Last Question: How can I be supportive to someone who has a disabled child? I feel out of place a lot around them.

It's not easy I'm sure to see someone devote their life so wholehearted to their child.  And it certainly is not easy to understand the words they use everyday to describe their child or talk about their child.

I did have a support system from my family as they faced everything with me.  But you will probably find the parent being to pull back as they probably cannot attend regular functions like movies, and dinner on a regular basis or you may feel they pull back because they feel you will or cannot understand what they are going through.

My suggestion would be continue to provide support. Even asking daily how their child is means a lot to someone experiencing everything  with their child.  I can tell you from personal experience having someone who has never met my son in person asked daily about him and it felt great knowing someone out there cared, even just a tiny bit.

And also be there for them. Spend time at their house, ask about any new milestones happening, ask them how they are and offer to help like going to store or making something or taking the effort to understand their world can go through a whole lot but importantly mention if it becomes too much for you to handle and you need to back away.  Just knowing that their new life and child isn't the cause of the sudden diminished contact with you will help them feel okay if you need to step away.

Question 3: Is or was it difficult to understand all that was happen to Hunter or any child's medical history?

It can be difficult to understand. Throughout your education in school you rarely hear the words, Cerebral Palsy, Seizures, Feeding tube, etc.  You are certainly taught the basics of the understanding I'm sure in school when you take health class or science.

Becoming into the world of disabled, it's a whole new world to experience.  You are diving into a hole where words like CCs, and valium become an everyday vocabulary and there are a lot of books out there to help you understand and even your child's doctor can help you out as well.

Question 2: Are you angry or depressed over the loss?

I was never truly angry over the loss. The Doctors at Johns Hopkins did do their best efforts despite the sudden outcome.  Do I fault them in the end? No.  As some may not understand why I feel the way I do, I believe that holding grudges to someone who did their best isn't the answer.  Am I angry over the outcome in the end? Of course. No one would want to have their child go before them.

I am still sadden over my loss but as time has gone by it has become slightly easier to go about life.  I often tell myself that if I gave up when Hunter didn't then I wasn't being fair to him at all when he struggled the most and still smiled.  Some things are difficult to do, like watch videos of him.  I have been able to look at pictures without breaking down but videos draw the line.

But I take these emotions daily. Some days I do get angry and other times get depressed but it never last long as I remember his smile.

Question 1: Donations were made in Hunter's name to Kennedy Krieger, do you have access to that money, if so, what would you do with it?

I have been asked this question a few times.  A donation made is not accessible to me or my family.  It is made into support of Kennedy and their efforts of research or charity.  If there would be an accessibility to the funds made then I would like to open an resource-type funding and research to aid other families in need with children of complex medical needs. While there are tons of resources out there to aid families, perhaps there are too many that we cannot find or have access to.  During Hunter's life things that were mentioned to help financially and support were all over and it is always a matter of getting paperwork, the right people, and the eligibility.  It's a long winding process that often times it becomes more of a hassle gaining the help than it is being in the program.  With all that was dealt with Hunter it has made me realize that I want to help others and help provide Doctors the research and funds needed to help future families out there, as well as support groups for families.  Maybe one day.

What to discuss or be a topic?

Hello friends! I would like to know what you want to know or read about? I will be doing research topics based on health issues related to Hunter or other children but please remember I am not an expert or a Doctor so anything discussed here should also be discussed with your child's doctor. So send in suggestions! 

2 years later

Wow cannot believe its been over two years since my last post. So much has changed although it seems so little. The memories still haunt me to this day, always floating in my mind. I have been asked on a few occasions to at least speak with someone over my grief and I feel that perhaps I feel strong enough to finally open up without completely losing into my emotions. Only time will tell when this will happen but I will keep everyone posted. 

New titles and topics will be coming soon. 

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.

Nail Biting: The 1 year mark is slowly approaching

I apologize for my lack of updating this past couple of weeks. Thanksgiving came and went without any issues and it was a bit relaxing.  Hunter did well to survive through it all himself, but almost refused to allow Mommy to eat but she was able to before he decided he didn't want to be in bed anymore.

Hunter managed to be weaned entirely from Methadone without any major problems.  He had been on methadone on and off for almost a year. The next step is Ativan.

Hunter also had a few follow-up appointments beforehand.  He is healing well despite small issues from his J-tube surgery.  He had an infection around his J-tube site and was placed on medication to help it heal better. Also it was noted that somehow Hunter had developed pressure sores underneath the disc of his temporary tube, but after being placed on antibiotics it showed signs of disappearing.

