Busy, gearing up for more busy

This week has been busy. 

Lets start with the fun stuff.

This caricature of Brayden was done during our Make-a-Wish trip. 

The artist knew it was for Brayden's wish trip and added a little extra.  I finally had the picture professionally framed and is now hanging in Brayden's room. 

Now the not so fun stuff.
Brayden screamed his way through the beginning of the week.  So much, that I picked him up from school one day.  It may have been because he had an eye infection.  We (the nurse and I) took him to the opthamologist to have it checked out.  His eye was really blood shot.  Brayden SCREAMED the entire time we were there.  It took two of us to hold him just for the doctor to look at his eye.  It was some sort of infection and was irritating his eye.  We now have a couple of eye drops to give him.  Then a follow up appointment with the opthamologist next week...oh, looking forward to that appointment...

Deliveries. 

Lots of medical supplies delivered this week.  And I have NO idea where to put everything.  First, Brayden received a portable suction machine.  His vomiting still continues.  We are now the proud owners of his original suction machine to pump his stomach and a new suction machine to suck the vomit/bile/saliva out of his mouth.  Not only do we have two suction machines, but now the multiple canisters and tubing (we get a couple of months supplies, so a set of 8 for each machine).

We started with a new supply company for some of Brayden's needs.  All of his feeding and respiratory come from one company.  And this new company is (hopefully) able to get some of the random supplies, like diapers, gloves, bile bags, etc.  Those supplies arrived this week.  Boxes are everywhere.

Brayden's closet needs a makeover to hold all of this gear.

Seizures.
Started off the week looking good.  Then today, four significant ones this morning.  Followed by at not-so-good seizure this afternoon.  Diastat was given and so far he seems out of it.

Sleep.
Brayden has been sleeping A LOT...whenever and wherever he can.  If he is not sleeping, he is trying to sleep.  I am not sure what to do about it.  I have been noticing the past several weeks that his night time sleeping is really deep, too deep.  His lips turn purplish...I put him on the pulse ox monitor and his O2 sats are low, dipping into 70s and 80s (it should be high 90s).  I jostle him around to wake him up to get a good breath and watch his O2 go back up into the 90s.  I have emailed a couple of doctors to hopefully figure things out...who knows what is going on...

September - we settled into the routine of school and activities
October - many doctor appointments, lots.

Fear

Fear: a distressing emotion aroused by impending danger, evil, pain, etc., whether the threat is real or imagined; the feeling or condition of being afraid. Synonyms: foreboding, apprehension, consternation, dismay, dread, terror, fright, panic, horror, trepidation, qualm. Antonyms: courage, security, calm, intrepidity.

What are you really, truly afraid of?  I'm not talking spiders, roller coasters, etc.  Fear, deep down inside fear.

I have to be honest, I am just going to put it out there and this will be some ramblings of my thoughts.  You may think I have jumped over to the crazy/paranoid train...sometimes I feel like I may.  This fear, it is a new fear.  It may have always really been there and I have not acknowledged it but I feel it now.

I am terrified of losing Brayden.  Like, I feel it.

Developmentally Brayden has been improving, medically not so much. As he gets older, we seem to be discovering more "problems". His first year of life, he seemed to only deal with very mild seizures (and of course severe developmental delay). Now...well it would just take to me long to explain all that we manage on a daily basis.


Over the years we have seen him in the hospital more times than I can remember.  Thousands of seizures, some that seemed like he may never come out of no matter how much medicine they were giving him.  Yes, I was scared in the moment but never truly fearful.

Until this past spring when Brayden had 3 back-to-back hospital stays.  One of the hospital stays was the hardest ever.  After no food, no feeding tube, several procedures and being intubated twice in just a matter of a few days, he went into respiratory distress.  The real first time it has happened to him.  Yes, he does have some problems with his oxygen sat. when dealing with seizures but nothing to this level.

This was the first and ONLY time Jeremy has called me late in the night to tell me I needed to get back to the hospital IMMEDIATELY.

As most of you know, Jeremy does the nights at the hospital and I handle the days.  Out of the countless hospital stays and ER visits, we have NEVER called each other saying (with fear) you need to get back to the hospital immediately.

