Saturday, February 28, 2015

Why not try Whip Cream

To play in.  We came home from lots of sports events and found Brayden playing in whip cream with his respite worker.
Oh the fun...he did fine until it came time for clean up.

Saturday, February 21, 2015

Some days you just can't face the world

So you cover your eyes and pretend it is not there...

Sunday, February 15, 2015

Oh the BiPAP

A talk with the sleep clinic, the doctor asked how we were sleeping.  My reply, "I am absolutely exhausted now that Brayden is sleeping better."

It has been several weeks now that Brayden has been sleeping with his BiPAP.  There may have been several nights I was ready to toss it in the trash.
Keeping the mask on him has been a difficult task, to put it nicely.  He fights it for the first hour or so, then finally falls asleep.  Normal movement and waking in the night, the mask shifts.  It ends up over his eye or mouth or down around his neck.  I stay up very late to keep adjusting the mask, trying to not wake him.  Then I wake up 1-2 times when Brayden cries/shouts because the mask has moved.  Then Jeremy is up around 4:30a.m. to leave for work, adjusts the mask or just takes it off.
A call from the sleep clinic to discuss how Brayden is doing.  Brayden's numbers while sleeping with the mask look really, really good.  He is actually breathing quite well.  So that makes me feel at least a little better about the mask.  He is sleeping better, and it is quality sleep.

We continue to adjust the mask.  We have taped the top of the mask to itself in hope of making it tighter around his tiny microcephaly head...that is helped keep it in place.

For the last week Brayden slept with the mask on for the entire night, with only a couple of adjustments here and there.  He is tolerating it much better and I am as well.

A goodnight sleep is such a great thing.

Wednesday, February 11, 2015

A Doctor and a Dentist

Time for appointments.  First up the orthopedic surgeon.  Brayden has been with this ortho since his first pair of AFOs.  This doctor helps us with broken bones, braces/equipment and Botox.  It has been several months since Brayden's last Botox.  Amazingly, he has not been too tight.  His hips and hamstrings are tight, as well as his feet (his look to be curved, really arched).  Thus it is time for another round of Botox, which we will be scheduling soon.
Then it was time for the dentist.  The appointment I dread the most.  Not because of the outcome but because of how Brayden will handle it.  Could there be any more torture for a boy that HATES to have his face touched, have things in his mouth and gags/vomits with just saliva?!
And sure enough, he gagged, coughed, screamed and cried...but he would open his mouth on command, several times. 

A huge bonus of never eating by mouth, it he is at VERY low risk for cavities.  We still have to brush and they recommended an electric toothbrush so when we did get in there to brush it would be more productive...oh that sounds like fun...

This is not a face of a boy that likes the dentist.

After the dentist...he still went to school.

Monday, February 9, 2015

The Feeding Tube version of Luv's

This week is feeding tube awareness week.
I need someone to help me make a video for the feeding tube version of the Luv’s diaper commercial.

You know the Luv’s diaper commercial that shows the first time mom, so tightly wound.  Then flash to her 2nd, 3rd child and it is a free-for-all, a MUCH more relaxed mom.

That commercial would be the best way I could describe the years of having a feeding tube.

First time the feeding tube comes out (a Mic-Key button in our case).
Getting a feeding tube is very intimidating.  Trying to take care of your child with a feeding tube can be overwhelming…and frankly terrifying at the beginning.  Coming home from the hospital with all of the gear, medical supplies and deliveries, a lot to handle.

Then the tube comes out for the first time…and it comes out, not on purpose.  It just pops right out.  Holy PANIC.  THE TUBE CAME OUT.  At first you are paralyzed with fear, standing there looking at a big hole right in to your child’s body.  There is a big hole right in to Brayden’s body, right in to the stomach!  Things are oozing out of that hole.  As you attempt to overcome the initial wave of panic, you start to move in to action.  Move them to the bed, while shouting at your other kids to be quiet because you need to concentrate, start dialing the doctor and/or 911 (and once we may have had a grandmother praying loudly over Brayden when his tube came out).  Lay out a sterile chux.  Wash your hands, get on the gloves.  Remove all of the child’s clothing so you can see what you are working with.  Open the tube replacement kit and go over every bit of it, may even look at the kit booklet. 
Then…you wonder if you are capable of replacing the tube.  Can the doctor talk me through it?  Wait for the ambulance?  Drive to the doctor or ER?  You take a big deep breath and try to push down the panic/fear.  You have to put a feeding tube back in.  Wait, what?!  I have to put a tube back into the hole of his body?!  Am I qualified to do this?  I have to do this.  Here it goes…  Gloves are on, the tube kit is open.  Clean the tube site.  Prep the feeding tube to put back in.  Deep breath…and you slide it in, you are not breathing and silently praying.  It is in so now you fill the balloon (which is inside the stomach to keep the tube in place) with sterile water.  You lean back and realize you just placed the feeding tube back in.  You wiggle it gently to see if it is really in place.  Clean it all up again. You still call the doctor to make sure you didn’t do any damage, check if you need to see the doctor or hospital (which you usually do not have to).  You are still not sure you actually did it right so you check every hour and hesitate to even give food through it.  You flush it to see if it will work.  When you actually get up the courage to hook up the food, another wave of panic comes over you, will it work?  Even if it looks good, you are still going to see the doctor the next day to have it checked (if you haven’t already called 911).