After returning home from his surgery family noticed a small sore on Hunter's Right ear. This sore has come and gone during each hospitalization, however after this recent stay at Johns Hopkins the sore did not vanish. I made an appointment with his Pediatrician to discuss the sore. We were told to place Hydrocortisone on the sore. Sadly the medication seemed to do very little to heal the infected area.

In early November we met with his regular Doctor for follow-up and his Doctor was impressed with the progress he was making so far.  We went ahead and scheduled to start the weaning process of Ativan.  At this time he is down from 0.5mL to 0.3mL and showing no signs of withdrawal.

We also showed the Doctor the unexplained sore on his Right ear.  They concluded it was a skin infection that started out as a pressure sore and continued to get worse.  They placed Hunter on Clindamycin for 10 days as well as providing us with some special wound care bandages to keep his ear covered.  The sore is still there but it definitely looks much better than it was before.

Hunter has several remaining followup appointments coming up before we take a break to avoid any possible winter weather storms.  He is due to meet with his Nutritionist to follow-up on his current feeding schedules. He is also due to see his ENT doctor to discuss about any reason why he had bleeding problems from his Trach (this issue has stopped and has showed no more blood) as well as a more closer look at his right ear. He also gets his J-tube button placed in on December 13.

However there is one date that has some of us biting nails, mainly me perhaps and forbidding the word "hospital" in this household.

While talking with family about the upcoming end of the year I began to realize that in 12 short days marks the 1 year since Hunter became severely sick.  I never realized how much time has truly passed until I knew the date of tomorrow.  Time felt slow and nerve-wracking for my family and I as we hung back and watched my son who was healthy in my terms become a former self of himself that he once was.  Moments became hours, hours became days, days became months and months passed slow.  To this day we will probably will never know what truly made him sick or the cause but in the end he fought through it all and proved to many that despite many downfalls or people's lost of hope, Hunter cane pull it through.

There are many days I'd like to forget this past year so Hunter and I decided that the next year we'll somewhat erase his horrible road of 2010 and rejoice in 2011 with many exciting events such as returning to school and continuing to thrive better and continue the road to rid of all the horrible incidents that occurred. Removal of medications, one goal to remove his Trach and become the child he once was before taking that dive into the pits of hell.  Also next year we hope to take a long needed vacation together as a family to Williamsburg, VA.

Here's to a new year and hopes of a better future.

Getting Organized and Relieving Stress: Sharing Medical Information on your Child

Ever felt overwhelmed when you take your child to the Doctor whether it for a check-up, follow-up or new Doctor and see and hear the million-and-one questions the Doctor asks?  I felt like that many times, especially during Hunter's severe illness this past year.  I sat there listening to the Doctors bring up one question after another about why we were there, what bought us there, was this normal for your child, etc; etc.   It began to get even more frustrating when it came to several different doctors who were assigned to Hunter's case and even more questions came about.

So I decided to do something that I felt would help myself with not only being able to not constantly having to repeat myself about Hunter's care, but also make it easier for new doctors and nurses to understand Hunter better.

I sat down and wrote up a Information Packet.  This packet included EVERYTHING and ANYTHING I could think of about Hunter.

The cover was just a simple thing to do to add his name and mine to show the Doctors and Nurses what this was, this is optional to have. The Table of Contents is also optional to have but I made it as I was trying to learn more ways with Microsoft Word but this will give you an idea of the things that I added about Hunter.  

The idea with the order is to simply place information that you feel is the most important in the packet and also not to go into complete detail. Doctors and Nurses and any other Medical personnel really don't have time to read deep details.  With each section simply write up a brief summary if needed or add dates. 

I started the packet with my information including address, phone numbers, emergency contacts and also listed Hunter's case manager.I also listed some of Hunter's history and often times I get asked about his birth history so I simply copied a section from a packet that I had to fill for a new Doctor appointment.  They usually ask when and where, the age of the mother, how many pregnancies, and the weight and height of the child for birth history.  If you are unsure of all that information, then you don't need to add it to the packet. 

One of the big things to definitely have and this will help you for remembering is ALL the hospitalizations your child was in for. I had been asked where and when and why for any time he was in the hospital and if you have a child like mine the list gets long.  It also helps but not needed to state the reasons why the child went into the hospital for.  In the end you'll be surprised like me to see that there is a lot. (Tip: Add dates of hospitalizations even if it was for one day. There was a reason for going to the ER and some Doctors find it helpful)

Surgeries and Procedures is another big list to have included in the packet. Ever surgery is listed with what and the date.  These are also important to have because many times in a shuffle between Doctors the dates often times get written wrong.  Also listing procedures that your child may have done also helps Doctors. Things like Sleep Studies, and EEGs.  If you don't know the dates to those, no problem, just stating your child has had them done helps to know that he/she is no stranger to different tests needing to be done.

