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.