I can feel the adrenaline rush just sitting here typing about that phone call.

I do not think we were in real danger of losing Brayden at that moment.  Even though things were serious and he was in the ICU, he was still breathing on a bipap machine and not intubated because he absolutely could not breath, he was breathing some on his own just not enough.  But I have never seen his body work so hard just to be functioning.  Seeing a machine force air into your child's body, watching his chest violently puff up and down...definitely rattled me.

What I have realized is in the that moment a little ugly seed was planted...how much longer can Brayden live like this?  I know Brayden is medically fragile.  If we were living in a 3rd world country or just did not have access to proper medical care, Brayden would not have lived long.  I realized that Brayden's body goes through so much just to be functioning whether in the hospital or at home.

I have met many families that have walked similar paths and have lost their children.  I can barely stand to hear about it, it feels too close.

It doesn't help that we have had doctors start discussions with us about "quality of life"...what this translates to me is that there is not much we can do, we just manage what we can to keep him comfortable.  Then doctors surprised that he is going to school or that he even lifts his arms.  We had one doctor say "Wow, look at that!  He brought is hand up to his face!"  I am thinking, umm did you not think he could be able to do that?

The doctors have ordered tests looking for a syndrome/all encompassing diagnosis.  And I would read up about what they were testing for and always listed in the descriptions is life expectancy.  In black and white, many saying that the child does not live past "early ages or childhood".  While Brayden has never fully fit into just one diagnosis, he certainly seems in some categories one way or another.  And we had certainly had the hospital chaplains (not from our church, the ones from the hospital chapel) come in to check on us.  I know they mean well, but having chaplain come in to talk...well I have seen too many movies.

Pretty much since the day we brought Brayden home from the hospital as a newborn, I take a deep breathe and whisper a prayer before walking into his room in the morning.  I have always been worried about what I would find, never knowing what was on the other side of the door.  It would be simple things like:  Please no messy diaper since he doesn't cry to let us know and he may have been laying in it all night.  Or how much vomit this morning, please no bloody vomit, skin burning from the vomit.  Please no terrible seizure...

But those have just been worries/concerns.  This new fear is bigger, may be coming to grips with what Brayden's life is/is not.  My thoughts about this are all over the place.  Is God preparing my heart for the inevitable?  Brayden's body goes through so much to be here on earth with us, do I want to imagine him free of it all and sitting with Jesus in heaven?  Am I really trusting God to know what is best for Brayden?  If I ask HIM, do I really want to know the answer?  Is my fear really about control?

Frankly, I just do not know what to do about this fear.

This week I was reading a book discussing the Holy Spirit, specifically about Elisha.  I felt like these words were in flashing neon letters, "[His] response to their situation was not fear, but confience in God....  Fear turns into courage."

I need courage.

The Help

Have you read the book?  Seen the movie?  I have.

The way those women treated their help was appalling.  I cannot fathom treating people like that (just because of skin color), let alone someone you are entrusting the care of your children to.  Can you imagine speaking to someone like that?  Then have them turn around to care for your children?  Whether you read the book or watched the movie, it is very clear there is a special bond between the help and the child, despite the chaos around them.

I have to admit that I never thought I would have help.  I have help with the cleaning...we love our Ms. Alma and her ladies.  Sometimes I even have help with the groceries...thank you Peapod delivery and Harris Teeter pick-up.  But having help with Brayden, is the most important and the most difficult.

Having a nurse to help with Brayden has certainly been life changing for me.  It is a relief to have help.  But making it comfortable is when it becomes difficult.  I am asking someone to take care of my baby.  One of my most precious things ever, and I am asking someone else to take care of him.

Yes, the nurse is there to do a job but taking care of my child is so much more than a job.  I do not think that yelling, belittling or just not treating the nurse unkindly will help.  I feel like the more comfortable the nurse is in our home, the better a job they will do for us.

Brayden cannot tell me how he likes the nurse.  I just have to watch him and see how he reacts.  There are so many little quirks to Brayden.  Fake cries, strange looking seizures that may not look like a seizure to start, where to place his toys, where to touch him, how to get him comfortable, etc.  All takes time...getting to know Brayden.