Some sections may be easier to write in a small summaries.  Like the section below about Hunter's Feeding history.

Include as much as you can in simple form but giving as much detail as you can, including current information and past information about that section . Each section can be what you feel the Doctors and other people should know.  Other ideas could be, Blood Pressure/Heart (if your child has problems in those areas), Feedings, Comfort, Likes/Dislikes, Seizures, etc. Remember it's anything you feel your child's Doctor needs to know. 

For the next areas I suggest you also include all Doctors that your child sees and where and what for.  

I recommend that you also include Locations.  Locations is a listing of your child's Pediatrician's office with address, phone numbers, and fax number.  Also list any hospitals your child has stayed at or visited, Nursing Agency office, Medical supplier (also include some of the items they provide), and child's case manager's name and office number.  For all these locations provide addresses, phone numbers and fax numbers.  If there is also a main person to contact, include their names as well. 

The last thing you should definitely add is your child's medications.  I recommend that you include one page that lists all your child's medications. Include the generic name (with the brand in parenthesis), the dose amount given, the strength of the medication, and the frequency given.  

I also suggest for the strength of the medications to be included because often times Doctors rely on how much the strength is to figure any changes to be made.  You can find the strength written near the end of the bottle where the medication name is written and next to it you will see "2mg/ ml" or "1mg/ 3ml"  That is the strength of the medications.  This layout is the main layout to include in the packet, however you should make a separate listing for medication schedule for home.

This list is also good to have separate so it can be changed if the medication schedule changes and to also give to the Doctors so they know when your child is suppose to receive their medications.  

Finally while still on the medication topic also include any information such as Medication Weaning, or Allergies to any medications and give an summary of signs to look for. In Hunter's case he suffers from medication weaning problems, so its included. Also I've added past medicines Hunter has been given. It's important to ask the Doctor for ALL and ANY medications given to your child. Ask them to spell it or print information about it and add it to a list. If there are medications that your child had problems with, mark them with a star and include a note at the bottom about them.  

This packet should also be updated every 6 months or write up a separate summary of recent events that occurred since last seeing the Doctor you've met with. And this packet is good to give to EVERY Doctor, Nurse and even Teachers so they can learn more about your child's medical issues.  

If you have any questions, please comment or e-mail me. 

Photos of Hunter: Shifting through Years of memories

I uploaded and added pictures of Hunter through the years, starting with his earlier years. There are many more to add so keep checking back.

To find his pictures look at the side bar on your left, scroll down until you see "Hunter's photos".

J-Tube

Hunter is still healing from his J-tube surgery pretty well however has developed a infection around the flat disk of the tube. He is currently on antibiotics to help clear up the issues.   In 6 weeks we return to the hospital to get the button placed in so he will have 2 separate ports, one for medications and one for feed.  


Below is a picture of a feeding button he use to have. It's a G-J tube button.  The top port is the J-tube where he was receiving his food.  And the side port is the G-tube where he gets his medications. 

  (This picture does not belong to Hunter)

The problem with this particular tubing is it requires careful care.  If dislodged, to replace it requires a trip to a specialized hospital, namely Johns Hopkins to have it placed back in.  However a GI doctor, like Hunter's decided that the better option was to have a separate ports to prevent the emergency need as well as an easy flow of his formula, which he is currently on Elecare, an amino-acid-based, hypoallergenic formula that is specifically designed for infants and children with special feeding issues.  Elecare formula comes in powdered form so mixing it can cause a blockage in the lining of the tubing. 

So now we are preparing ourselves for two ports.  

The J-tube is the tubing that is on the lower right side and the G-tube is the upper left. 

The buttons are called, Mic-Key Buttons. They are a small button-sized ports. See the pictures below.

They are easy to care for and easy for removal and if it comes out it takes simple steps to replace it.

Another decision for a better life: J-Tube

On Friday Oct. 15 Hunter underwent another surgery.  This time for a J-tube placement separate from his G-tube (he had a combo one before called a GJ-tube).  He is currently home and doing good so far.

  The reasoning behind the separate tubes is because the combine one causes many difficulties and problems that parents find it hard to maintain for their child.  If the tube breaks or stops working it's not an easy thing to replace yourself, you'll have to take your child to the ER and find a hospital or doctor that specializes in GJ-tube placements and not a lot of regular hospital can do that and often times you find yourself having to be transported to a Children's hospital or specialized hospital to have it replaced.

