Happy Halloween

Brayden has been busy with his Halloween fun!
Crafts at school.

Doing it up at the church's Trunk or Treat.  Yoda, yes he was Yoda.

Tonight it is trick or treating in Waterford!  This year I did not torture him with carving the pumpkin, last year we tried his hands in the pumpkin guts...not a fan.

If you can't move wiggle

For a kid who cannot move much, he sure can move.
About 4:00 a.m. he cried because he was stuck like this but with a pillow over his head.  Jeremy went in, straightened him up; tubes in all the right places, pillow on each side to help support him and protect the tubes.

About 5:15 a.m. I checked on him and he was back to being sideways in the bed.  Kicked the covers off, shirt hiked up, oxygen tube over his head (even with the tape), drain tube still hanging in the bobby pillow, laying on his feeding tube, other pillow that is supposed to be on his side pushed to the top of the bed.  Sound asleep, apparently a lot of work to get like this...it made him tired.
Seriously, what is the boy doing!?

DMO Suit...like a wet suit or spanks

Another trip in the car.  This time downtown to National Rehab Hospital (right behind Children's DC) to try out Brayden's new DMO suit.

But first before the DMO suit, I have to tell you about what happened before we even made it to the doors of the NRH...Yes, once again the traffic was TERRIBLE.  Over 2.5 hours to get downtown.  Every road we were on had some sort of issue.  About halfway through the trip, we started to smell something...Brayden was working on a diaper.  Oh boy.  The car was smelling, I am pretty sure you could see the waves of fumes coming from him.  But do we pull off the road in rush hour traffic to change a diaper?  NO way, we are not crazy.  Meanwhile I call the office to let me know that we will be late.  I was given the "if you are more than 15 minutes late then you will have to reschedule your appointment" lecture.  I politely replied with "we have been on the road for more than 2 hours trying to get there, we will still have the appointment."  We finally arrived and pulled Brayden out of the car...realizing it might have been a good idea to pull over in traffic because it was a diaper blowout; up the back and all over the car seat.  As if we were not late enough, he needed a full wipe bath, change of clothes and cleaning of the car seat.  We did the best we could and dashed into the hospital (pretty sure Brayden still had some residual smell).

They did not cancel the appointment.  In fact they were very kind and understanding, knowing the we had to travel a bit to get to this appointment.  Although, I was ready to cry/fight to keep the appointment no matter what time we showed up.

What is a DMO suit?  Like a wet suit or supped up spanks with more support.
The DMOs are fabric orthoses made from Lycra based fabrics.  They are designed to provide client specific, orthoses to assist in neurological and functional dysfunction often seen as aiding mobility and posture...The orthosis may improve the client...by reducing excessive muscle tone and improving stability...additional benefits, increased awareness of body position, increased confidence in movement or adaptation to movement.

Zippers and snaps to put it on (add many more minutes to the getting him ready in the morning and going to bed at night).  A hole/flap on the stomach for the g-tube and his j-tube.  Yes his diaper is hanging out and the legs have zippers and snaps for diaper changes (can you imagine a diaper blowout in this thing?  I did make sure it is washable).

It also came with a hard shell for his abdomen, something that can be used for extra support and/or therapy.

The DMO suit (not the shell) is to be worn every day, all day and taken off at bedtime.  But first, Brayden has to build up to that; starting with one hour the first day, 2 hours the next, etc.

Brayden did have the suit on for over 20 minutes and seemed quite happy in it.  He does really well with pressure/support/deep sensory input; it has always seemed to give his a better sense of his body and comfort being in his own skin.

The DMO suit still needs some to be adjustments to fit his arms better and accommodate both the g-tube and his j-tube.  I will drive back downtown in about 2 weeks to pick it up.

To make the trip even more worth while and a reward for myself because I needed a little boost of energy we had to make a stop...

It's all about the angle

Back to the orthopedic surgeon for an actual visit that involved office time and not just discussing things the halls.

This time we headed over the river to Maryland at a Children's outpatient center in Shady Grove. An 8:30 a.m. appointment. That meant we had to tackle I-270, which has to be one of the worst places ever for traffic heading into DC. I am pretty sure it knocks years off your life just for traveling it during rush hour.
We left at 6:30a.m. Jeremy met us there because I needed him to hear all of what the doctor had to say about Brayden's femur/hip problems and potential surgery.

