Planning our Trip

I am getting excited...really excited for Brayden's Make-a-Wish.  We leave in just a few weeks.  This will be such a memorable experience for our family and I cannot wait to see Brayden on the rides!

However...
I need some planning.  I know that Make-a-Wish plans most things and I know that they know what they are doing.  But I like planning.  Any trip we go on, I start gathering all of our gear in a spare room.  In that room are two lists:  things that need to get packed and things to shop for.  Over a period of a couple of weeks, I tweak the lists, finally having every last detail covered and things packed.

Traveling with Brayden requires an entirely separate list.  Brayden's gear and needs require a lot of thinking, planning and packing.  Amazingly, Make-a-Wish tries to coordinate with a medical supply company to provide much of Brayden's supplies there in Orlando (suction machine, cases of glass bottles for his food, case of cans for his food, food bags, IV pole, pulse ox monitor, etc.)

Now that we are flying I start to think of all kinds of questions (please feel free to answer any of them, you well seasoned fliers):

• Can we take a cooler with all of his medications and some of formulas as a carry on?
• Can we take his feeding pump and bag on the plane?  A small travel oxygen tank?  Both as carry ons?
• I assume Brayden sits in his car seat on the plane...which way does it face because he needs it to recline?
• We can wheel his wheelchair right up to the plane to unload him and then they take GOOD care of his wheelchair?  Then return it to use before deboarding the plane?
• With all of the things he needs as carry ons, can any of the rest of us have carry ons?

Then on to the parks.  Rumor is that we receive a three days of passes to anything Disney World, two to Universal Studios and one to Sea World.

• What are the must sees?  The boys are 8, 6 and 3 (almost four yrs old!)
• What are the must dos?  (Character meals, shows, etc.)  I know nothing about Universal Studios.
• Tips on planning out our week?
• Things to by-pass

I know that this is such a special opportunity, that I want to make good use of EVERY moment...we have to sleep right?!  I have grilled a friend who just came back from their Make-a-Wish and she was extremely helpful.  I want to get my lists started and some kind of itinerary or at least some sort of game plan!

I welcome any and all helpful hints!

The pain of not moving

From the start, Brayden has had difficulty being in his own skin.  As a baby, he would thrust his head back and forth, he would arch his back, never finding a comfortable place.

Through physical therapies, supportive seating (like his wheelchair), and just him growing into a little boy, he has been getting better.

He cannot move much on his own.  He can bring his hands to his face and kick his legs, all a huge accomplishment, but that is about it.  Whatever position we place his body, is where he remains until we change him.

Can you imagine not being able to move your own body?  Just in the time I am sitting here to type I have shifted in my chair several times.  Even in our sleep we change positions.  We are constantly changing positions, most of the time without much thought or effort.  Brayden's little body is dependant upon us to help him.  Does Brayden feel trapped?  Does he feel discomfort?  Does he feel frustrated?  There are certainly times when he seems stuck and crying out for help.  He no longer wants to lay on his back or if he is sitting in one of his chairs, his head falls to one side and him cannot get it back up.  It makes me sad for him.

He tries to find a place of comfort.  Lately, it has been bringing his legs up, almost to a fetal-like position.  That even if he wanted to straighten his legs, he could not.  It has been causing his legs to be tight.  Stretching and straightening his legs has become part of the daily routine.  We have ordered some leg braces.  The braces are to be used for short periods of time to help him keep his legs straight.

The braces have been ordered but in the meantime, his nurse was making do with household items (she is so crafty).  Brayden is braced with magazines wrapped around his legs.

The position Brayden prefers is to have his legs pulled up tight, however once we get his legs straight it seems to be a nice relief for him and he can stay like this for longs periods of time.

His sweet little skinny legs need our assistance.

Relationships with our Doctors, Nurses, Techs, Nutritionists, Receptionists,...

Brayden has a lot of contacts in the medical world.  Several of whom have been with Brayden from the beginning.  I have come to learn several things when making decisions and dealing with the medical profession.

