Behind the Scenes

A little insight into what we do during the hospital stays.

• We try our best to take care of Brayden. We bring his noise-maker from home, a cd player (although his is currently broken), the movie Happy Feet, blankets from home, a couple of toys...whatever provides comfort.


• Jeremy and I have date night. It is sad to say that our last date night was during the last hospital stay in the spring. Brayden is situated and usually falling asleep, we let the nurses know that we heading out to grab a bit to eat. Down the street from this hospital is one of our favorite restaurants, Sweet Water Tavern. We order an appetizer, dinner and dessert (trying to make up for all that hospital food). If we cannot leave the hospital, we at least dine in the cafeteria together.
• I know Jeremy loves me because he knows my favorite thing from a hospital cafeteria is vanilla pudding (I know weird, right?). If he goes to get food and I ask him to get me something, he certainly brings me food, never to forget the vanilla pudding.
• I always stay at the hospital during the day. Jeremy stays the night.
• I like the nutrition center, a little room with snacks and drinks. I like to snack on dry cereal (sugary cereal that I never buy at home) and I really like the hospital ice with water.
• Nurses make or break a hospital stay. The night nurse this weekend is apparently no so good. First night, Jeremy fell asleep in bed with Brayden. The nurse tapped Jeremy on the forehead to wake him. Tap, tap, tap on his forehead!
• It is yet again July, the time for new meds students, first year residents...basically everyone "new" to their positions. You can spot the med students and 1st year residents...they carry a bag full of medical dictionaries or their coat pockets stuffed with references.
• Photos. Many, many times, Jeremy and I have used our phones to send pictures back and forth to let each other know how Brayden is doing (or things at home). I also have my camera. If you are like me, you take lots and lots of pictures but never take the time to pull the pictures off the camera. Not having much to do in the hospital other than wait around, I tend to my camera...and of course take pictures too.
• Yes, we get bored. At lot of time on the computer. I get a chance to catch up on blogs. Jeremy looks up fishing and hunting adventures and of course does work. There is not much on TV that keeps our attention.
• Speaking of TV...it feels a little weird to watch an episode of Real Housewives or the Kardashians, when medical professionals are coming in and out of the room and you need them to take you seriously. I tried watching Fox News but those stories seem to be on repeat throughout the day. I found Discovery and TLC seem to be safe (unless it is a Toddlers and Tiaras marathon, yikes!).
• At this hospital, for what seems like years, has 10+ channels that are stuck, meaning the picture does not change. Channels stuck with this lady in different positions and this man, who looks thrilled. I am tired of seeing their faces.

• Being in the hospital is not only disruptive to our family but tends to be disruptive to Brayden's medical needs. The ketogenic diet is difficult unless we are at Children's so I bring stuff from home and explain it all to the nurses and/or doctors. Medications that he takes are not all available via IV, we have to compromise on which would work best, including seizure medications. Some of Brayden's medical needs like suctioning his stomach several times a day, are NOT typical things to do, we certainly get strange looks when we explain it needs to be done (inevitably, they still check with his GI dr). And apparently, crushing the pancreatic enzymes for his feeds is a bit different because we handle that too.
• I always ask for extra supplies that we have a hard time getting from our supply company, it is our hospital swag bag.
• We are getting way too comfortable with hospitals...happy to leave.

How we doin'

We made it home yesterday evening...apparently there is an unspoken rule of discharging patients just it time to hit rush hour traffic.  Thankfully this hospital stay was not too stressful.  The staff at the hospital was great (minus one night nurse), several people have helped us in the past and stopped in the room to say hello.

Brayden is doing a little better.  Still some pretty big retching spells last night and today.  It seems as though the "gut rest" was not as effective as I was hoping. 

Yesterday, Carter and Luke joined me at the hospital for the day.  They think cafeteria food is great (so many options for them), they hit up the playroom, checked out a couple of movies, took turns pushing Brayden around the floor,...

They all eventually calmed down and settled into Brayden's bed for a movie.  Do you see Brayden resting his arm on Luke's lap?  Precious, melt my heart, precious.

Another day, another doctor

Today, Brayden's regular GI doctor is at the hospital. 

Brayden had a couple of retching incidents during the night and one this morning, however still much better than before we came in to the hospital.

The doctor is going to continue his feeds today and give his meds through the j-tube rather than IV to make sure he can handle it all.  If he does, then we are all home late this afternoon.

