Natalie has had LOTS of genetic testing. There’s never been a diagnosis that encompasses more than one or two of her … issues. I remember her old neurologist – back when she had seizures – said he was sure she … Continue reading
Here are some previous posts about communicating with doctors and other medical personnel. This is one of our most important AND challenging jobs as parents/managers of chronic, complex care needs.
Feeding via g-tube for medical reasons requires oversight by a physician. The only way to obtain the necessary supplies is via prescription. The durable medical goods (tubes, syringes, pumps, etc.) supplier needs a prescription in order to send the necessary equipment to you.
That being said, what food you give through the g-tube does NOT require permission from a physician. THE EXCEPTION to this is various medical conditions that restrict a person’s diet, for example diabetes, PKU, metabolic disorders, etc.
How old is your child/parent/self that is being fed via g-tube? Think of what a person that age normally eats…. For instance, two – five year olds can be pretty fussy about what they eat. Very often nothing green! Grilled-cheese sammies, peanut butter on crackers, apples, carrots, fruit snacks, am I right?
The point is that you don’t have to create absolutely perfect nutrition to feed someone via g-tube. The recipes aren’t as important as just seeking to feed healthy foods. When calories are a big concern then calculating the calories is important. Multi-vitamins are important. There are many supplements that are essential in our diet that may not be found in our foods, such as iodine.
When you want to switch from “formula” to blended meals, you do not have to get your physician’s permission. You can just do it.
If you want to discuss it with your physician, go ahead. If they balk at the idea, ask about the biggest cautions/concerns. You should receive important information in response. If it is vague and evasive, then ask if there are specific health concerns related to diet for your particular situation. Continue to maturely ask questions to get to the bottom of your doctor’s concerns so that you know what they are.
Some doctors are only concerned about contamination. This means washing the tubes, syringes and blenders well. Every time.
The bottom line is this: if you switch to blended meals you will be able to verify the effect of them in your situation. The weight, health, vibrance, and other things you will notice will be your evidence.
Having fed my daughter blended meals for years now, the doctors at the hospital are quick to say, “Don’t change a thing. She is doing well.” That is their reaction NOW, but they wanted me to keep her on formula back “then”.
Instructions about care of g-tubes was woefully short 9+ years ago when Little Miss got her first one. Doctors, nurses, surgeons, hospitals all fell short in helping us know how to best manage a g-tube. I have learned many things:
1. Keep it dry as much as possible. Even let the sun get to it once it is healed. At night when sleeping, uncover the area to allow air to circulate. One of our biggest problems emanated from too much moisture seeping out and onto the skin.
2. Once the site is healed, bandages and ointments are not usually needed. A “flat”/low profile button is easier to manage than one with a tube protruding. If ointment is prescribed for hypertrophic tissue, etc. be SURE to get it only on the designated area. (Yes I have a story about this. Maybe another time.)
3. If anything looks strange, have your doctor LOOK AT IT. (Yes I have a story about this also. Maybe another time.) All the verbal description you can manage doesn’t compare to having it eye-balled by a doc.
4. Check the balloon volume every 4 – 6 weeks. How does the volume reduce? I don’t know. But it does. If it has reduce significantly there must be a leak and it is time to replace the button. Little Miss’s balloon has 4 cc or ml of water in it usually. This is enough to keep the whole thing from popping out, without taking up too much space in her tummy.
5. Insist with your insurance company that you need at least two spare buttons on hand. We had only one spare years ago and when we had to change the button and the new one leaked we were up a creek. Currently, we have two at home and one at school. Just in case.
6. Keep an old button and glue it to the tummy of a doll. You can even punch a hole in with a nail or any of multiple tools and render a doll g-tube fed. This was helpful to our daughter although she doesn’t care about it now, at nearly age 11. Kids always like knowing they are not the ONLY ones!
more pointers to come…. stay tuned. If you have any questions, just drop me a comment or email!
Whew.. life is hard. Life as a parent of a child with special needs is harder. Ongoing caregiving of medical needs is hard. Whether it is therapies, assistive devices, g-tubes, trachs, seizures, wheelchairs doesn’t matter. It is hard. Very hard. It is exhausting and lonely. It is wearying.
Weary is defined as exhausted in strength, endurance, vigor, or freshness; having one’s patience, tolerance, or pleasure exhausted. Well now that we’ve straightened that out (as if we didn’t know) what do we do??? Burnout is not an option when it is your own child. You gotta be there.
I have found two important tools for myself. I’d love to hear what you do….