1.  People have different tastes.  When we first had Brayden, many people were giving us recommendations about doctor offices.  The doctors and offices that they like.  We would go there, sometimes wondering...what did they see in this place?  We have not really had a bad experience with any one's recommendations. 

It is just that like friendships, you click with different people over different things, you see different qualities that be may appealing and some not-so-appealing.  I now take into consideration people's opinions but come to find my own.

2.  The right fit.  I need doctors that hear me and I hear them, not an uncommon characteristic for finding a good fit.  But to me it is more than that.  Some offices are more conventional...let's call them well seasoned.  They have seen thousands of patients, they know what works and that is what they have come to rely on, they go by the book, kind of old school.  Then there are some that think a bit newer, fresher, more out of the box, doing research looking for new ideas, collaborating with other medical professionals.  We have often heard this, "I was looking up some information and found that we could possibly try..."  I prefer the out of the box thinking (but not too far out of the box, we are not hiking the rain forest for alternative medicine).  Brayden has all kinds of random, seemingly unrelated things going on, so we need people to realize that he does not fit the typical protocols.

3.  Accessible.  Offices that have staff who answer phones, emails, etc in a timely manner and are helpful.  Brayden has several people that we communicate his medical needs over email.  If that does not work then over the phone.  We have have a few direct office lines (instead of navigating the web of options).  Then we have the personal cell phone of one (she was crazy to give us that).  It is incredibly frustrating to put in a call to a doctor's office and hear nothing back.  We have one office that calls to at least say, "This is the nurse, I have given your message to the doctor but he is on hospital rounds so he will have to get back to you later."  We just want to know we have been heard and will hear back.

4.  Going outside the speciality.  Since Brayden medical file does not fit into one office, we need those offices to communicate with each other.  Many speciality offices have a difficult time crossing over into another speciality.  Some seem to gasp at the thought!  If I could I would set up team meetings for a round table discussion...

5.  I am the mom, not the doctor.  I remind the offices of that.  I let them know what we see at home, our assessment of things.  I need the doctors to explain things to me in great detail and I often have them write down key terms and info so that I can process it all later.  Many times I may say, "As his mom, I am freaking out over this.  Tell me if I should or should not be and why."  I am his mom, I get to see Brayden day in and day out.  The doctors get only minutes.  Share with the doctors concerns as a mom, not trying to be a pseudo medical expert.

Or if the receptionist calls to schedule an important appointment and I tell her no (because one of the other boys has something planned) do not lecture me about how busy the schedule is...I am a mom to two other precious boys too.

6.  Humor.  Jeremy and I can find just about any circumstance amuzing.  We joke about being a high maintenance family.   We joke with the doctors about collecting poop.  Or something on TV or our commute in (stuck in traffic, construction, parade and the Presidential motorcade, driving in and around DC can be entertaining).  We joke with the staff about crazy or funny hospital circumstances (like when the new medical students come on, we have a med student that we will always remember as "Boo", she was seemed so scared all of the time).  We need a doctor that does not find our humor annoying or inappropriate and can chuckle with us at the right times.

Brayden had one doctor who never found us funny, he seemed to just talk right over us.  One time we warned him about how bad the room smelled because of Brayden's diaper.  It smelled so bad that it brought tears to my ears.  The serious doctor came in the room and shut the door.  We suggested that the door be left open, he still closed the door.  A few minutes later, the doctor was getting antsy and rolled back in his chair and opened the door.  Jeremy and I laughed, saying we warned him and that is was amazing such a small body could make such a large stink.  The doctor did not find it humorous and continued on with the appointment.

Finally and most importantly:

7.  Respect and kindness goes a long way.  I was once told a story about a mom whose child had many medical issues.  She was a fiercely protective mom (as we are all in our own way).  Before each hospital stay this mom would bring in their own linens and cleaning supplies.  She would scrub down the room, put on their own linens and even use their own plastic bags.  While I completely understand where this mother is coming from, I am concerned that this is really doing her child a disservice.  Can you imagine the chatter at the nurse's station amongst the hospital staff?  Before even meeting her, the staff could have put her in the crazy category.  The mom cleaning the room, in a way has been disrespectful to the competency of the hospital staff; as if from the get-go the hospital was already doing things all wrong.  If she was that way with the room, can you imagine how she was with the medical care?  Do you think the nurses and techs were drawing straws to see who got that room?

