A Survival Guide to Living in and out of the Hospital

As parents, my husband and I read all the books; the ones that told us exactly what to pack for the hospital and just what to expect when we got there.  Little did we know, our daughter’s birth, would be only the first of many hospital stays, and the last one that would come with a manual on how to make it run smoothly.  Little did we know, we would be writing our own manual as we went along, typing each page into our memories, as we lived out the unexpected set of circumstance, a virtual “How To” on living in and out of the hospital with your child or children which would end up being our case.

When the hospital setting became a revolving-door-home-away-from-home for our family, we realized we had to do our best to make the most of the cards we were dealt.  There was an underlying layer of resentment and bitterness, a grievance for the life we had had, for quite some time.  We knew only in pealing that layer away and releasing it would we be able to embrace the fact that this was our life and we had to learn how to live it.  It was the only way we would be able to adapt to the circumstances and thrive, not only for ourselves, but for our children.  They were not only suffering the physical consequences of their Mitochondrial Disease, but also the emotional effects of a family that was not suffering well.

Like the movie Ground Hogs Day we learned how to do things the right way, for us, after reliving the moment time and time again, changing things as we went, trying each time to make it operate more smoothly than the time before.  In hopes of saving someone else the time and torture of having to learn as we did, I have put together a list of things we have found works for us along the way.

1. Create a Frequent Flyer Packet

If you are like me there is nothing I find more tiring than answering intake questions; in the ambulance, in triage, for the charge nurse, for the med student (when we used to still see them), for the Resident, for the ER Attending, and then repeat again on the floor once you are admitted.  Yes, it is true that most of us parents of complex children could answer those questions in our sleep, and often are asked to, but you shouldn’t have to.    There will probably be plenty of opportunities in life for you to give a speech to someone about your child, but upon entering the Emergency Room or a direct admission you want to be able to focus on the medical concerns that brought you there, and most importantly the needs of your child. 

The best way I have found to avoid the exhausting repetition of your child’s entire medical history is to create a packet that best answers their intake questions.  I had nearly memorized the order of ours by the time I had taken a moment to do this for my own sanity, but you can request a copy of your hospital’s intake worksheet if you want to use it to help format your child’s packet.  Most importantly these are the things I have found from hospital to hospital a packet will be most helpful to contain; primary and secondary diagnosis, medications that are currently being taken (including PRN’s who prescribed them and what they are for), medications that have been trialed and why they are no longer used (this can sometimes help doctors who do not know your child from trying to reinvent the wheel), allergies and reactions (indicating if they are true allergies, intolerances, or neurological reactions), type of diet the child is on and how it is administered (what doctor or nutritionist in charge of their diet if there is one), medical equipment and services, a list of doctors, specialists, and service/DME providers, past hospitalizations and a brief summary of what happened, a summary of your child’s personality type and behavior, seizure types/descriptions if they have any, and other things they should look for or keep in mind (Does your child behave a certain way when they are in pain? Do they have any fears? Is your child sensory defensive or seeking? etc).  Some of these items can be placed into templates, or you can make your own.

We have found it best to keep this as short and sweet as possible.  Our daughter especially has a very long medical history, and we know that they could check out the A-Z encyclopedia that is her life if they were looking for it.  We just need something that we could keep on us, that we could quickly hand to them to help relieve the stress of all involved and keep the focus on our little girl as best as possible.  We have yet to meet a doctor or medical professional who is not just as happy as we are that we made an intake summary packet.  It truly does help keep what is often a stressful and disorganized process a little more put together.  Just be sure to have multiple copies as often times someone will forget to return it, or more than one person will need it at the same time.

Mommies of Miracles' has a great Quick Reference Template that is formatted in a way hospitals and clinics LOVE. Keep one of these up to date and on hand can really save a lot of time.

 

2. Keep a Small Overnight Bag Packed

It took me nearly twenty hospital stays to do this.  I often wonder if others are nearly as stubborn as I am.  I mean really, I knew with just her birth that we would need things packed prior to going to the hospital, but somehow after that it became not ok to be prepared for the hospital.  Somewhere deep down I think I thought I could stop it from happening if I ignored it, but clearly that did not work.  I guess we will just throw the overnight bag in the big pile of “things we need to accept,” that has become this life.

The first thing I would recommend putting in your overnight bag is copies of your Frequent Flyer Packet.  That way it is already good to go, right where you need it, and there is no last minute scrambling to find it.  Now, I should probably follow my own advice, so that I do not find myself hitting “print” every time we are ready to walk out the door.

Next, when you have some down time and are not in the middle of a medical crisis, I know I really just said that, but seriously buy an assortment of travel sized products.  Anything you know you use on a daily basis, that makes you feel good about being you.  You know; deodorant, toothpaste, razors, feminine products, things of that nature, buy an assortment in a small easy to carry size.  You can also purchase empty travel sized bottles to bring samples of your favorite shampoos and lotions if you would rather go that way.  I have gone days to weeks in the hospital with very minimal personal care.  While I was making sure my daughter was sponge bathed, had her hair done, nails painted, and generally felt as good as she could under the circumstances, I was looking and feeling less than human.  It wasn’t necessarily a personal choice I realized I was making, but it is one that is very easily forgotten about when your child needs you at their side and you are not within the comforts of your own home.