A nurse is with us for 40 hours a week.  That is A LOT of time.  Of course we have to set up boundaries but the nurse becomes a part of our daily life, a way that we function as a family.  It is a big deal.  I have to be comfortable too.  The nurse is around my other two boys as well, several hours a day.

There a lot of factors that go into good or even great nursing care.  This person is in my home, taking care of my baby.

How do we find a balance between demanding the job be done well and integrating them into our family?


*In case you are wondering, the new nurse is working out great.  Brayden's has shown her his seizures, vomits, tube came out and she replaced it, big diaper blow-outs,...she handled it all with flying colors.

Listening and Seeing

As I was out running errands today, I happened upon the Kids Radiothon for Children's National Medical Center.  All day they played songs intertwined with stories about children who have come to Children's.  I sat and listened, definitely teared up for a few of the stories.

One dad shared a story about his son.  His son was born with several brain abnormalities and found out that he had a certain syndrome (one that Brayden was tested for).  As he and his wife were trying to process all the new medical terms and adjusting to what that meant for their their son, one of the doctors pulled the dad to the side.

The doctor said something like this, I am not going to talk to you as the doctor, I am going to talk to you parent to parent...
Soon, you will not see the syndrome and medical problems, you WILL look at him and see your son.

We are often asked, how do we do it.  We do it because he is our son.  A love so strong that we see past the medical problems and things he cannot do...a strong love because he is our son.

New Nurse starts tomorrow

Yesterday afternoon I meet with a woman that will be Brayden's new nurse.  The agency that facilitates Brayden's nursing care, set up the appointment (love the ladies at the nursing agency).  The nurse came to our house.  She seemed very sweet and was incredibly kind to Brayden.  I went through some of the basics for Brayden's care and she seemed comfortable with it all and ready to learn the things she was not.  We discussed schedule.  It all seemed to line up just fine.

After she left I called the agency and said we were ready to start with her.  Thus she will be coming tomorrow afternoon to get Brayden off the bus and spend the afternoon with us learning the ropes.

The nurse will be with us M-F for 40 hours and going to school with him once a week.

In preparation, I pulled out all of our information on Brayden.  In the past, I typed up info for his respite care and nurse.  I had not looked at the folder in over a year, my how things have changed!  I had to rewrite just about everything.  I like everything in writing, so that if there is ever a question or concern, it can be looked up (especially if I am not around to answer).

Here is what I have in our packet:

• Emergency sheet - we have this sheet every where (school, bag, car).  Includes all important medical information like lists of medications, doctors, diagnosis.  It is what we hand to the EMTs, ER doctor, or when being admitted to the hospital.  Lots of info crammed on one sheet.
• To do Daily Medications; To do Suctioning, Ketones, Blood Glucose
• Weekly Schedule - an idea of Brayden's daily activities
• Supplies - Cleaning, organizing, etc.
• Info of his Tube and Seizures
• Using the feeding pump
• Ketogenic Diet mixture and information
• Fact Sheet - fun little bits about Brayden's likes and dislikes, words he responds to, etc.
• Diagnoses - brief explanations of his diagnoses
• Optional - House Rules (I have not done this but I know several moms who do)

Yes, the nursing agency provides charts and notes for the nurses to fill out based upon Brayden's medical needs.  This information is for the nurse to better understand Brayden.

Pray for this new nurse, that it will be a good fit for our family and Brayden.

Stand Tall

Brayden was put in the stander this week.

He has not been in the stander since early March (before the broken femur, botox and hip problems). 

When Brayden was first starting the stander, over one year ago, he would scream and fuss.  It would take him about 10 minutes to settle down and be able to tolerate being upright in the stander.  So, leading up to this week in the stander was me being worried about it.  I checked with the physical med doctor twice to make sure that when she said "Give it a try", she really meant give it a try.  We have learned that some doctors say "give it a try" and they are really saying "don't do it but you are the parent so I can't really tell you what to do."  Anyway, Brayden got cleared from the physical medicine doctor and PT at Children's to try the stander again, despite the problems with his hip.

I was fully expecting Brayden to be mad/irritated/hurt/stressed/etc when put back in the stander after many, many months of not using one.  I went to school to talk to the physical therapist and Brayden's teacher while we tried him in it.  The PT scooped up Brayden put in the stander, I held my breath...