Starting Feeds

Brayden's hospital plans as of this morning:

Sometime soon, Brayden will be started on his feeds through his j-tube.  His feeding pump runs at 42 ml/hr at home.  To start introducing his food, he will be on 10 ml/hr for the first couple of hours, then 20 ml/hr for a couple of hours,...on up to 42 ml/hr.  The hope is to try the food for the next 24 hrs to see how it goes.

Perhaps he will be home tomorrow.

He and I have wandered these familiar halls (our room is warm and the halls are cooler but he has his light-up fan from his aunt).  We headed to the playroom and read some books.  He placed his little hand on top on my arm, his little fingers covered with band-aids from getting blood.

Do you know what this means?

Yes we are at the hospital, INOVA Fairfax.  I brought Brayden in yesterday late afternoon.  After a day of back and forth with the pediatrician's office and the GI office, the GI doctor found it would be best to bring Brayden in for some "gut rest".  The idea is that his GI system needs a break.  So nothing is put in him other than by IV...fluids and medications.  The difficult part of this is being on the ketogenic diet.  The ketogenic diet does not allow for any sugars/carbs in any way shape or form.  IV fluids usually include dextrose and saline.  The dextrose is a sugar.  Brayden can only be on saline.  Saline cannot sustain someone for very long...possibly not long enough for a good amount of "gut rest".  They are monitoring his blood glucose to make sure it does not dip down too low because of only being on saline.
An abdominal xray was done, as well as blood work.  We have not heard much about that so I assume everything is fine.

Brayden is still gagging/retching...we will see what happens as the day goes on.

This little arm wrap, a pediatric "No-No" is to protect the IV site...especially on Brayden.  We always ask for lines to be on his right arm because sucking his left hand is his only way to comfort himself.  Inevitably the best site ends up being in his left arm.  He is not happy about the "No-No" because he cannot get to his hand and ends up banging himself in the face.

If I don't talk about it, maybe it will go away

Now I am talking about it...it is vomit.
The constant vomiting is back, it is not pretty.  Brayden has been retching violently for several weeks now.  I barely mentioned it to the doctor but called this week with a desperate plea for help.  At first, I thought it could just be a bad spell of the vomiting and it would fade away. 

Well instead of fading it has been coming on stronger.  The retching is loud and a miserable time for Brayden, happening over a dozen times a day.  Anything seems to aggravate it; moving him, giving him meds, flushes, crying, etc.

I do not like to drive in the car with him alone because I cannot get to him fast enough if the vomit starts.  Since he gets nothing in his stomach other than 1 medication, he vomits saliva and stomach juices.  It has to burn.  And lately has been showing some blood.

Last week I was in the GAP with Brayden when a good vomit spell hit.  Oh it was loud and violent (think old poltergeist movies).  At one point I thought we were going to get kicked out of the GAP.

Then this morning, after an early appointment for bloodwork, we headed to Target.  I only needed one thing. I brilliantly decided to carry Brayden instead of lug out the wheelchair.  Carter and Luke taking turns to carry my purse while I carry Brayden and his feeding pump.  We barely make it in the door and Brayden starts to vomit.  It comes rolling out.  On him, on the floor, etc.  Some sweet janitor man of some sorts ran to grab paper towels.  He unrolled and unrolled paper towels to help me.  More paper towels then I could ever use but he was being helpful.  Brayden finally stopped and we got what I needed.  I hopped in the car and inside my purse was more paper towels that the Target worker sent with us.

We tried to give Brayden a "gut rest", kind of break for his system.  Yesterday 6 hours of no food, then 6 hours of Pedialyte.  I woke at midnight to start up stop the Pedialyte and start the food.  The blood work this morning will be checking his pancreas, which tends to be the problem during these vomit problems.  Hopefully we will hear some results tomorrow.  I am trying to avoid a hospital stay.

It's hip

Brayden's hip actually.  The appointment with the Physical Medicine specialist last week lead to a discussion about Brayden's hip.  His right leg seems to be shorter than his left and his range of motion is not so good.  The doctor ordered x-rays of his hip. 

We drove to Children's yesterday for the x-rays.  And I spoke to the doctor this morning, who also consulted an Orthopedic Surgeon before calling.

The x-rays are showing hip dislocation/dysplasia.  His right hip is slightly out of place, possibly due to muscles around pulling too tightly.  But also, the top of the femur, the very top that looks like a ball resting into the hip, is not forming properly.  What this means, I am not sure yet.