The reason for this is because the tubing isn't simple to place. A small tubing is threaded through the intestine.  The tubing his tiny and often times formula could not be mixed enough and could get the tubing clogged or the tubing could recoil back into the stomach without any reason.  Some Doctors find this to be a pain to deal with because of so many particular problems it causes.  So some Doctors suggest a J-tube separate from the G-tube and is positioned just below the G-tube button and the device is small like a G-tube button which parents can change or if it comes out they can replace without any need of a trip to the hospital unless needed to.

So that is what Hunter went for, a separate button for feeding.  At this time he has a temporary setting in now (pictures coming soon) and in a few weeks it will be replaced with a button.  He is still a bit uncomfortable and find it difficult to sit in his chair (it uncomfortable anyways.) and he does bare a new scar around his belly button but the Surgeon was able to go into old scars mostly for the procedure to minimize pain and to prevent any new scars needed.  He spent from Friday until Wednesday afternoon at Johns Hopkins. The staff was great with Hunter.

Hopefully we can get through the remaining healing process without anymore issues.

The Complex Road: The long months of an endless winter

This entry talks about the recent hospitalization that Hunter went through from December to August.  This is also the information I typed up that I give to all of Hunter's Doctors to give them an understanding of what occurred to the best of my knowledge.

Overview:

• ·         Vomited black stuff
• ·         constant pneumonia diagnoses 
• ·         Pancreatic inflammation and C-Def
• ·         Neurological storming
• ·         GJ Tube and other feeding issues
• ·         Nissen Repair
• ·         Blood Pressure and Cardiac arrest
• ·         Tracheotomy Placement

On December 11, Hunter woke up and vomited black colored emesis.  Throughout the morning he seemed sluggish.  After getting a bath and cleaned up he continued to spit up the black colored substance.  I placed a call to his Nutritionist from Kennedy Krieger who stated that it was not a normal thing and to take him to the Emergency room.  I took him to Anne Arundel Medical Center in Annapolis (AAMC).  Upon arrival he did not vomit again, but did not test the sample I gave to them.  He had a fever of 102.0F and his oxygen saturation was in the mid 80’s.  He was given a chest X-ray and the ER doctor said it looked fine.  They put him on oxygen and took blood and urine samples for lab work, but there were no immediate results.  Since he was going to be transported Children’s National Medical Center (CNMC) in Washington D.C. because the AAMC physicians were concerned about a possible malfunction of Hunter’s VP shunt and they were not equipped to deal with shunt problems.  All lab results were to be forwarded to CNMC.

He arrived at the CNMC ER where they reviewed the AAMC chest x-ray and they determined he had pneumonia, although AAMC’s doctors initial interpretation did not diagnose Pneumonia or any other signs of illness.  CNMC’s evaluation resulted in a diagnosis of pneumonia in the in Hunter’s left lung.  Hunter was still on oxygen and still having a fever.  He was sent to the CNMC Respiratory floor.  The next day Hunter was a bit agitated and fussy, but showed no other signs of distress.  He was on minimal level (0.5l) of oxygen throughout the night and still running fevers ranging from 100 – 103.0.

During the evening of December 13, 2009, Hunter seemed more agitated than normal.  After getting him calmed him down, I noticed that he had a blank stare and his eyes were fixed and downcast.  I was unable to get him to direct his attention elsewhere.  He was also jerking his right arm in a consistent flailing motion and I was unable to stop him by holding the arm still, as we normally would be able to do if the flailing was a result of his cerebral palsy.  I finally called the charge nurse and ward doctor who suspected Hunter was having a seizure, so they administered Ativan to counteract the suspected seizure.  This behavior lasted between 5 – 10 minutes from the time I realized what was going on until I called doctors.  I don’ recall exactly how long the behavior lasted after receiving the Ativan, believe it was about 10 minutes.  Shortly after this he fell asleep.  He was placed on Keppra.

On Monday December 14, after returning to the hospital after going home, Hunter was not in his room.   His nurse had stated he spiked a fever of 105.4 F and had another possible seizure. He was taken down to the PICU.  During his stay there he was agitated and could not relax.  Overnight he continued to have struggles. 

On Tuesday December 15, due to his continue agitation Hunter was beginning to struggle to breathe and was placed on a BiPAP; however, this did not correct the erratic and forced breathing.  He was then placed on a ventilator to stabilize his breathing.   He was also placed on an EEG machine to monitor any seizure activity.  Throughout the night, he was sedated.  The results showed no major seizure activity. 