First, I get out. Alone. I walk around the block, talk to no-one. I am an extrovert, but walking around a pond by myself not even trying to think is amazingly helpful to me. I don’t even understand why. If I cannot get away from the house by myself on a given day, I go out on my deck and hide from everyone. I have to find a spot where I cannot hear the voices of anyone I know. It is so peaceful.
Second, and this is the one I hate the most, I grieve. Yeah, cry, and get all puffy eyed. But first I recall all that I am dealing with, all the duties, all the disintegrated dreams, all the losses of every kind. I want to grieve specific losses.
Grieving seems wrong somehow: “I should be grateful.” “Does this mean I don’t love my child?” “Other people have worse situations.” Yes they do. So what? That’s my honest response. This life with its shattered dreams and heavy workload is not anything like what I envisioned. It is filled with hardship and that is the truth. A scale that measures the magnitude of your grief does not exist.
Yes my daughter is delightful. Yes I love her like crazy. Yes she makes me laugh and I enjoy spending time with her more than plenty of other people I could choose to be with.
- No she will not ever be able to tie her shoes.
- No she will not ever be able to feed herself.
- No she will not ever be able to multiply numbers.
- No she will not be able to clean her own feeding tubes and syringes.
- No she will not be able to manage her own health care.
- No she will not be able to have children and raise them.
- No she will not ever be safe on her own.
How can I not cry about that?
Yes I still have lots of fun in my life. Yes I have good friends that I adore. Yes my husband is a wonderful man. Yes my other kids are fantastic.
- No I will not ever stop worrying about her.
- No I will not ever be an empty nester in the truest sense of the word.
- No I will not be able to go back to school later and pursue another line of work.
- No I will not have the freedom in the later years of my life that would allow me to travel, etc.
- No I did not choose this life I am living.
Is it wrong for me to be sad about any of that?
No. I don’t think so. To deny emotions is to hold onto them. They don’t evaporate. To express them is cathartic and cleansing. Only then can I, can we, take a deep breath and continue on in this life we’ve been given. Only after the catharsis can we help our wonderful brains take over and say “I love this child. I can do this.”
Sometimes it doesn’t feel like we are living life. Sometimes it feels like life is living us. That we are the power source for the lives around us. But we are more than batteries. We are more than the pedals on a bicycle. We are women (usually). We are strong, dedicated, emotional women.
Whether anyone else sees it or not, we are heroes. Even heroes need time to themselves and a place to let tears flow.
here’s my contribution to your schadenfreude: (enjoyment obtained from the troubles of others).
Just about a year ago, I had hard chest pain at a public place with a medic on duty. It had lasted long enough that it had to be checked out. I asked if he’d take my blood pressure. He asked why and that’s when I lost control of my weekend. As soon as he heard “chest pain” he was obligated to call an ambulance.
So off I go to the E.R. for no apparent reason, as I was fine. BUT the results of my tests had to wait a day to be reviewed by a cardiologist. I had to spend the night.
That’s when I blew it. I had the nurse call my doctor. I asked him questions, told him how the staff was failing me (they were not giving me asthma medications), said I was going to leave no matter what and then I yelled at him. For about 3 or 10 sentences. I don’t even remember what I said. But I felt terrible about it and had to call him some days later to apologize. He said he didn’t remember it, but I think he was just being kind. Either that or he gets yelled at a lot.
Here’s the part you can laugh at: there is a post in my archives titled “Doctors and Communication: You don’t have to get angry” Go ahead. Guffaw.
Sometimes you don’t have to get angry might be more accurate. From other experiences coming to mind, being angry has made the difference in getting better care. Sometimes. I don’t think I’ve yelled before. Who knows what I’ll remember by this time tomorrow. At the very least I have to admit the truth. I was impatient, rude, accusatory, and I yelled! He didn’t deserve it. Someone did, but not him.
So communicate without anger? I’m trying. As one of my older sons would joke, “Mom, you’re the most trying person I know.”
a work in progress. that’s me.
An acquaintance of mine is struggling with getting answers from the resident and nurse at the hospital where her husband has been admitted. He is in a teaching hospital, which is great because they so often are on the cutting edge in medical advancements. The downside is that the attending physician is rarely the one who presents information, decisions, and treatment plans. When they ask the resident or the nurse a question, the answer they receive is “we are not sure about that”. Here is the email I sent to her:
- get the info from the attending physician
- have the attending stop by with the info
- have the attending call me.
Very often the people taking orders from the attending just need the family to push them hard enough to justify contacting the attending. They are intimidated by the attending also! There is no reason to accept “we’re not sure about that” answers.