We do have somewhat of a plan.  Brayden will be scheduled for Botox injections, for both his legs.  This will relax the muscles and we can continue to work on strecthing his legs out.  About a month or so after the Botox, Brayden will see the Physical Medicine Specialist and the Orthopedic Surgeon for an appointment.  More x-rays may be done, look at the results of the Botox, discuss options/prognosis and possibly surgery.

I have no idea why Brayden's bone has not formed properly.  There is discussion about a bone density test being done.  I am not sure what the orthopedic surgeon may need to do.  Still questions.

Brayden does seem to be bothered by his leg.  At first I thought it was because it is the leg that was broken.  But he screams in the car seat, will not lay comfortably on his right side and does not want us messing with that leg.

I have a full time job

Jeremy teases me all the time about getting a job.

I work part time for my father (he is a consultant now in his own business since the EPA).  I volunteer/work for the church coordinating the nursery.  I volunteer at the boys' school.  I hope/plan to work on the accessible park project (which is on the back burner with the county) for which I am the co-founder/director.

I am a mom to three boys.  Three busy boys.  Carter and Luke have camps, sports, activities...
Brayden has doctors, therapies, appointments, too many unexpected medical problems, etc...

But what feel like my full time job some days is managing Brayden's life.  I sat in the study one morning this week to go through the paper work, just a few months of it, for four hours straight.  We get something in the mail from his insurance about every detail, every day..."Explanation of benefits" or "Approvals" for nursing hours, medical supplies, feeding supplies, medications, doctor appt, labwork, hospital, therapy, etc.  Everything comes with paperwork.  Then we also get paperwork for each thing from the supplemental insurance too.  Each item gets its own paperwork.  Do you have any idea how much paper that is in one month?

Then we have the delivered medical supplies.  I have to call and order them but not all at the same time because insurance cannot process it all at the same time.  Once the supplies are delivered we have more papers in the boxes.  More often than not the deliveries are messed up/incomplete and spend more time on the phone trying to fix it and get the correct supplies in a timely manner.  We also get diapers through another medical supply company so more time on the phone with them too.

Then the doctors. labs and hospitals.  Coordinating the appointments can bring on a headache...just call the Children's line for kicks, see how that goes...making appointments is usually torture and requires more patience than I usually have.  I have to check in with a couple of Brayden's doctors by email/phone once a month, too.  Then the paperwork for the doctor and hospitals.  We have had the same two insurances for Brayden for sometime now, yet still we get billed all the time.  Either it is not processed through the primary insurance correctly or not sent to the secondary insurance. We get the bills, I have to call billing and explain it all again, then call insurance to make sure it gets processed properly.  This happens ALL the time.

Medications, I run back and forth to the pharmacy usually 4x a month.  Calling in the medications becomes a pain.  I am tired of listening to the automated system...I do this 8x a month.  Sometimes medications have problems being processed through both insurances...more phone calls.

Then we have meetings with Brayden's case worker, service coordinator, school, nursing agency...

It feels like it is never ending and I am never caught up.  It is a full-time job.  I need a cool job title.  Although I do like being called Brayden's mom (and Carter and Luke's too).

Give me the Pool

We are now the proud owners of a pool.

We have a large pool in our backyard now (after too many months of frustrations during the build).  If you ask Jeremy, he will tell you that this pool was built for Brayden.  The pool has a nice ramp along the side that we can take Brayden in and eventually the possibility of a water wheelchair.

The pool is already a nice temperature that is just right for Brayden.  Oh how he loves the water.  He has been spending hours in the pool, his little fingers and toes all pruned.

He floats very nicely on his own, we just have to hold his head.  He relaxes so much, that he has been known to fall asleep in the pool, even with his two older brothers splashing around.

Let's talk Botox and Buttons

I was under the assumption that we would have a normal, relaxing summer.
If you think my normal days are anything but normal well then...

I having been discussing Botox.  Botox with Jeremy, friends and doctors.  Botox is NOT for me.  It IS for Brayden.  Botox is used to relax muscles.  Under sedation, needles of Botox are incerted into the muscles.  This is something that is being discussed for Brayden.  As he is getting older, he legs muscles are getting tighter and tighter, causing a bit more difficulties.  We visited a Brain Injury Clinic at Children's, at the clinic we meet with a Physical Medicine Specialist, a Physical Therapist and Neurologist (who happens to be Brayden's primary neuro) all at the same time, in the same room.  They looked over Brayden and talked with me for over on hour.  Lots of information, too much to share right now.  But Botox is on the table for discussion.