Hunter remained on the ventilator until December 20, when they first attempted to remove him from the ventilator tube.  After removal, Hunter’s oxygen saturation levels could not be sustained at a desirable level so he was placed back on the ventilator.  Another attempt was made a couple of days later and he remained off the ventilator and placed on a CPAP.  On December 25, Hunter was placed on the high flow nasal cannula, and continued to show signs of improvement.  Also during his stay in the PICU we learned he had contracted C-Def and his pancreas was inflamed.   He was placed on several medications; however there was no explanation about how his pancreas got infected.  The cause of the C-Def could have been from constant anti-bacteria medications and/or the IV fluids of TPN and Lipids he was receiving. 

The C-Def cleared up a bit, but his pancreas was still remained inflamed.  He was transported back to the respiratory floor mid-January.  Shortly thereafter Hunter began to have problems keeping his feeds down without vomiting.  It was later learned that his Nissen Fundoplication had completely failed and was no longer helping prevent vomiting his food. (He had the first surgery done at 8mos old in February 2005)  He was placed on a temporary set-up of a J-tube which was a G-tube with a NG tube functioning as a J-tube. While on this jerry-rigged, GJ tube Hunter began throwing up greenish yellow fluids.  The G-tube part of this set-up was kept opened to allow these fluids to drain.  During this time he continued to be on medication for his pancreas and he was noted to be having fevers and high heart rate.  Several fluid samples were taken; however, the lab work cultures revealed no source for the fever.  They later stated that his periodic high heart rate and fevers were believed to be the result of “autonomic storming.” He was placed on several types of medications to control the storming.  Finally after a few weeks the temporary GJ Tube was falling apart so he was placed on a more permanent tube.  On February 2^nd once the storming abated and the pancreas infection cleared Hunter was sent home

.

Upon returning home Hunter showed signed of having difficulty handling his feedings.  At this time he was Peptimen Junior to help digestion.   Over the course of the next few days, Hunter found it difficult to sleep.  He was also having trouble with passing gas, although his stomach remained empty of gas, his output of bile-like fluids increased in the amount draining from the G-tube.  We would attach a newborn-sized diaper to the tubing to catch the bile and we were changing these diapers 3 -5 times daily.  He was also in constant abdominal discomfort and pain often screaming and crying out, and his belly appeared distended.  We were unable to Hunter down and were forced to hold to ease his discomfort.  He was also not sleeping well at night.  Finally after 4 days of seeing him in pain, I decided to lower the feed rate and place him on Pedialyte.  According to his night nurse he slept soundly.  The next day I increased his feeds slowly and mixed formula and pedialyte together.  Once it reached above 55cc/hr (according to CNMC GI personnel, he was suppose to receive a feed rate of 70cc an hour rate) his discomfort returned.  On the evening of February 10^th we received a return call from Ginny Gebus (I had called her a day before out of concern of Hunter’s problems), Hunter’s nutritionist, and she then told us to take him to the ER and have the GJ tube placement checked.  Again we took him to AAMC who took abdominal X-rays, but could not determine if there was a problem with the placement of the GJ tube and suggested that he return to CNMC for a more accurate and complete examination.  The next day in the midst of the 2010 blizzare he was transported back to CNMC. 

The CNMC GI surgeons determined that the GJ tubes were correctly placed, but because of his difficulties decided to repair Hunter’s Nissen.  However, early in this hospitilazation, Hunter began to experience constant low grade fevers.  Finally, on February 22^nd Hunter underwent his Nissen repair surgery.  The surgery went well without any issues.  Suddenly, the next day in the evening around after 5pm, Hunter suddenly began having difficulty keeping his 02 stats above 90%.  After repeated attempts to place the pulseox sensor in several locations, it was determined there was no sensor problem and that he was having troubles breathing on his own and with the nasal cannula, so he was transferred back to the PICU, and placed on the High Flow nasal cannula. After the surgery, he again contracted pneumonia once again which, according to the doctors may have developed as a consequence of the surgery.  He remained in the PICU for about a week then was returned to the CNMC 7^th floor, where he had gradual improvement.  He was sent home March 9^th.

