Tuesday, January 27, 2015

Skiing with Brayden

Well, not really skiing with Brayden but he did sit in the lodge.

Yet another canceled day of school because of the winter weather.  Yet another day of nothing to do, with all activities canceled.  Jeremy was out of town.  It was a day with no nurse.  Carter and Luke wanted to go skiing.

A very last minute decision to load up the car with ski gear and head out.  Brayden loaded in as well.  But Brayden had other ideas, he was told that snow days meant lazy days in bed...so why was he out in this cold yucky weather?!
Brayden decided to let us know his dissatisfaction with being out...he let us know for the entire hour drive...on and off screaming...it was a very long drive.  Then when we are almost to the exit for ski slopes, Luke pipes up from the back of the car, "Mom, did you get our passes?"  I did not get our season passes for skiing, they were sitting in the kitchen...oh how I hoped I did not have to pay for skiing that day when they had passes sitting at home.  I was consumed with getting all of Brayden's gear for the day, it didn't even occur to me to get the passes.

We arrived and circled the parking lot looking for a handicap space.  I needed a space to unload Brayden and not have to navigate a couple flights of stairs.  Obviously there are not many handicap spaces at the ski resort.  And those handicap spaces were the "extra" spaces where the snow was pushed when clearing parking lots.  I had a choice of two spaces.  One space that was 1/2 covered with snow and the other that was 3/4 covered with snow.  And the snow piles were on the side of Brayden's door.

I pulled into the 1/2 snow covered handicap space, sticking out a bit so I could unload Brayden.  I have the handicap tag hanging from the rear view mirror. I barely turned off the car, when I realized an SUV pulled right up next to mine.  I rolled down the window.

A man (not a gentleman) asked me to move spaces.  I started to explain about the snow, trying to unload my son into his wheelchair, and the space I needed.  Well, that man was NOT interested in my explanation or anything I had to say.  He proceeded to give me a piece of his mind and had some choice words for me.  I was flabbergasted.  He pulled away in a HUGE huff, saying "Well, I guess I don't get to come today and will just to go home!"  Off he went.

I could not believe a grown man (about 50-60 years old), came up to a mom with three children in the car (a car with a handicap tag) and proceeded to yell/scold about parking...basically he deserved that space more than we did.  Not only did it fluster me, it flustered Carter and Luke.  They were upset and worried.  I tried to reassure them there was nothing we did wrong and there was nothing else the man could do...but just in case I reported it to the main office.  And we already had to go to the office since we forgot the passes, thankfully they printed ones for the day.

Finally in the lodge and it was packed.  Where to park and sit with Brayden?  Finally a family cleared a space for us.  They realized the difficulty of space in the lodge as well because the grandmother was in a wheelchair.  Their kindness was appreciated after the no-so-kindness we encountered in the parking lot.  Although,  I wondered if they may have regretted the decision since Brayden was not a happy camper for the day.

Carter and Luke had a blast.  Lots of time on the slopes together, trying out all of the slopes (I made them promise no black diamonds when dad is not here).  It was a cold windy day so I was happy to be in the lodge with Brayden in my lap keeping me warm.
After a long day, Brayden was exhausted...like he was the one skiing all day but apparently being very grouchy is exhausting.

Tuesday, January 20, 2015

How to Help

Over the past several weeks, we have seen several families go through great tragedy.  Tragedies that we just cannot understand.  I watched parents say goodbye to their little girl, Brayden's classmate.  They are an amazing family, that went through extraordinary events to get their daughter medical care (I hope one day to really know their entire story).  I have admired their bravery and acts of love.  I have friends whose children battle every day with serious medical problems, walking a fine line of being "okay" and needing to go to the hospital (and yes, sometimes that includes Brayden).  Watching your child suffer is an indescribable pain.  Families in our church trying to find a way to say goodbye to a loved one.  Friends fighting cancer. 

Some trials and tragedies are a sprint and other are marathons, without an end in sight (or an ending we like)...and those marathons can be exhausting, the adrenaline wears off and time can wear you down.

Talking with friends the other night, one who beat cancer and one who is in the trenches of treatment, we started talking about giving and getting help.  People want to help.  Your family, friends, neighbors want to show love and support in some tangible way.  But how?  Or maybe you do not know how to ask for help.

Speaking from experience, asking for help and accepting help is very difficult.  In the midst of the chaos, not getting sleep, grieving, worrying, trying to navigate bad circumstances, you don't know how you need help or how to accept it (especially if you have a type A personality).

Over the last several years with Brayden and talking with friends, I have learned some things...on the receiving and the giving of help.