Respect the staff.  They are the ones who help you the most.  Nurses can be your voices to the doctors.  The nurses and tech make or break the quality of your hospital stay and office visits.  We have come to know and like many nurses in the ER or offices.  They help us in so many ways from tracking down doctors and reports to giving the big brothers treats.  Receptionists and front office staff are the gateway to the office.  They spend all day as traffic cops directing and helping to navigate the office, schedules and making appointments.  Showing kindness to them could help you get an appointment, get messages to the nurses and doctors, show grace when you mixed up an appointment time or help you get the needed paperwork in a timely manner.

I was never one to question doctor.  What they said, I did without a second thought.  Now I find that we may disagree with them or not understand them and I am certainly up for asking all kinds of questions.  We can find a way to respect their authority, expertise and experience when we question their assessments and possible decisions.  I may say, "I am not sure I am really understanding, so could you walk me through this."  or "I am not sure that I completely agree, since we have many medical things going on at once, I would like to think about it some more and perhaps talk with another one Brayden's doctors." or simply, "I need time to make sure this the right decision and I am understanding things."  Doctors have gone through many years of school and practice, one cannot negate their findings, even if we may disagree. 

Brayden's medical world is not perfect.  We have many days of the week feeling frustrated, sometimes misunderstood.  We have certainly switched doctors a couple of times.  We try our best to communicate with the doctors and offices to get Brayden excellent care.  Sometimes it works and sometimes it does not.  We just try to find and pray for what works best for Brayden.

We will call it a Valentine's kiss

And not a neglectful mother that left a sticker on too long.

Brayden came home from school on Valentine's Day with a sticker on his cheek (he often comes home with stickers).  Wanna guess what it was?  A heart that's right.

After he was unloaded from the bus, I loaded him into the car and headed to Carter and Luke's school.  Carter's class was having a Valentine's Day party.  I left the sticker on Brayden because it was festive and I love anything that accentuates his cheeks. 

When we finally arrived home, I peeled off the sticker and it was sticky.  Then the next morning, I found Brayden still with a heart on his cheek, no sticker just a clear sign that there was one there...shaped like a heart.

Love from Brayden

Ketogenic Wean

Brayden has not been gaining weight and as of late, he has been losing.

Earlier in the week, he had an appointment with a doctor specializing in pediatric physical medicine and rehabilitation. Brayden was there to have his spine looked at, as well as discuss seating/wheelchair/support options that would offer more support. We discussed Brayden's posture, seating and bony back. We stripped Brayden down for the doctor to have a look. He first reaction was to Brayden lower back and sacrum. I know that things are protruding and looking a bit unsettling. The doctor thought Brayden was getting too close to possible skin break down due to his lack of weight gain. The curve in his spine could be because the lack of muscle/losing weight, there is nothing there to help hold him upright.

Then Brayden has the two ERs in one day. The next day, we just crashed at home.

A couple of days later, it was time for the ketogenic clinic. An afternoon in Washington DC, with a neurologist and nutritionist. Brayden decided that he needed a wardrobe change before the big appointment so he had a mess in his diaper that made its way to his clothes. After the diaper and clothing change in the Children's parking garage we hurried up to the clinic.

After checking in and doing his weight, bp, etc. we sat in the room. The nutritionist came in and the first thing she said was, "So his weight is down and last time you were here we said that if he did not gain weight then he needed to be weaned of the diet."