Brayden acted like it was something he had be doing all along.  It took Brayden almost an entire school year, last year, to be able to tolerate the stander.  He finally built up to being in it for 30 minutes or so.  This time, trying it after his leg and hip problems, we set a goal for him to be in the stander for 10 minutes.  About 5 minutes in, he feel asleep, standing up.  He remained comfortable for 15 minutes, then they wheeled him down to the front office to deliver the attendance, wheeled him back to the classroom...still not a cry or even a whimper.  He was in the stander for over 20 minutes without any problems.

Now the stander will be part of his daily routine.  I guess he has grown up. 

The Fun of a Haircut

I enjoy getting my haircut.  It is incredibly relaxing.  If it was socially acceptable to fall asleep, I would.  And right now I need the end of the summer, get all of the dead ends off, hair cut.  One of these days I will make to the hair salon.

But today was Brayden's turn.  In my perfect little world, Brayden would have had a fresh hair cut before the first day of school...to look dapper and all for the big first day.  Well, that did not happen, we completely ran out of time.  We get his hair cut at a little barber shop in a town the opposite direction of everywhere we go, so making time for his hair cut has proven to be a bit more difficult.  And I put it off all this week because of the torrential down pouring of rain every day.

Today, I was determined to get his hair cut.  Ask most parents of special needs children about hair cuts and I am pretty sure they would tell you that hair cuts are stressful.  Propping up the child, holding them still, the clippers, scissors, hair flying everywhere (and no matter what Brayden seems to get in his mouth), not to mention all of the sensory issues...it is no simple task and certainly the opposite of relaxing.

We arrive, I put on a cape, Brayden puts on a cape and then I put him in my lap.  He is certainly doing better with haircuts these days but holding his head, when he does NOT like his face to be touched, is still something that gets him mad.

I think I hold my breath for the majority of the haircuts.  Praying that a swift head jerk will not result in a clipper creating an unforgiving line/cut or a wound from the scissors.

Today went pretty well.  The proof:

Then home for a bath and he naps the rest of the afternoon...apparently the stress wore him out.

Let's revisit the first day of school

Sure the pictures look great, everyone put together, ready for the first day of school.

Carter and Luke selected their clothes and shoes for the first day of school.  Laid out the backpacks.  All done the night before.  Brayden's wheelchair ready with appropriate buckles and straps for the bus ride, backpack and supplies ready as well.

And the night before, Carter and Luke selected their choice for the first day of school breakfast.  StarWars pancakes (Williams Sonoma pancake molds) topped with chocolate chips, bacon, eggs and fruit.  I put out fun plates, cups/straws, place mats for the big breakfast...getting ready to make it all the following morning.

Went to bed, ready for the first day of school.

Around 5:45 a.m. I found out that Brayden's nurse was not able to make to our house that morning to help get Brayden ready for school and to go to school with him.  I sprang into action and quickly grabbed a shower.  Then woke Carter and Luke for their showers.  Luke in my shower.  Carter in the boy's shower.  I quickly start getting Brayden's meds done, his food prepared and dressed.

Luke is dressed and I am wondering where Carter is...oh he was still in the shower...for 30 minutes!  I just assumed he would get in and get out, I woke him in enough time for about a 5 minute shower.  Apparently he was savoring that warm shower early in the morning.  I shout at him to hurry up because he had run out of time to eat breakfast.

All the while in the back of my mind knowing that I wanted everyone ready in enough time for those first day of school pictures at the house and bus stop.

Then I realize that while getting Brayden ready, I ran out of time to make Carter and Luke's special breakfast.  I had to think of something fun and special to do real quick.  I run downstairs, grabbed donuts, squirted whip cream in the middle and put sprinkles on top (they also had healthy things).  I thought it was fun, right!?  Well, the boys thought the whip cream was gross on donuts and sprinkles were for ice cream.

Everyone ate breakfast, quickly.  Brayden is busy sitting in his wheelchair, I am scrambling to figure out all of the straps (I should have done a trial run before the first day of school).  Then Brayden proceeds to have a lovely vomit spell...no time for vomit people, no time.  And I am praying that he does not soak into his clothes because there is no time to change him.  Carter and Luke run to get him some paper towels for clean up.

