After they had taken my son's history, I asked their history. Such things as how they decided to become a doctor, nurse, etc. It's amazing; when you get a person to open up to you, how respectful they become of you and your child. Many began to treat us like family and would work on our schedule.
At the time of diagnosis, it was very scary. Being overwhelmed by the fact that my daughter was diagnosed with cancer and having all these new faces looking at me got to be very upsetting. Now we feel more comfortable with all the doctors and nurses.
My daughter handled the "blood-suckers" particularly well. The first day, she said "you are bad, bad people." The second day, she said "you are bad and you are mean." The third day, unfortunately for a new nurse who didn't know Jessica, was told "You are bad, you are mean and you are ugly!" She was four years old at the time. Her nickname became "Spunky."
My son, who is a video game fanatic, decided to have a list of nurses and doctors who were on his "team." Word soon got around the floor to check Ralphie's list to see if you were on his "team." They would do anything for my son to be on his list and chided those who were not. I didn't mind all the visits by hospital staff, they were very professional and kind. Also, sometimes it's nice to know that when no one else visits, you know they'll be in sooner or later.
Our daughter (age 3 at dx)handled them for us! Within a month she had figured out if she faked sleep, residents, interns, and even her own attendings would sneek out without bothering her. If I wanted to talk to them, I would follow them out of her room. If I didn't, I would smile and say, "Shhh" (even though I KNEW it was a fake). It worked terrific with docs, dietary etc. But, as our daughter found out nurses just came on in and did what ever they were going to do anyway so she decided to keep her eyes open to keep an eye on them.
We got to know our doctor and nurses well. Each shift, everytime our son was in the hospital he had the same nurse. Our night nurse once posted a sign after Mom and Son had a rough night (reaction to platelet transfusion is no fun!) that said "Unless you are my dad or my nurse, keep out!" Our doctor enjoyed this and let him keep it up. Whenever he was tired and didn't want to be bothered, we shut the door and put the sign up. Also, if he was sleeping, we made the med students come back later. The nurses had a note on his chart that NO procedures were to be done unless we were with him. They even made sure we were there for x-rays. Sometimes we had our son give his medical story to whoever was asking that day.
They were all very nice and helpful.They only came in when needed, and the rest of the time they gave us our space.
With a smile and a prayer
Stayed as attentive as possible and asked lots of questions.
We made a game of remembering their names and what they did. We also told Michael that all of these people belonged to his "fan club".
When Grant was first diagnosed, I tried to keep a list of everyone who came in and who they were. It's was mind boggling and after that first admit I just gave up. As long as I knew his doctor and nurse I was happy. After a few months you get to know who is who anyway.
I asked lots of questions and wanted to know everything that was being done.
Almost everyone of the doctors we have met so far have been wonderful (with a very few exceptions). They have sat on his bed and played with him with his Nintendo 64, ate bubble gum from the bubblegum machine we placed at his door (a penny each), and have little goofy routines that many have developed with him over the last several months. Tommy especially likes seeing everyone who enters his room shell out a penny for a piece of bubblegum. We keep extra pennies by the machine so that everyone can "buy" some gum. Each visitor, doctor, or nurse is a potential customer.
I constantly waited for any doctor to come in so I could ask him questions.
Kept a log book full of notes
We got used to the "teams" and got to know who did what and who we needed to see if we wanted something.
We were bemused. Thankful for someone to be there. Read name tags.
I spoke individually with each one even though many times I felt like a broken record...
Learned all their names so no one was ever a stranger.
I just tried to get to know them and their purpose. Personally, I welcomed them I wanted EVERYONE in the hospital to be working to make my son better.
After being
asked about my son's medical history for the 100th time, I
typed up a detailed history to give the residents. I had
answered their questions so many times, I could write out the
history in the order that they asked it. I also included
requests such as not being interrupted while we are sleeping
or eating, only two doctors in the room at a time and only
one person from each team examining my son. It made
admissions much more bearable because we controlled the
situation. I wish I had done it a lot sooner.
One thing that helped tremendously was that my daughter wrote her own note to the doctors; I then put it on the front of her chart for them to see. In it, Brianna (then 6) made her requests such as:
- Don't tell me it doesn't hurt that bad; it's my body and I know how it feels, not you.
- I don't like counting before you poke me or knowing when the red worm is coming (blood through her tube). One day, someone came in and asked if he could listen to her heart and lungs. She said "No, I'm playing." He tried to persuade her that it needed to be done and she yelled, "Why did you ask me a question then ignore my answer?" My heart says 'lub dub' and my lungs are clear and if you don't believe me you can ask one of the others who just listened to it!"
We asked that no one planning an exam or medicine or anything, do it while we were not there.