I knew this conversation was coming. Brayden looks miserable. The pancreatic enzymes have not worked like we had hoped. Brayden is not absorbing food. The ketogenic diet is mostly fat, with protein and no carbohydrates. Fat is harder to absorb, and Brayden is not absorbing it. The ketogenic diet is not working for him. However it has been life changing for his seizure control. I have been fighting/negotiating/brainstorming with a few of Brayden's doctors in hopes of finding a way for Brayden to remain on the diet and gain weight. We have come up short, with no easy solution.

Brayden is being weaned off the ketogenic diet, starting immediately. The whole process could take around 3 months. However there is a compromise. Brayden is at a 4.25 to 1 ratio for the diet. We will slowly decrease the ratio. The first week will be 4 to 1 ratio. We will continue the way down. If we get to a place that it still helping Brayden's seizure control AND he is gaining weight. Then we can still remain on the diet. It is not all or nothing...we could find something in the middle. I have a phone call with the nutrionist once a week to check in and adjust diet weaning.

Two goals (and prayers) for weaning off the ketogenic diet:

Still have seizure control. Gain weight.

A Mess

First off, when did we become that family? The family with chaos circling around them. The one that the ER staff has come to know and recognize (I am wondering if we are getting a "special" star on our medical files). The family that needs all kinds of help at any given moment. I feel like when people see our number come up on caller id they are starting to think, "What happened and what do the Jenkins need for help this time."

Having Carter in the hospital last week, Brayden in two ERs in one day, the house is a mess, our schedules are mixed up, laundry is a battle that I do not want to deal with,... Not to mention Brayden has a few already scheduled doctor appointments this week, that leave Carter and Luke with a neighbor yet again. Carter and Luke both have their homework and sports. We had people working at the house this week. Ahhh! Too much stuff.

You know I like control so having our weeks be chaotic and unpredictable is leaving me a mess. I do NOT like mess.

I do not like feeling like a mess. I remember once in college, someone told me that students who dress up (meaning no pajamas or sweats) for class and particularly exams tend to have better grades. To some degree I agree with that. I like to be dressed well for doctor appointments and even hospital stays. I feel more together, more alert and taken more seriously. I realize that this may come across as vain but for me it works.

Brayden ER visit this week is an example. That morning workers were at my house, had to get Carter dressed and off to school, decide where to put Luke, deciding what to do with Brayden, calling 911...all before 7:30 a.m. I was in sweats. Before the EMTs arrived I decided to put on clothes, tossed a scarf around my neck, ponytail for the hair and no time to put in the contacts so I wore my glasses.

Just the fact that I had my glasses on for the entire day, no shower, hair in ponytail...I felt a mess, not like myself and tired. I did not feel put together.

Today, I am off to another appointment for Brayden. Am I put together today? Yup, boots, sweater, accessories, hair blown out, ready to go. Ready to discuss the ketogenic diet and Brayden's weight loss.

Seizures to the ER

Brayden's seizure adventure began on Monday night. Shortly after putting everyone to bed, Jeremy went in to check on Brayden. I went in a few minutes later. We both thought he may be having a seizure. We went back into his room. I was standing on one side of Brayden's bed and Jeremy on the other. We pulled Brayden's blanket back and watched. Brayden legs were pulled up tight and leaning to his right. His right arm fully extended and left hand in a tight fist. However Brayden's face appeared to be normal. Then he started to cry but not a full cry. A cry that sound like he was trying to get out and not able to fully cry.

We quickly decided to give him Diastat (extra seizure med). Then we watched him and watched the clock. The Diastat seemed to take affect. Brayden's body relaxed and he fell asleep. Over the next couple of hours I checked him several times and he seemed fine.

The following morning, I went into his dark room to check on him. His nurse came in about the same time. I started describing Brayden's seizure during the night. The room was still dark but we pulled down the covers and realized that he was back in the same position. Legs tight and to the right, arm extended and hand in a fist. He was back in the seizure. We turned on the lights and gave him the Diastat. Time ticked and the Diastat did not help.

I quickly dropped Carter off for the bus. Came back to the house and called 911. The EMTs arrived. We did not know a single one of them nor the medic that arrived (we usually know of couple of them and most of the time the medic). We loaded into the ambulance, Luke came along too since he is afternoon kindergarten. Brayden's nurse followed behind in the my car.

