Hospitals: What to do during a long term stay?

The year 2010 will forever be one of the most difficult years that was endured.  It was also the longest, never-ending tortured time for Hunter.  In December 2009 Hunter was hospitalized and it began a series of up and downs with no end in sight. Even to this day our biggest questions never got answered and may never will be.

But it also became that being in hospitals gave us a second home, a home we never wanted but were at constantly.  Some people never see the inside of a hospital for more than a week or two but for children like Hunter and parents like myself we see them constantly.  The days turn into weeks, the weeks turn into months and eventually those months can go by for a year or more.

Being in a hospital long term is vastly overwhelming especially if you are there more times than you can count and answers to your child's sudden sickness constantly go unanswered. Soon you find yourself knowing the map of the hospital, the schedules of the Cafe and Gift shops, the nearest food places and stores, the parking attendants, names of the personnel, names of Doctors and their professions, and other parents.

It does become a whole new world for someone who doesn't know what to expect.  For myself it became second nature.

So here are some of my tips to endure long periods of hospital stays --

1. Buy your own food, and make it non-perishable.
 Some hospitals have fridges and freezers to store food that was bought instead of constantly buying from the Cafe, however those spaces are limited and granted there are a lot of people that stay over night or long periods of time with a patient.   Most hospitals are now adopting single rooms with more space.  Buy foods that are easy pop-off can tops (ones that don't require a can-opener), puddings, snack bars or cakes, cereals,  boxed milk, snacked tuna cans, juice, water, etc.   Also packing a small bowl and utensils that you can wash out in the sink helps.  Some hospitals also have microwaves in the Cafe or on the floor for families to use.  Always ask the Nurses what foods can or cannot be allowed in the room.  If your child does not have a single room you can still have foods in the room as long as it is okay with the Nurses.

2. Get to know your child's nurses
Some people refuse to get to know your child's nurse and often times feel that despite you being there they aren't good enough to really know your child or help. News flash -- they do, with your help of course.   Talk to them, explain to them what it is like at home for your child to make it comfortable during their stay in the hospital. Also getting to know them helps them care for your child while you are away for a brief time and your child can gain comfort knowing that what he/she needs will be met similar to how you do it.  Also it gives you a common ground to have some one on your side when you feel something is wrong, they can help you figure it out and make sure it is met immediately.  A lot of the nurses Hunter has had in the hospital became his best friends and they fell in love with him in return.  It shows their compassion and dedication as nurses that they care for their patients wholeheartedly.

3. Listen in to the Doctors rounds
I'm certain that some parents wait till the Doctor comes to you about the on-goings of the care of your child. I too did the same until I learned that attending a Doctors round when they are outside your child's door gives you a front seat to learn any new information overnight, during the day or future plans.  This is also the best time to catch them to ask questions and make certain that they come back to talk to you.  And if they don't come back at a timely matter (give them at least another 3 hours after meeting with you during rounds -- they need to finish everyone else) and constantly bug the nurse to ask for them.  There were times where I let it slide that a Doctor didn't come back to speak with me about Hunter that I constantly demanded every hour for the Doctor. They are busy yes but they can take time out to keep you in the loop about your child.

4. Take Notes
While staying at the hospital constantly take notes!  Every medication given, every procedure done, EVERYTHING.  Often times dates get mixed up by the constant changing of Doctors and more times than none the Doctors never read the medical files and rely on you to answer why you are there.  Take note of every Doctor that visits your child, even if you never see them again.  Ask for Business cards.  Note any changes to your child behavior, appetite, etc. Never be afraid to ask them to repeat themselves about something or spell out a word.


5. Entertainment
Hospitals now days are coming equipped with Wi-Fi and cable. Sitting in hospital rooms day by day alone can drive a person to madness especially awaiting for your child to get well. Ask the Service Coordinator or Patient Services or Social Worker about the TV and Wi-Fi.  Also take books with you or a small dvd player. Even bring a few toys for your child but be sure to place name on all of them and if you are going to leave the room for more than several hours, either hide your items or place them in your car to prevent it being stolen.

6. Comfort
Comfort for your child and yourself is a big must if a long term stay occurs.  While there isn't much  you can do to maintain pain for your child and feel helpless, knowing your child and what helps elevate some of the pain helps a long way.  While Hunter was hospitalized the only thing I knew that could keep him comfortable was to lay in the bed with him. Some hospitals don't allow the parent to share the bed but if they do -- take the opportunity to do so.  It was the only way for Hunter and I to be relaxed and get sleep.  If able see if there is a recliner chair and hold your child.  Hours upon hours when not in bed and needing a break from the bed holding him was the best thing I ever did for him.  It gave me a peace of mind throughout this whole process that knowing I have that one on one time with him made the stay bearable.