Brayden's bus papers said that his bus would arrive at our house for pick-up at 7:03 a.m.  It was 7:02 and we are wheeling his outside, still vomiting because I did not want him to miss the bus the first day of school.  And I needed him on the bus so that I could get Carter and Luke to their bus stop by 7:17 a.m.

7:03 comes and goes, no bus for Brayden.  But we now we have time for photos.
7:10 comes and goes, still no bus for Brayden.  Carter and Luke decided to wheel Brayden to the end of the driveway so he is ready when the bus comes.

7:15, still no bus and it is time for Carter and Luke's bus.  I cannot see the bus stop from our house so the majority of the time I drive them to the bus stop.  This morning I could not drive them because there was no way I was going to get Brayden out of his wheelchair, undo all of the straps, pull off his gear and supplies to breakdown the wheelchair to load everyone into the car. 

So we end up running down our street for Carter and Luke's bus stop...and understand this, we live on the side of a large hill/small mountain, our road is steep and going downhill with the wheelchair is NOT something I would suggest.  At any moment I felt like he could have gone rolling away towards serious destruction.

About half way down the hill, we see a bus.  It is Brayden's bus.  I shout to the driver to turn around and meet us at the end of the road.  The boys and I continue down the hill to the end of the street.  Brayden's bus turned around and parked to pick up Brayden.  I scramble to get Brayden on the bus, barely talking to the bus driver because I am frazzled, sweaty now and a bit out of breath.  It takes a while to load Brayden on the bus with the lift and then put on all of the wheelchair locks that have to happen for safe and secure bus ride.  Meanwhile, his bus is blocking several families from reaching the bus stop for their first day of school.  Cars are parking and kids are running, parents following behind trying to get pictures.

Carter and Luke's bus arrive, all the kids load.  Their bus pulls off.  Brayden's bus pulls off.  It was about 7:20 a.m.  I then have to walk/climb back up the hill to get in my car to rush to Brayden's school because they are expecting Brayden's nurse to be getting off the bus with him.  I flag down a neighbor who gives me a ride up the street.  I hop in the car and dash off to Brayden's school (about 20 minutes away).  Remember how bad traffic is the first day of school?  Apparently everyone leaves for work right after getting the kids off to school.  I make it to Brayden's school, explain that his nurse will not be joining him (praying that they are okay with it all).  I talk to the teacher, aids, then the PT and the school nurse. 

At that point, I am finally children free but not stress free.  I load myself into the car and drive to the nearest Starbucks.  I sat in Starbucks for two hours, barely doing a thing.  For the first hour, I just sat and didn't even get coffee.  I did my best to not make eye contact with anyone and praying that I would not run into anyone I knew because at any moment I felt like I was going to burst into tears.

I finally made it home.  Brayden had a good first day of school, although he screamed all the way home on the bus.  Carter and Luke were happy to be back at school.  How I just needed that day to be over.

How Brayden does the rain

Brayden's previous wheelchair had a canopy (much like a stroller) that we could cover him with to keep out the majority of the rain.

We do not take him out much in the rain because I have no desire to get soaked putting him and all his gear into the car, putting together his wheelchair and breaking it down again to load in the car.

However, on school days...well school is not canceled because of the rain.

It has been raining here non stop for too many days.  A rain coat for Brayden does not do much good, it would just keep his shirt dry.  What about his pants, his wheelchair?  He has to sit in his wheelchair for several hours at school so it cannot get soaked.

The bus does come to the end of our driveway (which is not too long) but the wheelchair lift on the bus is slow and fully exposed to any weather elements.  So what to do?

A poncho!

I kept a poncho (apparently a nice poncho that has snaps on the side...who knew there were nice ponchos) from a trip several years ago to Disney when I had no desire to get wet on a ride.  I dug out the poncho and gave it a try for Brayden.

He was not too fond of the poncho, especially around his face.  But I do like the way it accentuates his round cheeks.

He is dry.  Wheelchair is dry.  Hooray for ponchos!

Meltdown Explained

I will do my best to explain where my head and heart are these days.  This weekend was rough for me, everything was bubbling over till I finally exploded or imploded...whatever it was, it just wasn't pretty.