Since we did not know the EMTs or medic, I had to go over Brayden's medical history (thankfully I have a sheet that lists everything). I had to continually say that he was NOT postictal, he was still in a seizure, despite the fact that he was not shaking or twitching. They reported to the hospital that he was coming in postictal.

We arrived at the hospital. Greeted once again with those familiar faces...except the doctor. She was new, from another hospital. I was a little concerned about a new doctor since we are familiar with the others and I do not have to explain much. The new doctor was fine. The nurses and tech that we had know us pretty well and helped out.

Once I explained that Brayden was still in a seizure, they decided to give him Ativan. However, they could not get a line. 1, 2, 3, 4 tries and still no line. Brayden barely flinched when they were trying, confirming he was in a deep seizure, not to mention his heart rate was really high. Since they could not get a line quickly, he was given a shot in his thigh (some type of Ativan), a half dose.

We sat and watched, waiting for the shot to take affect. He was still in a seizure. But in the meantime, the nurse got his IV going. He was put on fluids and a dose of IV Keppra (a seizure med). Labs and tests were done to check Brayden's health, looking for an illness that could be the cause of a major seizure episode. Everything checked out fine.

However, hours after the medication was given Brayden was unresponsive but seemed as though the seizure faded away. The ER doctor was back and forth with a neurologist at Childrens (new neuro at Children's that we have never seen). They decided Brayden needed to be transported to Childrens.

About 2:30 in the afternoon, Brayden was transported to Childrens. He was in the ambulance with the driver and tech. While I followed behind in my car. Jeremy was getting Carter and Luke situated then came down to Childrens. As the transport was getting Brayden situated he started to wake up and doing better and better. By the time Brayden was in the Childrens ER, he was back to his baseline. In fact he seemed refreshed, as if he just needed that long nap.

The Childrens ER doctor came to assess Brayden and we quickly stated that he was doing great and were fine with going home. The doctor looked him over, the charts from the other ER and spoke to the neurologist. All fine and we were sent home, just a tweak to his meds and need to check in with his doctors.

We all arrived home just in time for bedtime. Brayden sporting his bands as record of his busy day.

Today Brayden is looking good, just a little tired.

(On a side note, while I love taking pictures, I do not carrying around my huge camera and snap pictures in the hospital. I take pictures on my phone...there is A LOT of down time in the hospital.)

Discharged from ER

Brayden was transported to Childrens. He is doing much better and back to his normal state. The ER dr and neurologist agreed that it is fine for him to be sent home.

Discharged from Childrens, no over night, going home to our own beds.

I will give the details of the day tomorrow.

We're back!

Brayden is in Loudoun ER and being transported to Childrens due to a prolonged seizure. As of right now, he appears to not be seizing but not coming to.

I will be back with more info.

The Heavy "Dooty" Champion

Not me...Brayden. It was a February day, about 35 degrees outside. A day for running errands, only three places to go. As we were pulling out of stop #2, Brayden went #2. We pulled up to our final stop. Opened the doors for some fresh air and headed for Brayden to assess the damage from his diaper.

Has anyone seen that dreadful Luvs diaper commercial (I cannot believe this commercial made it to air, I first thought it was a joke)? The commercial is a cartoon of babies in a contest...a contest for the biggest diaper blowout, called the Heavy Dooty Championship. This day was a day that Brayden would have won. No diaper would have contained this mess. A diaper blowout, not one piece of clothing was clean; a blanket was marked and the car lingered with the smell. Brayden's nurse, bravely tackled the clean up.

I usually have a basket in the back of the car with supplies: diapers, wipes, clothing, tubes,... I did not have a change of clothes. Brayden was back in the car seat in only a diaper. You can tell he was thrilled.

He was embracing his championship title, wishing it happened on a warmer day.