7.SPEAK UP AND LOUD!
I couldn't stress those words anymore profound than I did here because one of the biggest lessons I learned was not speaking up about concerns, questions, suggestions, etc caused more stress on my child and myself than realizing that staying in a hospital did.  Speak up to the Doctor, only you truly know what goes on with your child. You see them everyday, you hear them everyday.  Being at home and in the hospital has very little difference.   You know what hurts them, what they can tolerate, what you might think will help.   During his stay Hunter endured many bouts of medications, some helped, some didn't.  Often times some of those medications were discontinued but I learned through those years that Hunter had a VERY low tolerance to changes to his body, especially a stop and go of many medications.  One thing I stressed and learned to express was the process of weaning medications.  Hunter suffered withdrawals very easily and weaning large amounts at a time didn't do well for him.  I even got into an argument with a Doctor over one of the said medications that I knew was causing him distress.  It took two days but I finally made my plead and won.  After that the Doctor and I rarely butted heads.

8. When to decide when enough is enough
After a few months or so, time begins to move slowly and yet no answers are made, questions are continually asked. One mistake I gravely wish I made sooner was not to ask for a Second Opinion.  If you feel your needs are not met and your child is still suffering demand a SECOND OPINION and tell them to find another hospital to help you find answers.  After 6 months of repeats and no end in sight, and due to a friend's urging we finally requested that Hunter be seen by another Doctor at John Hopkins.  After looking into to it and telling Doctors and Social Workers my mind was not going to change, they managed to get Hunter to Kennedy Krieger, a affiliated facility to John Hopkins that specialize in many Specialities for children.  I cannot express how pleased I was when after only 2 months despite the answers did not come that they were able to wean Hunter from most of his medications and help him get his strength back enough to finally come home.

9. Contacting others
Throughout your child's stay it can be exhausting to deal with but also stressful to keep others in contact. Not speaking of family members but Doctors, Social Workers, Nursing care, and school.  While Hunter was hospitalized I often kept in contact with his primary Doctor, his case manager, the nursing agency that provided his nursing needs, and his school.  Keeping them up to date of the progress makes it easier on you and your child to resume into normal life.  It is also important for YOU to keep contact with your child's social worker and nursing agency (if your child has them) because often times information can get mixed up, especially when approaching your child's discharge.  Dates and times can get changed and sometimes no one else is notified of the changes so planning goes into affect and messes everything up.  Don't need to call daily, but bi-weekly or so helps.  You don't need to go into detail, just a need-to-know basis helps.

10. Discharge
Discharging is an anixous moment for you and your child. All your worries from the hospital impact your feelings for your child to come home -- is he well? is there going to be a relapse? what do i do if i have questions?   Take a breather first.  Meeting with the Social worker always helps (although i suffered with bad experiences with them). Meet with the attending Doctor, the doctor that was always in the care of your child. Express your concerns and problems.  Ask for an early discharge if possible. A few days before your child is due to be released ask for the medication scripts so you have time to get the medication needed for your child so you are missing out.  It also helps that if you know what medications your child is going to be on when coming home, call your pharmacy and see if they will have that medication in stock.  Run through every issues and outcome possible so you know what to do in case of an emergency.   Ask who to contact if you have questions. Most hospitals state that once 24 hours is up they are no longer responsible for anything of your child once released but there are some doctors that give you their office numbers for you to call them if you have questions even after a few days.  Anything beyond that you are left with your child's primary doctor to answer questions.  Make sure to have several copies of the discharge summaries, copies of the medications your child is on or has been on. It is best to also confirm any follow-up appointments with Doctors even those that you don't see at the hospital. Especially make an appointment with your child's primary a week after discharge.

Business Cards for Moms

Ever find yourself constantly filling out paperwork with the lines:
Name
Address
Phone Numbers
Child's Name

So many papers with the same swimming words over and over can get to be a pain to constantly fill out. Or ever have moments where you need to write down information for a Doctor, Therapist, or your child's teacher?

It can become overwhelming and quite tiring on top of all the other information you need to provide and keep track of. So here's a suggestion and is easy to make and do with very little money and time.

Make your own Mother Business Card!!!