Brayden was sent for lots of x-rays on his femur, hip and spine. Jeremy went with Brayden while his nurse and I waited in the exam room. Apparently the radiologist did not make the x-rays an easy experience. For one thing he insisted that Bradyen's diaper be removed and you know what happened...Brayden wet all over himself; a good soak to his shirt, undershirt and blanket...nice and wet with urine.

After the x-rays were done, the orthopedic surgeon came in to discuss. And I will try my best to explain what he said (and my illustration to show the angles)...

Basically the top of your femur should be at between at 120-135 degree angle, at the neck of the femur, to fit properly into the hip socket. Brayden's femur has barely any angle at all. This means a a couple of dangers; easy to dislocate the hip and as the femur continues to grow it has strong potential to hit the hip socket and cause significant damage to the pelvic bone. All mean potential pain and serious discomfort for Brayden. The orthopedic surgeon suggests that we have surgery to break both femurs and to place rods in that create the proper angle. It is a possibility that the hip socket has to repaired as well. All of which means long surgery time. It could be done over a couple of procedures. The doctor did spend a lot of time talking with us, answering our questions. He reviewed the x-rays, describing it all. And showed us an x-ray of a child who had the procedure done.

Our plan from this point?  I am not sure.  We are going to get a second opinion from Brayden's original ortho doctor.  And we will be back to see the orthopedic surgeon in Dec to discuss our plans.

Take out the Tonsils & Adenoids

Brayden was scoped this morning.  A scope to check his nose and throat.  Everything is looking good for surgery to remove his tonsils and adenoids.

The scope lasted several minutes.  Numbing drops.  One person to hold his head still (did I mention he HATES his head/face to be touched unless we are stroking his hair).  One person to hold his arms.  The doctor threading the scope into his nose, down his throat.

Thankfully no problems, no major gagging or retching spell (which I completely expected to happen and it did not).  Tonsils still looking really big, adenoids only a little big.

The numbing drops seem to bother Brayden, he was breathing strangely and coughing but otherwise looking good.

I called the surgery scheduler...the voicemail said 8-10 business days to return phone calls!  Hoping to have the surgery done sometime the middle of November.  We will be at Fairfax so they can handle all of his needs.

In addition to our fun...another surgery?

For the past couple of weeks, we have doing the rounds with doctors about Brayden's sleep apnea.  A talk/emails with the pediatrician and neurologist, lead to an appointment with the pulmunologist, which lead to an appointment with an otolaryngologist (ENT).

On a side note, if I were a doctor I would want to be an otolaryngologist, just because it is a fun word to say.  And yes, I like words just based upon how they sound. For example, I know a name I would use if I was a Bollywood star or NFL player or I may eat a dish because the name of it sounded good or I may say things in French or Spanish because I like the sound of those words better.  There are words I would like to add to my daily vocab because they are fun to say...not that I am at all looking to add otolaryngology because it is another doctor Brayden has to see.

Okay, back on topic, the ENT Brayden saw yesterday.  Brayden's tonsils are definitely large.  In fact the doctor called me over while examining Brayden and asked,
"Do you see the tonsils?  Do you see the black hole down into the throat?" 
I replied, "I see the tonsils but no black hole." 
To which he replied, "There is no black hole because that is how big his tonsils are right now."

The large tonsils are an easy explanation for Brayden's sleep apnea problems.  The plan is for Brayden to go in next week for a scope to check his adenoids, down the throat to the voice box to check how things look.  With the goal to be a surgery to remove Brayden's tonsils and adenoids.

While this is a common procedure, we know that this can be difficult for Brayden and it means another stay at the hospital.

Party time, all the time with the Jenkins.

Clinic, Lab, another Clinic, to ER

Yesterday was long.  I knew that it would be long but no idea it would be for twelve hours.  This post will be long...
By the end of the day, Brayden had hospital bracelets on every extremity.

We (Brayden, his nurse and I) headed downtown to Children's.  A drive that became a 2 hour and 20 minute ride.  We finally arrived for the ketogenic clinic (the special seizure control diet).  The neurologist and nutritionist were happy to see Brayden looking healthy since the last time they saw him in person was back in the spring.  Brayden has been on the diet now for 1.5 years.  Since he is gaining weight and handling the diet quite well now (after some serious weight loss), we are going to increase the diet for, hopefully, better seizure control.  Still a few questions about one medication (Diamox) and how his pancreas continues to handle the diet.