Fast forward several years and we are still handling a feeding tube (now Brayden has a Mic-Key g-tube and a separate Mic-Key j-tube).  Loading in to the car seat and the tube gets caught on mom’s shirt.  Pops right out.  The hole in his stomach is oozing out on to your shirt and your child’s clothing as well.  Shout to the brothers to grab a rag to cover the hole in their brother’s stomach, while mom rummages through the back of the car to find the tube replacement kit.  No panic, no fear, not even from the brother’s (at this point they might even be able to replace it).  While looking through the car, you realize the bag with the tube kit was taken out to make room sports gear and other things.  You look down on the ground and see the tube that just popped out is laying in the parking lot.  You pick it up, it is not really dirty.  Grab a bottle of water and rinse it off.  Meanwhile brothers are still holding a rag over the stomach hole while discussing their basketball games.  Then you find a syringe in the bottom of your purse (yes I have those things laying around everywhere) to suck out the water in the balloon so you can put this tube right back in.  Slide it in to the hole (which is technically called the stoma) in the stomach, while your child is in the car seat.  Fill the balloon.  Tube is back in.  Give it a quick turn to make sure it is in place.  Clothes are a little wet from the oozing out the hole but nothing too bad, so you buckle him up and drive.  No one is upset, just may be a little hungry but we will take care of that when we get home.



Disclaimer – a feeding tube coming out is still not something to take lightly.  But hopefully those who have been handling tubes for a while can appreciate the humor and difference from the first time it came out to when it does now.  If any troubles or concerns come up please do contact your doctor.  And it obviously depends on the type of tube you have.  Brayden has also had a GJ tube which does require a visit to the hospital for a placement with the radiologist.  The simple Mic-Key buttons that he currently has is something we can put in and out at home…and certainly do not make it a regular thing to pick them up off a parking lot, just what you have to do in a pinch.  The GI system is not a sterile environment, it is not like have a trach, pic-line, etc.

 

Sunday, February 1, 2015

A weekend at Jill's House

Brayden's weekend at Jill's House finally arrived.  It amazes me that every time he arrives, he knows exactly where he is and he is immediately peaceful (and he is only going there every 3-4 months).

Thankfully for this drop off I had Carter has my helper.  Every time we arrive with more gear.  This time we added the Bi-pap machine...giving them a try with it and let me know what/how he does with the mask on during the night.

We unloaded all of the gear and proceeded to a room to prep Brayden for bedtime.  The first evening is so busy for the nurses (they check in all of the kids, medical papers and gear) and Brayden's bedtime medical needs are very time consuming, so I stay to do all of his night time medications and procedures, per their request.

We always see familiar faces and love the nurse there.  A nurse new to Brayden was part of the check-in...and as one of the veteran nurses said, "Brayden looks really high maintenance on paper but once you get the hang out you realize it is not too hard."  Thankfully they are comfortable with Brayden's needs.  And Brayden is sure comfortable to be there.

After kissing Brayden good night, Carter and I joined other parents for dinner in a nearby room.  Hearing their stories and about their children (even a family from a country that doesn't acknowledge much about special needs kids or even value them).  Such wonderful families and kiddos, with stories all of their own.  We are all so blessed to be a part of the Jill's House community.

Brayden had another great weekend there.  Time in the pool.  Time in a sensory room filled with fancy lights.  Time listening to music.  All of his favorite things.  And of course getting pampered to his liking (apparently getting a leg/foot massage was a new favorite).

I truly delight in picking him up at the end of the weekend.  My heart could burst with joy when I see them wheel him around the corner and I first lay my eyes on him.  Every time he looks older.  And every time he looks so peaceful.

But the best part is driving him home.  He talks about his weekend, he wants us to know all about it.  Most days at home, he is a very quiet kid (except for crying and being upset).  We do not get a lot of happy noises out of him.  Here he is telling me all about his time at Jill's House (his face may look a little mad but that is his face when he is really trying hard to "talk" to us).  He "talked" there entire way home.
video