Carter is Home

Carter came home late this afternoon. He is feeling and acting much better. He was in so much pain on Tuesday and very miserable, so it is a relief to hear him talking, walking around and asking for food.

His colon was enlarged. The GI doctor and Dr on the pediatric wing concluded that it was possibly due to an infection (so thankful it was not his appendix). Carter was on clear fluids this morning and started on the BRAT diet (literally a plate of Banana, Rice, Applesauce, Toast). He tolerated it all pretty well so he was sent home. He will continue the BRAT diet for a couple of days and then gradually start back to "regular" foods. Carter is not allowed to participate in sports, P.E. or those type of activities for about a week (he is not liking that order).

Carter will continue some outpatient care with his pediatrician, GI doctor and a review from the cardiologist (Carter's heart rate was fast at the start of all of this, then last night his heart rate went really low, they did an EKG in the hospital and need him to follow up).

Carter was showered with love and goodies from his family and friends (adorable notes from his classmates, such sweet kids). Each little gift, phone call and email brought a big smile to his face.

Luke desperately missed Carter. He and Carter are a pair. They are used to being there with each other, especially because of all of Brayden's adventures. Luke asked and asked questions about Carter; got up in the middle of the night to check if Carter was home yet; and when asked if he wanted to go to a friend's house or to the hospital with Carter, he opted for the hospital this morning. Upon arrival, he toke off his shoes and hopped into bed with Carter. They watched a movie, played games and played with the hospital bed.

Happy we are home and Carter is feeling better. Tonight we rest. Tomorrow we have to convince an eight year old boy that he still needs to rest.

At the Hospital...with Carter

Brayden has frequent flier miles at the local hospitals but can we use those miles for another family member? We know or recognize many of the staff in the ER closest to home. However it is not Brayden making a visit this time. It is Carter.

He spent the evening in the ER and now admitted to Loudoun.

He has an enlarged colon (NOT due to constipation). What that means...I do not know.

This all started last Thursday, he was sick and vomited several times. Friday he was doing better, tired and not hungry, but better. Saturday he played in his basketball game but on the way home he was complaining of pain in his stomach and vomited. Sunday he was home but not really eating much. Monday, he went to school (still not eating much) and then to basketball. After basketball he was crying about pain in his stomach. Tuesday, was a snow/ice day, home from school and he was doing pretty well in the morning. Shortly after lunch he was complaining about his stomach hurting. I found him curled up in his bed and unwilling to move. He tummy was bulging out and hard as a rock. I called the pediatrician and they told us to take him to the ER.

There was concern about his appendix. I quickly loaded him in the car and we headed to ER. On the way, he vomited (all over the car because we were on the highway and I could not pull over). So we rode in the car with the heat blasting and windows rolled down on a cold wintry February day...the car smelled terrible.

Once in the ER, they were immediately checking his appendix. He was put on IV fluids, given Zofran for the vomiting and pain medication, which helped him a lot. Some blood work and an ultrasound came back inconclusive. He was scheduled for a CAT scan...he had to drink the barium. The barium drinking was a battle that I never want to repeat. We fought with him to drink it. Jeremy and I fought with each other. It was stressful and ugly. Then Carter vomited up a lot of it. He still seemed to get some in him so he was wheeled off for the CAT scan. The results came back and his appendix was fine but his colon is enlarged. In between the tests and people coming in and out, Carter was having explosive diarrhea (a few clothes and linen changes).

By about 10:00 p.m. he fell asleep in the ER and by 11:30 p.m. he was admitted to the pediatric wing. He is not allowed to eat anything yet and will start with liquids and mushy foods later today. He is feeling better and saying his stomach does not hurt as bad anymore.

As I was getting things situated for today I was discussing with Luke about where he wanted to go; with a neighbor or to the hospital. He response was:

"Which hospital? It is the bear one? Or the one with all the video games? Or the one with the cafeteria I like?"

It is disturbing how comfortable all the boys are with the hospitals and seem to know them too well. The good thing is, they are not scared of hospitals and all the equipment, they have seen enough of it.