As part of the ketogenic clinic, Brayden has lots of blood work done.  We headed upstairs in the hospital for the lab.  I believe I saw 16 vials that needed to be filled.  I have learned to request certain people to stick Brayden.  He is a hard stick and we don't need people trying then calling for the "person who always gets it".  First stick and we got blood for a few vials but then it was gone.  Second stick, a slow a painful draw that filled more vials but then that vein was done.  Third stick and another slow dripping of the blood but the vials were finally full.  Did I mention Brayden is SCREAMING the entire time.

We left the lab for the cafeteria.  I dined on the usual pizza.

Then we headed to the orthopedic clinic to meet with the orthopedic surgeon and the physical medicine doctor.  We waited for 1.5 hours to see the doctor.  When we finally made it back to the examination room, my phone rang which surprised me because I do not get cell reception in the bottom floors of the hospital.  The call was from the neurologist at the ketogenic clinic.  Some of Brayden's labs were back and his potassium was "dangerously low", she wanted us to head to the ER. 

The orthopedic surgeon came in to tell me that it would be just one second.  I politely (not really) said, "We have been here all day, waiting for you for way too long and now we are told that Brayden has to go to the ER because low potassium.  I have waited for this appointment for three months, I am not taking him to the ER until we can talk to you."  He did talk with me and the physical medicine doctor in the hall of the orthopedic clinic.  He showed the x-rays of Brayden hips.  Both femurs are not placed very well into his hip socket.  His bones did not form/angle properly for them to ever fit nicely into the hip socket.  This could mean a lot of hip displacement, pain and problems for Brayden.  The orthopedic surgeon said that Brayden needs to have surgery on both legs/hips.  Basically breaking his femurs, putting rods in to properly align everything.  WHAT?!  That is some serious surgery.  I asked as many questions as I could think of in that moment, standing in the hall.  We are scheduled for another appointment with ortho surgeon in two weeks since this did not really count as an appointment.  (if Brayden's pediatrician or ped nurse is reading this...I need to talk about this to make sense of it all...is it something that is necessary...it sounds like a very big deal for Brayden).

So to be honest, I completely blocked out the conversation with the orthopedic surgeon as we dashed down the hall to the ER.  We headed for more waiting but at least the neurologist called ahead of time to let them know we were coming and what needed to be done.  We made it back to a room and again more waiting.  We were told that if the labs did not come back looking better then Brayden would be admitted to the hospital.  If the bloodwork was better, then we were headed home.

Meanwhile, Jeremy is trying to decide what to do.  I have nothing to stay overnight with Brayden and I have his nurse with me.  What to do if Brayden is admitted?  So Jeremy, Carter and Luke started to drive downtown.  The weather was terrible which means the traffic was terrible.

We waited and waited in the ER.  Finally someone came to take Brayden's blood and give him an IV.  Then we waited again.  Brayden was miserable.  He surrendered to a little nap once I rocked him for a bit. 

Did I mention that it is 7:00 p.m. at this point?  Finally the results came back and things looked better, his potassium was within the normal range.  I have no idea what happened, we just packed up and headed out as fast as possible.

I called Jeremy to let him know.  And wouldn't you know it, he was just a mile from the hospital after a 2.5 hour drive.  He turned around, the boys had not eaten so they were headed toward food.

We drove home and crashed.

Oh what a day...

So if you see me this weekend and I am a tad grouchy then you know why.

And we still have one more appointment this morning (Fri) with the ENT dr to discuss Brayden's sleep apnea.

We are the went to the Circus

For Carter's birthday, we got him tickets to the Big Apple Circus.  It was just me and my three boys for an afternoon of fun at the circus.  We loaded up on goodies and food.  Then all three sat quietly and soaked it all in. 

Brayden was happy with all the music and lights.

