasn’t loaded!). Grace wasn’t sure what to be, and decided to be Josiah’s patient. I wasn’t sure exactly how we would pull that off, but knew it could be done. I found Nathan’s old knee brace for her leg and used one of Josiah’s arm braces for her arm (she’s small!) and her and a friend picked out an outfit, put bandaids and wounds on her face and arm, topped off with a bandage around her head. It was pretty cute, and it all came together around 5:00pm last night, right before we headed out to trick or treat!
I have to say that I was a little shocked that Josiah agreed to be a doctor. He knows doctors very well. He knows that a trip to the doctor usually means a shot, blood draw, or IV poke. He has the Beads of Courage to prove it! Yet he agreed to it! (Perhaps he wants to be on the OTHER side of the table!) 🙂
Regardless of his reasoning, I believe that it is only because of the amazing care we have received through MU Healthcare that Josiah was excited to be a doctor for Halloween.
The last appointment Josiah had was with a dermatologist last week. He was fine with going, but did repeat that he did not want to get a shot. I probably heard that phrase 100 times within an hour; no exaggeration. I did reassure him there would be no shots. He informed the doctors and nurse, and they were very understanding. And Josiah was still friendly, talking to them, telling him about being a doctor for Halloween, about the cartwheels that he does, which then included a demonstration, and all the other things Josiah likes to talk about. I love how friendly he is, even in a situation that he is unsure about.
I personally think it’s crazy that Josiah will avoid auditoriums, church sanctuaries, pavilions at the park, and anywhere else he thinks there will be people clapping; all because he cannot handle the noise. Yet, he’ll walk into a doctors office without a problem – even when he knows he has to get a shot. I think it speaks volumes for our healthcare providers that even though most visits require a poke of some sort, he still goes willingly – and happily!
The care we have and continue to receive through MU Healthcare is AMAZING. We are VERY impressed with each doctor, nurse, and staff member within every department we’ve been in.
We absolutely love our family physician. He is wonderfully amazing! He has been our doctor for almost 12 years now. When we learned I was pregnant with Grace, we began the search for a family physician. This doctor was the first one we saw, and we had no reason to continue the search! He delivered both Grace and Samuel, but unfortunately, was out of town and unable to deliver Ruth Ann and Josiah. Ruth Ann LOVES going to see him, and sometimes I think she hopes to be sick just so she can go! Josiah loves going as well, and it probably helps that it’s the nurses that give shots and not the doctor! Even when he was right out of surgery and very clingy to Nathan or I, he would willingly go into our doctor’s lap. Grace and Samuel also enjoy him, although now that they’re older, they rarely see him other than their well visits each year. They all love his Donald Duck voice! He has been with us throughout Josiah’s journey. I remember when he visited us after the surgery, he said that Josiah was his first child to have this diagnosis, but was going to keep him as his patient, working closely with all of Josiah’s new doctors and learning what he needed to in order to be able to provide the best care. Now, we just need to convince him that he can never retire!
For a very long time, our family physician is all we knew. When we moved away from Columbia, many of my friends wondered why I would keep our doctor and make the drive to Columbia. We even chose to have our babies delivered at Women and Children’s Hospital. Nathan had hoped to be able to have a good reason to speed on the highway to get me to the hospital because I was in labor and about to have a baby at any moment. That didn’t happen, thankfully! When Josiah was diagnosed and spent time at the hospital, my friends then understood why we chose to keep MU Healthcare as our primary care, even if we had to drive. In fact, I’ve told Nathan I don’t want to move to Texas because I don’t want to leave our doctors! (one of several reasons, but it’s a big one!)
The first stop we made with Josiah was the Pediatric Procedure Suite and MRI. Then to Neurosurgery, Endocrinology, Opthalmology, Surgery, Pediatric Intensive Care Unit at the hospital, Pediatric Floor at the hospital, Neurology, Oncology, Pain Management & Rehabilitation, and Occupational and Physical Therapy.
Our neurosurgeon is wonderful; both in her skill as a surgeon and in patient relationship. I remember late one evening she stopped by Josiah’s room to check on him – after she had completed a very long emergency surgery. We were also very pleased with the updates we received during Josiah’s surgery. The nurse in the waiting room that day was excellent and a joy to be with during the day. We would sometimes spy her and wave as we walked through the surgery unit on our way from oncology to get an MRI or on our way to the PICU on chemo days.