Wrote down their names, jobs and what was said to us
I wrote down names and titles and would review who was who with Eric's nurses.
We kept a daily journal, logged in who, what they do, etc. We realized that the conventional treatment our daughter received before diagnosis could not and never would have cured her and we had to realized and accept that her future health concerns lay in the hands of these specialists and their many tests & procedures.
We made sure the residents understood, that as parents of this child, we had responsibitity for his psychological well-being as much as they had for his physical. We didn't interfere in matters of important medical care, but if a resident wanted to poke and prod at 6 a.m. to get a "head start" on the other students, the physician on call would hear about it real quick. I always ran counts and labs by
our primary hem/onc to make sure she was on board and let the other residents and physicians know this. Only our son's primary hem/onc (or transplant doc at BMT time) was allowed to make decisions on invasive procedures or changes in important meds.
I asked for business cards from everyone, and asked them where they fit into the scheme.
I finally asked an experienced nurse who seemed to have taken special interest with my son how to keep everyone straight. She shared with me what I call the "coat code"--short white coat=med student; long coat with pin name tag=resident; long coat with embroidered name-attending physician, etc and what each person could do and not do related to my son's care. I wish I'd have asked sooner !! I'd been asking the wrong people to answer questions and once I had the right "target" doctor, my frustration decreased right away.
I would ask questions if I not sure what there role was I would find out. I kept a journal that I would write down everyone who came in and what they said.
Takes an awful lot of patience! They come in first thing in the morning and they all ask the same questions. Still don't know the difference between a resident and a fellow and all the rest, but I discovered that if I answered their questions and they'd go away!
Most often, the doctors are quite accommadating and we don't seem to mind the intrusions as
long as they are considerate. What we do to ease the situation is to share the hospital duty (my wife and I swap out). We try to act as buffers to make sure our daughter doesn't have too many intrusions when she isn't feeling well.
I think I was too numb to really think about it, I just figured they were all there to help my son. It wasn't until after the hospital stay thay I educated myself on who is who and what role each one has in my son's treatment.
As a Medical Technologist, I too, wanted all the available information. We limited the number of people that were able to see my son and "check him out." I made copies of the hospital's admission history pages and handed them to the nurse when he was admitted. I also required people to read his chart before they asked any questions.
We were admitted and released from the hospital 3-5 times every month. One late admission, five resident female doctors wanted to do a rectal exam on my 12 yr old son, who was admitted for neutropenia, low platelets and high fever. I told them to be my guest, but that they had better call security, because that was what it would take for them to do such an exam. I then told them that I was going for a cup of coffee and they were on their own. They decided the exam could wait until the following morning with his male oncologist. He cooperated fully.
We posted signs that requested that everyone who entered the room, knock first, and WAIT for the reply to come in and introduce themselves to us. I ran a lot of interference for my son. He hated being poked and prodded by any old person. If a several people need to see a scar or listen to his lungs, one was permitted to do so and discribe to the others. We figured they could take turns. Even at teaching hospital there has to be some limits.
I was very scared and sometimes felt as though I had no say about what they were doing to my child and that I had to give up control of my child while they are there.
If Joseph was sleeping, especially early in the morning when the residents like to stroll in and pounce on your child, I always posted a note on the door with specific instructions ("he's finally sleeping, please DO NOT wake him"). That way, only his primary doc could really come in and disrupt him, and only for something important. Other than residents, there's not a parade of doctors coming in and out at our hospital, they work hard to make sure one doc is coordinating everything. The real problem is the mob of dietitians, aides, cleaning people coming in to disturb a sick child, or a family that's finally getting a little time together for something that's really silly, or to take a history for the hundred millionth time, etc.
We requested one primary attending to be assigned to our son, and most medicine changes and treatment decisions were handled through him. When he had a stroke and neurologists, pain specialist and physiatrists came pouring in by the dozens, we just put up with it until we could get home. I finally told our oncologist that I didn't want to speak to any more neurologists. As for residents, well it just depends on the resident. If we had a good one on the floor, I could depend on that person for a lot of help and understanding. Several times we had the same resident who seemed to enjoy coming in and checking our son's bottom shortly after he had started his afternoon nap -- usually while I was taking a break so I came back to find a very upset child and no sign of the doctor. Finally, if I left his side while he was napping, I peppered him with signs written on paper towels to saying things like: "Let sleeping babies lie," and "You wake him, you own him." This resident got the picture. Generally, if I was overwhelmed, I asked for communication to be conducted by one doctor, one resident and one fellow, and have all the other docs talk to this "team."
At first I paid attention to them, then it got to be more like a whirl wind of activity. I had to ignore the nurses, and pay attention to the doctors that were there to poke and prod, and the ones there to take my son away for some procedure or another, during his 49 days in the hospital.