Hunter thrived a bit easier at home with sleeping on and off and being around family.   On the morning of March 15^th, Hunter seemed a bit stressed and was having trouble with oxygen saturation, falling into low 90s – upper 80s.  After several breathing treatments (see medication list for Nebulizer meds) Hunter managed to remain above 90% and was comfortable enough that he took his nap by 12pm.  At 10am the same day, he was given his usual scheduled medications.  At 1250, he was given his 12pm medications late.  A few minutes after 1pm Hunter’s pulseox machine was beeping and his oxygen level dropped into the mid-70s, and we were unable to rouse him no matter what we tried and he was beginning to look pale.  We tried everything to wake him but still did not get a response. Grandfather placed a call to 911 while I continued to try to wake Hunter.  I placed the suction tubing his mouth resulting in a 3 second response.  He was taken to Baltimore/Washington Medical Center in Glen Burnie for assessment.  He continued to have breathing difficulties, but he was mostly awake and better than before, he was on oxygen through a face mask and he was evacuated back to CNMC.  Once again, he was placed on the high flow nasal cannula.  He was again diagnosed with pneumonia.  Once again Hunter began to thrive and get well. We met with the CNMC GI team and Pulmonary to discuss the current issues.  He was still having constant loose stools and had been since December. The GI doctors ran tests, including a saliva gram test.  It showed that Hunter was having troubles with his saliva and, although the test wasn’t entirely conclusive, it showed he was again having small amounts of reflux once more; however, he was not throwing up.  We learned that his Nissen is possibly is failing.  He continued to do well despite the minor refluxing and continued to show no signs of vomiting.   We were later asked to discuss the possibility of him going to Hospital for Sick Children, but decided against it at that time.  I wanted to get him home and try to get him well by also keeping him on better anti-reflux medication and trying out a the new formula, Elecare, which had been prescribed by GI.  Before discharge he seemed to do well on the new formula and medication and was also thriving well for a week or more on room air.  He was discharged once again on April 1^st.

At home, throughout the evening and the next day Hunter was doing well except for the sudden behavior of increased stiffening and arching more than normal and excessive oral secretions, believed to be saliva only.

 On the night of April 2^nd Hunter became extremely distressed and having his oxygen saturation dropped into the low 90s.  Overnight Hunter continued to have difficulties which continued into the morning of April 3^rd.  Hunter once again was having difficulties with his oxygen saturation dropping into the mid-80s. At first thinking the pulse ox sensor wasn’t working well, I placed a phone call into the company that supplies the machine, but later determined that it was not the machine and once again Hunter needed help since his saturation dropped to a low of 50, so again, 911 was called.  Hunter was not entirely as unresponsive as he was back on March 15 and he was coughing a bit, but still wouldn’t wake up entirely.  Upon arrival at B/W hospital, again Hunter was in complete distress and was struggling to breathe.  Doctors intubated him and called for transportation back to CNMC.   Hunter was once again diagnosed with aspirate pneumonia. He was removed from the ventilator around April 8^th and placed back on the GJ tube, after having several episodes of spitting up a lot of secretions.  He tolerated feeds through the G-tube of the GJ tube but again was spitting up and often the smell of formula and medication was found so they switched his feeds entirely to be given through his J-tube which he was tolerating quite well.   Hunter’s feeds were started out slow, however once the feed rate reached above 60cc Hunter showed signs of discomfort, the same signs he endured at home back in February.  I asked the Doctor to lower his rate back down to mid 50s and Hunter showed no signs of distress. Hunter began to thrive well off of the oxygen and managed to be on room air for about a good two days.  Also a week before May, Hunter started to develop a lot of low-grade fevers.  Doctors ran tests from blood to stool samples and all results were coming back negative.  Occasionally he had an autonomic storm which never lasted long at all.  Finally after 24 hours without a fever, although low grade in the low 38sC Doctors felt he was well enough to go to HSC, a decision that was made because needed a lot of therapy to recover from his ordeals and continued to be monitor with his feeds and oxygen needs.  

The first night at HSC, Hunter was restless and could not sleep but showed no signs of agitation; however he seemed to show signs of breathing difficulties and was placed on oxygen at 1liter.  The next day Hunter slept off and on, occasionally getting upset.  Overnight he developed a fever and experience possible storming episode. 

Sunday, May 9^th in the morning the fevers and breathing difficulties continued and HSC transported Hunter to CNMC.  After he was transported to CNMC PICU, I was notified that Hunter was coding – blood pressure dropping and he went into cardiac arrest.  This occurred twice while they were getting him situated in the PICU.   He was ventilated on the high frequency ventilator and EKGs were run twice a day for four days.  Due to his cardiac arrest and continued concern over possible heart damage, he was placed on a 24 hr Holter EKG monitor, which showed some cardiac weakness and some erratic enervation of the heart due to the events that occurred, however, there is still no word on the cause.  Hunter was placed on a regular ventilator on May 12.  Neurology and Immunology had stated they will run tests to determine what is causing Hunter’s constant hospitalizations.   On May 15, Hunter’s breathing tube came out and he was placed on a high flow nasal cannula.   After an attempt to stop Dopamine, Hunter’s blood pressure dropped and he was continued on the Dopamine.  During the night of 15/16 May, Hunter experienced another Autonomic Storm and had to be given Ativan to control it.