Lastly I would keep in your bag some socks and undies, some cash (the hospital seems to be the only place in the world that still requires cash for so many things), and an extra phone charger.  Of course we all have our own list of things we can’t live without or have walked out the door without too many times, but this is the bare bones of mine.

 

3.  Try to Avoid Eating Cafeteria Food

If you are like me eating in the hospital is a huge struggle.  Although our hospital has a parent meal discount plan, eating in the cafeteria meal after meal is not only financially draining, but also extremely unhealthy.  For just a single month long hospital stay of eating in the cafeteria it would have cost us $450 just to feed me.  That was nearly the entire grocery budget for our family of six on our one parent income, there was no way I could afford to continue eating that way.  Between two of our medically fragile children they were averaging at least fifteen to twenty-five admissions a year of varying lengths.  Unfortunately the alternative most days to cafeteria food, was not eating at all.  Our budget was drained, and my body was being seriously abused.

I try to keep nonperishable easily packable foods on hand that can be eaten in a pinch.  That way I can keep some items in the hospital room with me that can be easily prepared.  The best things that I have found are; tuna salad kits, granola bars, instant oatmeal, soup with the easy open tops, and trail mix.  Of course if you know you are going to be there for a long haul I have even gone as far as to have cereal and bread on hand to make sandwiches, but I usually reserve that level of moving in for stays longer than two weeks.

Do not be afraid to ask your hospital for help.  Most hospitals, especially children’s hospitals, have meal vouchers for parents in need.  In our hospital the social work team keeps them on hand.  Ours are good for a free meal under a certain amount of money.  No one will look at you crazy if you need to ask for one, if your hospital has them it is because they understand how difficult it is to financially provide for yourself and family when you have a child that it is ill.  There is no shame in it.

 

4. Utilize Your Hospitals Services

We were going through the motions for a very long time.  It was a constant duck our heads, half in shock, get in and get out way of handling the kid’s hospital stays.  It was not until I realized that we were not really gliding through as smoothly as I thought we were when I had my blinders up, that I realized there had to be an easier way of doing things.  I knew the hospital had great services for our kids, but they were a children’s hospital that is what they were there for.  It never really crossed my mind that they might have a few things that could help us as well.

First things first, don’t wait until your clothes are ready to walk off your body to ask if they have a washer and dryer you can use.  I don’t know why it took us so long to figure this little goody out, but it was amazing once we did. It was a long hospital stay, a really long hospital stay.  My husband had already made multiple trips back and forth with washed and dried outfits for me.  His gas was running low, and so was the amount of times I could wear the same yoga pants.  My daughter, who was quite ill at the time, had just gotten various bodily fluids on me again and I was about to have a very ugly, over tired, cry about it.  Just then it was like an angel came down from the Heavens, really it was just a nurse who was probably sick of smelling the both of us, told me she could get me some detergent and that I could wash our clothes.  It was a Hallelujah moment.  No hospital stay has quite been the same since.

Speaking of the gas my husband was running low on, sometimes the same people who hold the magic meal vouchers can also get you other things like fuel discounts.  Again we would have had no idea until we had to ask for some financial help.  Turns out sometimes asking is the best thing you can do.  I am sure this is not something all or even most hospitals have, but I am just as sure each hospital has their own hidden programs and services that are only a call for help away.

 

5. Ask Your “Village” for Help

Asking for help is a hard thing to do isn’t it? I don’t know why, it just seems like one of the toughest parts for us as parents of fragile kids.  It might be the fact that asking for help is opening for admission that we cannot do it on our own, but there has been nothing over these years like the sting of asking for and accepting help.

The thing is, it really does take a village.  Some just need their villages more than others.  Over the years we have naturally developed quite the amazing village of; family, friends, Church members, neighbors, etc. who have been there to surround and support us.  I know it is not always the case for everyone that they have such a large and supportive community, but whoever your village consists of be sure you accept help when it is offered, and don’t be afraid to ask.

We didn’t always have the support we needed, especially because we so often turned it down and didn’t know what to ask for.  We were so overwhelmed dealing with the day to day and the depths of the life we were being asked to live, we quite honestly didn’t even know where to start when someone would ask how they could help. We were drowning in despair as the stress and misfortune piled up; everything from the financial strains, to our child’s advancing disease were weighing us down. The bitter and angry part of me wanted to shout “does it look like we can be helped,” and maybe that was true to a certain degree, but only because we were so unwilling to accept it.

Here is what I would say to those like us, who need their villages a little more than most, make a mental note of things that people could help with if they asked.  Make an inventory of things you need to get done that are difficult for you given the circumstances.  Start enlisting your village.  Sometimes those family and friends that become quieter when our lives get tougher are more distant because they aren’t sure how to help, or where to start.  Open yourself up to accepting help and see what happens, you might just be pleasantly surprised.

 

Of course everyone’s Survival Guide to Living in and out of the Hospital will be a little different from each other’s.  In time like us, you will find what works for you and what does not, what has to be on your list of must do’s and what can be lived without.  My biggest suggestion would be to sit down in between hospital stays and write a list of things you would want to fix about your last stay before you go back again.  That will give you a pretty good indication of things you need to remedy for yourself and your family before you end up back outside the comforts of your own home.