The Big Apple Circus was incredibly accommodating.  I called before purchasing the tickets to find out where accessible seating was in the tent.  Many of us know that accessible seating can mean a back corner because they have no other place to put the wheelchairs.  The circus had box seats, 10 rows back for our crew.  Not only great seats but discounted price for the disabled and guests.  When we arrived, the parking was not close to the circus tent.  I asked one person and they asked, "Are you Carrie Jenkins?  You can park right up here."  We parked almost in front of the tent.  Then upon entering the circus grounds, we had a personal escort that would help us get food, toys, etc and take us right to our seats.  And all I did was call for accessible seats and asked for nothing more...at the Big Apple Circus we were treated a bit like celebrities for the day!

Give me O2

Brayden's sleep apnea has recently been a bit troubling.  We have now started to put him on oxygen through the night.  On the oxygen, his O2 sat has been much better.

Brayden saw the pulmunologist the end of last week.  First thing the doctor said, "We have met before."

Then I started to realize why.  This pulmunologist has been a consult for Brayden when in the hospital...for several reasons:  vomiting a lot and they like to check for any aspirating issues; this pulmunologist saw Brayden in the PICU when he was having breathing troubles; and he has been consulted about Brayden's pancreas.  Why the pancreas and pulmunologist?  Odd combo, right?  Well Brayden's pancreas troubles are similar to kiddos with cystic fibrosis, who are monitored mostly by a pulmunologist.  When we (the pediatrician and GI dr) were trying to figure out how to give Brayden the proper pancreatic enzymes via j-tube, this pulmunologist was part of those conversations.

Ok, back to the visit.  Brayden sleep apnea is no surprise.  We talked with the pulmunologist for at least 45 minutes, discussing Brayden's issues and medications.  The pulmunologist wants Brayden to see an ENT (Ear, Nose and Throat specialist) about his tonsils.  Then Brayden may do a sleep study.  What we do next is dependant upon what the ENT dr finds.

Add at least one more appointment to this month.

Many, many things to do...top of the list, avoid the hospital

Last week I sat down to email some of Brayden's doctors.  Brayden has several appointments over the next couple of weeks and I check in with his core doctors before some of those appointments.

I emailed his pediatrician and neurologist, discussing Brayden's slight increase in seizures and sleeping troubles (his pulse-ox monitor does not show good numbers for his breathing when he is in a deep sleep).  The pediatrician emailed me back that night with some ideas on what we could do.  The neurologist emailed me back that night and said to come to the hospital for the weekend.

Confession - I kind of ignored the neurologist's email...I had no desire to take Brayden to the hospital.  How often do you tell a doctor "No"?

I waited until the morning to sort things out.  I talked to the pediatrician.  Then I spoke to the neurologist for about 20-30 minutes, I had to acknowledge that I did get her email and did not respond.  The neurologist was still wanting to have Brayden come to the hospital, she was at the hospital for that weekend and we could have direct, immediate attention from the pulmunologist.

After much discussion, the neuro was comfortable handling things out-patient.  Thank you.  The plan:  Brayden is now officially seeing a pulmunologist...add that one to the list.  The pulmunologist will review Brayden's breathing troubles during sleep.  In the meantime, we have oxygen at home to put him on at night.

So this week and next...

• Brayden visited the cardiologist...take that one off the list.  After an EKG and echocardiogram, the cardiologist said all looks good and Brayden does NOT need to see him regularly.
• But we were back to the opthamologist for Brayden's eye trouble/infection.  8:00 a.m. appointment, yawn and a stop at Starbucks afterwards.  Brayden's eye does look better so just a few more days of eye drops.
• After the opthamologist (well, after the stop at Starbucks), we headed directly to the hospital for chest x-rays that we need to take to the pulmunologist appointment.
• Tomorrow is the first pulmunologist appointment.  We are prepared with the chest x-ray and last year's sleep study.
• Next week is the ketogenic clinic when we meet with the neurologist for the keto team and nutritionist.  Then to the lab for blood work. 
• The same day as the ketogenic clinic is the cerebral palsy clinic which is meeting with the orthopedic surgeon and physical medicine doctor.  Brayden's hip is still a problem.  His right leg is significantly shorter than his left.  And the orthopedic department at Children's is the WORST place EVER!  Long, long waits and disorganized.  It will be a long day at Children's, first keto then ortho.

Busy, busy.  Living out of the car, listening to way to much NPR.  Party time, party time...

Wait, we still have all the boys in school, homework and football almost every night.  Later in the month, Brayden has a couple more appointments but I am choosing to ignore those right now.