Then the following morning, I am doing Brayden meds, flushing the feeding tube lines, when I realized the button for his j-tube (intestine) was coming out.  I have changed the Mic-Key button a few years ago when Brayden had only a g-tube.  I was not sure if I could or should change the j-tube since the intestine is more sensitive than the stomach.  Of course, it was Saturday morning and there is no one to call so I tried the on-call GI doctor but did not get through.  So I called a friend, we discussed Botox and she gave me a refresher on changing the button.  I hung up the phone, got all the gear ready and I changed it.

Now take a step back for a moment.  I am at home, pulling a tube out of my son's intestine, leaving a large gaping hole and then I slide in a new button.  YIKES!  When I thought about having children, I had no idea this could be a possibility.

The tube works just fine...I checked it just about every hour that day. 

Yes, then we proceed on to our regularly schedule activities, like parties, pool and running errands.  All right after a major medical discussion and changing out tubes from holes in the body.  Then people ask, "What did you do today?"  Me, "Not much."

New Wheels

Brayden's new wheelchair has arrived.  It is a Zippie Iris. 

He sat in the chair while everything was adjusted and he seemed to be really comfortable.  We will use this for every day out and about, the school bus, school, etc.  It will be Brayden's primary mode of transportation.  It comes with a tray and a canopy, both of which are massive will take some getting used to.

It is a real wheelchair.  It is heavy (I will be getting a work out to get it in and out of the back of the SUV).  The new chair should last him quite a while.  It will be much more comfortable for him since he has really out grown his first wheelchair.  The equipment rep working Brayden and I for over an hour getting it adjusted and giving me a tutorial on using it, we even practiced getting it in and out of the car.

We are thrilled for Brayden to have the new chair.  It is snazzy!

His first wheelchair was the Kid Kart, which he got shortly after turning one year old.  The Kid Kart was a good transition into the world of wheelchairs.  It operated much like a supped-up stroller.

In fact his Kid Kart was often mistaken for a stroller.  We had been told, in several restaurants, that they do NOT allow strollers.  We try to politely respond to them explaining that it is a wheelchair. 

During our recent trip to the beach we went to a dinner show.  A dinner show that Brayden could not see because accessible seating was in the way back and food he could not eat since feeds only with a feeding tube..we paid full price (dinner and show) for him however we were paying for a family night out and I would rather us all be together.  On our way into the dinner show, we are stopped at the front door...we have to explain, "It is not a stroller, it is a wheelchair."  We go to will-call to pick up our tickets, we say again, "It is not a stroller, it is a wheelchair."  We go to hand in our tickets to proceed into the venue and again we are told, that they do NOT allow strollers.  And again we say, "It is not a stroller, it is a wheelchair."  We think we had made it through when a man working there comes running up to us saying (and somewhat out of breath), "I am sorry but you are not allowed to take strollers in."  By that point, Jeremy, myself and Brayden's nurse all respond with, "It is NOT a stroller, it IS a wheelchair."  I then ask for a sign or something to hang on the chair so people will stop asking us.  Trust me if we did not have to use this, we would not...and we are not trying to sneak in a stroller.

My Grampy

My Grampy passed away.  A sweet loving, God-fearing man that we will all miss.

Check the family blog.

Brayden knows how to work it

By it, I mean his great-grandfather.  For a boy who cannot communicate much, he certainly got his great-grandfather wrapped around his chubby little finger.

Jeremy and I were putt-putting with Carter and Luke.  Great-Grandpa was watching Brayden.  When we started the course Brayden was in his wheelchair. 

We came around the corner finishing up the game and we found them.

 Quality bonding time under the umbrella...not sure who napped more...

Excuse my hair...I have not figured out how to pull off beach hair.

Happy Camper

Yes, we went on a trip to visit my grandfather in Myrtle Beach.  Yes, we went camping...sort of...we rented a trailer (surprisingly nice) to stay close to my grandfather who has a camper on a campground right on the beach.

Brayden is apparently a fan of Myrtle Beach.  

He floated in the waves one afternoon for a long time.  We gently held him and let him rock up and down with the water.  He was only happy if he could lay down in the water.

If we tried to sit him up at all, he would push his head back until he was in the water.  He almost looked asleep from being so relaxed.

Later he did the same thing in the pool.  He loved the water.  His nurse found him a float that he relaxed in for a long time.  Could he look more relaxed?!

Brayden enjoyed the beach life.  Hanging out in his jogger stroller, fan blowing and naps whenever he felt like it.