 During his stay in the PICU Hunter was weaned from the high flow cannula and was placed on a regular cannula receiving 3 liters of oxygen.  He was stable enough to return to the Resp. Care Unit at Children’s but on May 22^nd Hunter took another turn for the worst.  His oxygen saturations dropped to the 70’s.  His blood pressure also dropped extremely low.  The attending had stated that Hunter needed to be re-ventilated.  So he was placed back on the breathing tube.  His blood pressure was still having difficulties and he was maxed out on 2 of the medications given for blood pressure so they also continued to give Saline boluses to help stabilize it.  Finally several hours later he was stable and blood pressure was doing better. 

Discussions were also made about placing in a Trach to help him stay comfortable for his breathing.  He had the Trach placed on June 1^st, 2010.  Hunter spent time recovering from his surgery without any major issues; however was tested positive for MRSA.  Doctors continued to monitor him and were deciding Hunter should either be prepared for home or Hospital for Sick Children.  The decision for Hunter’s return for home was a difficult one to decline due to the numerous health issues and due to the cardiac issues faced from Hospital from Sick Children we were left with an option of where to place Hunter to receive the therapy and continuing managements of his medications and figure out what his sickness is and what caused him to be so sick the following months. 

After asking for a second opinion Hunter was sent to Kennedy Krieger Pediatric Rehabilitation Unit at Kennedy Krieger in Baltimore.  Hunter was transferred on June 23^rd, 2010.  Upon arrival many specialists and his former Doctors assessed Hunter’s issues and raised the question if Hunter truly had Dysautonomia.  Several Doctors also questioned the amount of medications Hunter was currently taking and decided one of the first steps was to remove unnecessary medications that were not helping Hunter.  Hunter was also evaluated for Therapy services of Physical and Occupational therapy to help strengthen Hunter’s weakened body state after being bedridden for the numerous months.  Throughout his stay at Kennedy Krieger Hunter showed vast improvement compared to his time at Children’s medical center.   Although tired easily he showed no signs of his previous medical issues of autonomic storming.  Some of his medications have been discontinued such as Bromocriptine, Propranolol, and Glycopyrrolate.  Doctors will continue to wean Methadone, Ativan, and Clonidine.  

A recently sleep study was performed showing that Hunter had moments of destaturation and will be required to remain on the ventilator throughout the day until a repeat study will be performed.

Hunter is officially well enough to return home and discharged Tuesday August 24, 2010. He will continue to be followed up with Kennedy Krieger and John Hopkins Doctors.  He will be receiving In-home therapy as well as homeschooling since he is not well enough to return to school.  

Deep Thoughts of a Mother of a Complex child

This entry was written a few years ago. At the urging of a friend trying to understand my situation I wrote this to give some idea of what goes through my mind every day aside from the daily care I provide my son.  This entry is not written for "woe is me" or to cause any more guilt on my part but simply to give you a glimpse into my mind when I think about those first years of my child's life.

This entry will probably one of the most personal yet confusing ones to ever write. There have been many times I've thought over and over in my head whether to write this entry now but I believe it has come to the point that I have to now. I would be continuing to act like things are okay and that I will make it through but in reality I feel like I'm lying constantly to myself. 

A lot of people say they understand but honestly you don't. I don't know if I even do. I'm always the one that says I do not live in regret because I know there is nothing I could do about what has happened but I do, every day of my life. I've always wondered how my life would be if I did this or that or what it would be like if this didn't happen or if it was even worth it ever happening. 
I love my son with everything inside. From the times that the thoughts of being pregnant ran through my head, even to the day I officially found out I knew my life would change forever but what I didn't count on was the realization that my worst fears to come true; the fear of a pregnancy gone wrong. To this day I've continued to think to myself what I have done wrong to have had this happen and yet continue to watch others go on with theirs. Many tell me that it's God's will that chooses Mothers to raise Special children, to have those that will need special caring. Well all in all that is a load of crap. You want to believe in a God that chooses "Special people" to go through with the endless pain, the fear and constant worry if their child would make it through their first night, that isn't a chosen of God's will; it's pathetic for anyone to think that. No one wishes this for their child at all and there is no chosen of "Special People" to endure this endless battle of a normal life for themselves and their child. 