Our endocrinologist is wonderful to work closely with, as we learned (and continue to learn) to understand all of Josiah’s pituitary gland deficiencies. He is readily available when we have questions, and if unavailable, refers us to someone who can help right away.
Everyone on our oncologist team is wonderful as well! The receptionist when we first walk in is always happy to see us, ready to order Josiah’s breakfast, and plays for a few minutes with him. The nurses are all great, and we love getting to know them all. Sometimes the nurses are from the pediatric procedure suite next door, and they’re great as well. And the child-life specialist is always great with Josiah, remembering what toys are his favorite and which iPad apps he prefers when she’s distracting him for an IV placement. Last, but most definitely not least are the nurse practitioner and two oncologists. The nurse practitioner is our contact person, scheduler, very knowledgeable, and great to work with. Our oncologists are wonderful as well. They don’t always get to see Josiah’s good side, as he wasn’t the happiest by the time his port was accessed, he was tired, and ready to just go home. We often make them the bad guys, because when Josiah asks about taking the port access or IV needle out, we just tell him he can as soon as the doctors say he can. So the first question he asks as soon as he sees them is regarding taking the IV out. “Yes,” is not their answer… Josiah will usually smile once they’re out the door; sometimes they catch a glimpse.
Our rehabilitation doctor is very knowledgeable and helpful in getting Josiah what he needs for therapy, bracing, and helped make sure that insurance would not be a problem for us in this area. She has done all of Josiah’s botox therapies in his arm and hand, which has shown great progress. We also see her in a clinic where Josiah is evaluated by speech, occupational, and physical therapists, a nutritionist, and an orthopedic surgeon. (Orthopedic surgery is not something that Josiah needs right now, but as he grows may be a concern. It’s nice to know he is following Josiah and we can catch things early if need be.) We go once a year to this clinic, which takes a couple of hours. It’s great to have a comprehensive look at Josiah all at once.
We spent a handful of days on the Pediatric floor of the hospital. Two out of Josiah’s 28 days following surgery were spent on this floor, along with the few times Josiah was admitted due to fever. Anytime Josiah had a fever while he had his port in for chemotherapy, he had to be admitted into the hospital. Once again, everyone was great to work with and very understanding with all of our concerns.
Perhaps the people we know the most, and have for sure spent the most time with, are those in the Pediatric Intensive Care Unit (PICU). I wrote about our experience in detail in the first of a four-part series, Daisy award.
We spent 26 days with them following Josiah’s surgery, and then all day on Mondays during Josiah’s chemotherapy treatments. All the nurses, residents, child life specialists, and everyone else we saw provided great care. It was nice to hear that the different nurses all wanted Josiah as their patient whenever we were there!
The four doctors who rotated through the PICU are also the same doctors who do Josiah’s sedation for his MRIs. We always enjoy seeing them when we go back for MRIs and wonder which one of them we get to see. They’re all glad to see Josiah and see how well he is doing and how big he is getting. Among all the nurses and residents who were in and out of Josiah’s room on a daily basis, those four were the constant. One of these doctors is one who told us about Josiah’s tumor following that first MRI. Another was first to greet us after Josiah’s surgery as they got him settled into his new PICU room. One always has a smile and a story or a joke. Another helped to give Josiah a birthday celebration when Josiah had chemo on the week of his birthday. They’re all so wonderful, professional and very personable. I know we don’t know them personally outside of the hospital, but yet, we still feel like we know them so well.
One day during Josiah’s chemotherapy, I ordered from the kitchen for lunch, knowing all the options without having to look at the actual menu. That same day, I was in the elevator at the hospital and was mistaken by one of the staff members as a fellow staff member! I think that’s when I knew we had been at the hospital way too much!
But, if we have to be at the hospital, MU Women’s and Children’s Hospital is the place I want to be! I thank God for blessing us with each and every one of our doctors and nurses who do an excellent job caring for Josiah, and for all we’ve come in contact with while there.
One question I would like to ask…is this what doctors look like after a crazy long shift???