It all seemed to start in the spring/summer.  Too many things going on to fully explain and frankly each one deserves a full blog post on its own.

: Brayden - when can we reach a plateau, a steady time with him?  There is something to constantly do, a doctor to call, a problem to address.  I naively thought he would only have one appointment this entire summer and trust me he had plenty more than that.  His needs have become so complex.  I am literally the only one who can care for him.  Jeremy can only do so much, obviously because he works.  I am the one to go to the appointments, handle the insurance, medications, supplies, etc.  Which is totally fine but it has its moments of feeling isolated and too much pressure of being the only one "qualified" to make decisions regarding Brayden's care.

: Carter and Luke - I have been stressed this summer and unfortunately I feel like the fall out from that lands on them.  I have been grouchy, then I am short with them.  I PROMISED them at least three times this summer that we were going to an amusement park and every time something major came up for Brayden and we never made it.  They are so patience and loving.  I have had to apologize too many times this summer for not being more understanding and kind to them.

: Mother Bear - being protective of my children.  Brayden has seizures and they are painful and frightening to watch.  Yet, he has them ALL the time.  And we hear terrible "warnings" about not recovering and/or breathing problems during or because of seizures.  Brayden vomits violently too many times in a day.  He has days when he is uncomfortable in his own body.  As a mother, all you want to do is to make the pain go away...and when the best doctors are doing their best and this is what we have to "settle" for, then it hurts.  I hurt for my child.  And I want to protect Carter and Luke, praying that having a brother with medical needs doesn't damage or hurt them in some way.  I never want them to feel like their are less of a priority.

: Jeremy - when he and I are off, the whole thing is off.  He has been incredibly busy with work, more so than ever, even since I have known him.  This summer was not filled with fun family outings and quality family time that I so wanted.  It was consumed with everything else.  Days would go by and we barely had sentences with each other.  Not because of anything bad, just not enough hours in the day.  Then with all fall activities (starting in Aug) our time was/is more consumed.  I felt as though I could not/was not able to share my needs/emotions/stresses with him and holding way too much in to myself.  And he has been too stressed to hear me.

: Double life - we live in the medical special needs world with a son whose needs require meticulous care and attention.  AND we live in the "normal" world with Carter and Luke trying to give them every opportunity.

: Help - we had a bit of a rough summer with Brayden's nurse and unfortunately we had to say goodbye last week.  She became part of our family.  She loved Brayden.  But it was no longer a good fit.  Now, we begin the process of looking for another nurse (which took months last time).

: Stuck - Jeremy and I are not the best "lay around the house" people.  We like to be out doing things.  As Brayden is getting bigger, his equipment getting bigger and getting out get harder. Oh, how I want a fabulous trip just to get away.  We joke that if we did not have Brayden we would probably spend too much money on traveling.  However, it did help to have a pool this summer.

: Being a mom - as some point in being a mom you realize that your life becomes nothing about YOUR life but about taking EVERYONE else around you...taking care of your self quickly gets put to the bottom of the list. Being a mom is such a joy, loving your children and husband is precious, so most of the time you gladly put everyone else's needs first...but man it can be exhausting.


All of it just kept building up.  All of the above came crashing down on me this summer.  I know I put to much pressure on myself to get everything just right.  I have high expectations for my family, for myself.

All I really need to do is just surrender...

Meltdown

I had a meltdown of epic proportions last night.

A sobbing on the floor meltdown. A friend waiting in my driveway for a fun night out and I was inside having my meltdown. I had to send Jeremy outside to tell my friend I was not up for going out.

Lots of things building up, lots of stress, lots of pressure,...I will talk about later.
But all leading up to my meltdown of epic proportions.

Jeremy sat on the floor with me, held me, prayed with me.

A meltdown that was needed, just to let it all out.

Did the Botox help?

Oh yes it did.
I go into Brayden's room in the morning, on many occasions and found this:

His sweet little, chubby feet poking out from his blanket.

His legs straight and he is comfortable.  A huge difference from before the Botox.  He legs were tight, so tight he was in pain and we could barely change his diaper and clothes.

Now he stretches out his legs, it is some relief and he has been trying to straighten them all along.

Could he be more comfortable!?