I sit and see every day of every moment of my Son's development delay more and more. And everyday more and more fear goes to mind that he will never once be normal, I will never once have a normal family. The dreams that I hoped for will never happen. Not his fault at all but in a sense is mine. I know there is nothing I can do to help him from delaying more and more and I know I play a big part in it.
You see I've always felt he could learn little by little on his own. Some he has, some that I know I need to help with. But I never erase the feelings that I feel deep down inside me, which I have for a very long time.
Let's see if I can help some people get the idea of what I really am going through. Imagine the day of your pregnancy being truly confirmed your thoughts of a run around Toddler, a mischievous 2 yr, a know-it-all 3 yr, etc being in your life, the hardships of the constant waking up in the middle of the night after a endless cry of needing a bottle feed or diaper change, but in the end, it all changes. Something happens and those once made dreams, fade there's a problem and you need the hospital. You are told that you can placenta previa and you need to remain in bed. You beg your Doctor to get up some. The days go by, you feel better by the second day but then that night, later that night, you have contractions and the next morning the bleeding returns, you are being wheeled away to an emergency C-section. Suddenly you find yourself waking from a deep anesthetic sleep, never hearing a baby cry in the room with you, waking up with a Nurse beside you telling you what happened and where your child really is. But at that point, at least you are told he is alive, and yet your body just wants to sleep. After waking up and truly finding out what has happened, you realize what has happened and thought run through your mind of how this could have been prevented. You want to see your child but you cannot, only family members can, you can only see by picture. Next thing you know someone is coming in to tell you about a place that you hoped never to venture anytime soon.

Your first night passes, all you can do is call to see how your child is doing. Now it’s time to get up and move, after all you've had surgery to remove your child, not your choice given delivery and hearing your child cry. Nerves set in, you wonder what is going on, who is with your child, is he sleeping - awake - doing anything at all?  Is the Nurse handling him with care, does he hurt, will he remember everything from this day forth? Finally the next day, you can see him. You are a bit stronger and can move in a wheelchair. 
You are now downstairs, a Nurse explains that hands are to be washed and gowns to be worn. You are wheeled closer and closer to your baby's little home - a plastic stimulation of a place that he could not live in - your womb. He is fragile, weak and so helpless that you continue to blame yourself for not providing that stable care he so desperately needed and yet others a providing that. There is nothing you can do but sit and look at him. 
The third day comes, your emotions are building but you refuse to let them go for your own sake and the sake that you can be strong for your baby. Visitors come by, each want to see him. The day goes good, your baby is still critical but stable until one moment in time, it all changes. A Doctor comes up stairs to share some news that take you farther down, like you cannot climb up. Your baby had a seizure they tell you, not sure if he will survive. All you can do is hope and pray that he will. By this point you've released all the emotions you have held in for 3 days, afraid you cannot stop, afraid that it will be all you can do. But remember you aren't alone, family members are aside you and most of all, your baby's father, aiding comfort more than your own Mother or sister can provide at this point. Later that night, he's stable, holding on. There has been some damage of course and through the entire time you hear negativity of your child's future, no one has supported any positive thoughts at this point. 

The next day, he remains stable but the result of the seizure continues to build up slowly. More visitors come by and another downfall occurs. Your baby's lungs are collapsing, he needs a medical help to keep it from getting worse. In some mix of this you kind of feel you sense his pain. Finally the day comes that you have to leave the hospital, leave your baby behind.

Throughout the next 9 months, your baby will remain in the hospitals enduring everything from countless number of surgeries, to medical opinions, meetings, 1 step forward, and 2 steps back. Your parental instincts are limited.

Finally after all that, you are finally able to bring your child home but he is still needs medical help of a Home Health Nurse, monitors, machines, and a G-tube, therapists, etc. 

Slowly, you lose the monitors and the O2, he's getting better than he was at the hospital but developmentally, he is still behind. Soon more and more problems creep up. Medical bills that should have been taken care of with your medical provider, a Ped Doc that you feel is not content to caring for a former preemie, and endless Doctor trips for your child, you feel it would never end. 

The year passes; your child is now 2. He survived through the Flu, Pink Eye, Diaherria, Sniffles, and Fevers. Yet with all this there have not been any major hospitalizations through it all. 

Now today, you sit in a quiet room re-thinking and praying endlessly that your child will be alright. He'll start school soon, but he still is delayed. Now your friends and other family members are having babies, they are all having no problems but yet you are alone. Your friends are not around, for the past yr you are struggling with your relationship with your baby's father, you cannot work, you own nothing to your name anymore, you fear for your future. What will you do?

It is a lot but I hope it will give some people an idea of what I am going through. Although this isn't all that I am going through, there is more but I am getting tired of typing.