We told our oncologist it was hard for our daughter to heal in this environment and that if the doctors didn't stop coming in, we were going home.
We were losing faith in the triangle of residents and staff so we started to have weekly conferences with the doctor, nurse practitioner, counselor, and social workers to clear up any problems. It helped immensely.
I would think of how these doctors must have been as children. Probably Nerdy and probably had the $%^* kick out of them by other kids, but they still persuded careers in order to help other people, so I would feel so for them therefore finding them less agrevating.
The "how was your night?" report was sometimes asked of me many times--and often docs were stopping by before I'd gotten showered or dressed or HAD COFFEE, for that matter. I was also frustrated with seeing what one person thought was a good night was considered by another to be a bad night. I started keeping a narrative log of sorts--time and relevant information about vomiting, pain complaints, toilet use, other things I wanted to be sure the staff knew. I just kept this on the tray, and when asked "how was his night " I could refer them directly to the log if I wanted, or if I just wanted to tell them my impressions, I had immediately accessed and accurate data for them. I felt like my comments and perceptions were taken much more seriously after I began this.
Doctors would always come in my room and start asking questions or talking and I had no idea who they were or what they were there for. I soon began asking them their name and what department they were from before I even started answering questions. I wanted them to respect me as my son's parent and that I was important in his treatment rather than just a pain to them that they had to deal with.
We asked that the doctors write all the details down everyday when my son was in for his transplant. It was hard to remember all the details they told us in the morning about blood tests, x-rays, what things they were looking for. We were at a teaching hospital so when they came to do rounds there was a whole team about 12-15 people every morning. We requested that only the necessary people come in; my son and I had begun feeling like like we were animald in a zoo being inspected. They respected this request and it made hospital living a little more tolerable.
We basically found out when the doctors had to come in for rounds. Then we told them they would all have to come by then at the same time, so only one would have to listen to her while the others watched. They didn't like it, but eventually realized that we were not going to back down.
I finally set ground rules. Pointed out that she was a baby, and a sick one at that. She was sleeping by nine, and that meant that oral meds were to be done by that time or they wouldn't get it in.
I journalled who was who, especially during crisis points, and jotted down their purpose for being there. I made sure I'd ask them questions concerning my children's conditions and sometimes would verify their answers with other Doctors. I've learned that Doctors are not God, and even though they seem to know what their talking about, I can presume that they don't. I often research what they tell me is happening with my child because I have learned the hard way, that even the best of Doctors make tragic mistakes and errors.
I told all residents, students, etc. that they were to read the chart before asking any questions. All seemed to think that their questions were the ones that were going to "turn on the light" and figure out what causes cancer. They also asked very stupid questions (how did you feel about the diagnosis?, etc.). Once we found our pediatric oncologist, we never had any further problems. He was the one who always saw her and there was a continuum of care.
I was very up front with my need to be communicated with, every step of the way. When someone new would walk into my son's room, I was right up and in their face and found out who they were and what they were planning to do. I am a R.N. and I have been around doctors and hospitals for years, so I am not afraid to get right in with what they are doing.
Since we couldn't exactly throw them out ( though I wish I could've with some) I made sure I was there for the important ones and made sure that they addressed my daughter and not just me and if I couldn't be there I'd ask for one of her favorite nurses to be present.
After being in the hospital for several weeks, we set limits: no waking Kevin in
the wee hours of the morning to listen to his lungs, heart, etc. We also tried to combine services. For example, if Kevin was having an MRI which he was sadated for, we would request that his stitches be taken out at the same time, that the ENT people look at his throat and that his spinal tap be performed at this time.
We tried to be nice but always tried to expedite the "visit." If we didn't know what they were doing or why they were there, we asked. We made sure they knew that we were uncomforatble enough without all the invasion
We asked that only a certain few doctors be permitted in to do "checks" daily because there seemed to be a lot of repetition. It was really exhausting and hard to remember which doctor was there for which purpose.
When our daughter could not take another visitor, we closed the door and tlurned off the lights. My husband or I would stop them and say "She's asleep right now, you'll have to come back later."
If they were there for necessary treatments, we would try to make Emily feel safe until they departed.
It was a little confusing, because some of them wouldn't introduce themselves, and it was frightening, because it made me feel like there was more wrong than just cancer if they needed that many people coming in.
We found the constant meds every four hours during the night and observations made for never sleeping and our 8-month old baby was very distressed being poked and prodded at 10pm, 2am and 6am. So we said NO obs to be done at 2am. Also viewing the medics as on your side and all working for the same goal which is to make your child better! Sometimes it seems they are the enemy and all you want to do is GO HOME and deal with the cancer yourself.