The card should be simple and only have information that is needed -- Name, Child's Name, Address, Phone Numbers (cell and home), and website (this is optional).

Making several of these to give to people saves the time to have to fill out papers that need this information. It also helps especially if you are meeting new parents who you want to contact you. 

Angel from Above: Always giving

One of the biggest and hardest yet rewarding decisions I had to make concerning Hunter when his time came was whether to donate his organs.  While I never really thought of it at first I realized later it was one of the best decisions I could ever make because Hunter was always so giving and having a part of him helping someone else cherish a life he did so fondly moves me to tears.

The foundation that was used and provided by the hospital was The Living Legacy Foundation (http://www.TheLLF.org)  They provided the upmost careful care and provided us with a lot of choices and eased the decision-making easily.  Below is the letter, although edited about the donation that Hunter was able to provided for the people . . . .

Hunter's gift of his left kidney was transplanted in a 30 year old male, while his right kidney helped a woman in her 40's who has been waiting sometime for a life saving gift.

Hunter's liver helped a little 6 year old girl who had a disease that attacks the liver which caused it to fail.

Hunter's heart valves and right eye cornea were donated to a bank to one day save a person in need.


In the end I decided to have Hunter cremated, which was done so at Donaldson Funeral home here in Maryland.  Everything was easy to plan despite the thoughts and hardship of it all, they too took great care of Hunter for us.   Below is the picture of Hunter's Urn that is forever beside me on my night table.

Hunter's Teddy Bear Block Urn

Look out for entries on the following:

*An Angel from Above: Updates

* Business Cards for Moms

*Hospitals: A Mother's perspective during a child's long term stay

*Home Nursing Care: Get involved

*Special Education: Get involved

*Awareness: Future support for Children with Disabilities in Honor of Hunter

Sad News . . . an Angel who fought battles gains his wings

Hunter James
June 09, 2004 - January 14, 2011

About six and a half years ago on June 9, 2004, we received a new 1 pound 8.8 ounce life in our world and named him Hunter James. He began life with incredible obstacles. Fortunately he was a fighter and, over the next six years he fought through so many challenges to keep going. Hunter went through so much and always seemed to rally through multiple problems. He was a tough little guy with a brave heart and innocent soul. It was these qualities and a smile that melted the hearts of everyone who saw it that touched so many lives and spread love and comfort to all those who knew him.

As time went on, we realized how truly special Hunter was and how deep his relationship with us could be. We will always cherish the precious time we shared with him and, despite the sadness we now feel, we are comforted by the memories of the many wonderful hours we spent with him. Our lives have changed because of Hunter and we are honored to be his family. We were extremely proud to share him with our family and friends for he was such a special little boy. We thank God each day for blessing us with Hunter and his sweetness.

Hunter leaves behind cherished memories in hearts of his Mother, Samantha Fuse; Father, Thomas Defibaugh Jr; his paternal Grandparents, Carol and Thomas Defibaugh; his maternal Grandparents, James and Michelle Copeland and his Great Grandparents, Louis and Helen Fuse; his Aunt Alexandra Mayes and Uncle Justin Mayes, as well as his other extended family members.

We love you Hunter and you will always be with us.

In lieu of flowers we ask that donations be made to The Kennedy Krieger Foundation 707 North Broadway Baltimore, MD 21205 or https://www.support.kennedykrieger.org/donate

Another pot hole in the road

Hunter is currently at John Hopkins hospital.  We aren't 100% certain what is going on at this point.

Friday Hunter was possibly having some seizure activity. He was seen at John Hopkins ER Friday afternoon, all vitals were normal and Hunter was asleep, so we were discharged.  Throughout the remainder of the day Hunter slept.  Around 430am Hunter had awaken and appeared to be in pain and was VERY stiff and arching (for those that don't know Hunter has Cerebral Palsy) and we could not break him from the position he held himself into.  We placed a 911 call and was sent to Baltimore/Washington Medical Center.

Upon arrival Hunter received some medications to help calm him down. Finally after 10am and was given his home medications Hunter fell back asleep.  He was then transferred to John Hopkins where the accessed him and later admitted him for farther testing. 

Today Hunter is a bit better but still not 100% back to himself.  He did give a couple of small smiles but nothing since and he sleeps on and off. 

At this point we are not certain what is going on and more tests will be run on Monday.  Please keep Hunter in your prayers and hope for a good recovery from his ordeal.  I will try to keep everyone posted as soon as I know anymore information.