Receiving help.
  • Let those around you help, really help.  When talking with friends they could not believe they became "that mom" with cancer.  They have been the person to help friends and now people are trying to help them?!  I know I felt that way with Brayden.  We are "that family".
  • Even though you feel like you can do it, you can't.  While physically you could take care of your family; many times you are emotionally exhausted.  Sometimes you need to let others take care of physical needs so you can be there emotionally or focus on the more important things or just even get rest.
  • There will be time in your life you have to let go of control...that may be harder from some than others.
  • You are not a failure because you don't have the energy or capacity to do everything.  It is not a sign of weakness, you are not perfect.
  • At the beginning of any hard situation, people are reaching out, it is hard to communicate with so many people.  Try sending out an email that others can pass on.  A website that people can check.  You don't even have to send out the updates, have a family or friend send out info (I know I wonderful Grandpa Fritz that fills in often when sending updates on D) and field all of the questions.
  • Food, let people really know what you prefer.  You can even put a cooler on your front porch for people to drop off, if you don't feel up to talking with each person that comes over.
  • Actually ask for help and you can be specific.  If you don't feel comfortable asking for help, have a friend or family ask on your behalf.
  • Know that you and your family are worth it, you can receive help.  There will always be others that may need it more than you, but there is a time that you need help as well.
  • Give up the idea that you have to reciprocate...one day she will carpool and the next day I will.  If you can't, then don't let that stop you from asking for help (this is my biggest set back).
  • And do not worry if you house is a mess...let people in to help, do not turn them away because you cannot keep up with the house.
  • Do not think you need to give everyone the details or talk with them about the situation.  If you don't want to talk about it, don't and don't feel bad about it.
  • Don't feel guilty about any of it.  You need help.
Giving help.
  • Most of the time asking, "What can I do to help?" does not get much of an answer.  It is NOT because the person does not want or need help.  Most of the time, they don't know what help they need.  They also do not know what kind of help you are willing to give and they do not want to inconvenience you.
  • Ask people close to the situation how you can help that person/family.  They may be able to offer better insight.
  • If you offer to help, do NOT expect to be-in-the-know.  Please don't offer to bring a meal, if you want to be nosey.  Even if you are nosey, try to hold that back.  A friend shared about a lady from church offered her a meal, brought it over, pulled up a chair in the kitchen and had no intention of leaving any time soon.
  • Do not offer advice, unless they ask.  My favorite type of "advice" is a winding story about how a friend's, grandmother's brother's wife had such and such and this is what they did. 
  • If you really feel like you have useful information, put it in a email, letter or text.  Because if it is actually useful, they will want to hold on to that info.
  • Do not stop trying to give help.  The grieving, pain, stress or situation does not go away by the time the meals stop coming.  You can even just say, "I know you have help now but I will check in with you in a couple weeks".  Then actually check in again and again.
  • If you don't know what to say, say that.  Just say I am thinking of you.
  • Continue to invite them to events, it is still nice to know they want you to be included.  We have a wonderful spunky friend, that invites us to so many of her big parties and we have only be able to go to one, but still nice to know she wants us there.
  • Do not expect good manners (like a thank you card or offering you something to drink).  Barely functioning through daily life, so manners are not really a priority. 
  • If you cannot offer a lot of help.  You can pray.  Send them a note or package in the mail, let them know they are loved.  Send an email or text.  Just let them know you are thinking of them.

Giving VERY specific help. 
  • Meals are the go-to way to help.  Most people offer dinner.  You could bring over things for breakfast or kids lunches as well.  And be prepared to ONLY drop off.
  • Send restaurant gift cards.  It helps if it is a place that offers delivery or take-out, send menus.
  • Offer to watch the kids, but be specific.  Say, "I can watch this kids this Friday night or I can watch the kids for the next appointment".  Or "I am taking my kids to the park, I can pick up yours".  You can offer to take the kids or watch the kids at their home, they are going through the situation too and sometimes leaving home is hard.
  • Even just help watch the kids so parent can take a nap or shower (I used to be so paranoid leaving Brayden unwatched that I would set up a place in the bathroom for him so I could shower).  You could even offer to sit with the patient at the hospital so they can go get food or run home to refresh a little.
  • Offer to get groceries (they can even order it online and you can pick it up for them, i.e. Harris Teeter) or run other errands...Costco can be overwhelming on a good day.
  • Drop off a coffee or favorite drink.
  • Offer to go with them and/or drive to appointments, even just go along for the ride (some appointments involve a lot of road time).
  • Offer to be a note taker, if planning appointments, at appointments, meetings, planning services, etc.  Having a extra set of ears that are not as emotional, can be so helpful.
  • Pack them snacks, magazines, easy reading items for hospital stays, appointments or even just as a treat to have at home. 
  • Offer to just go for a walk.
  • Help with homework.
  • Offer transportation for children's activities.  I know Carter and Luke did not participate in some things because I was not sure how to get them there or did not feel comfortable asking for a ride.
  • Do laundry at their house or take it to your house.
  • Send little surprises.  I have a wonderful friend that sends me that funniest things in the mail i.e. Calgon, take-me-away bath salt, an "I pooped" button (and if I need to explain this, then you haven't read much about Brayden).
  • Offer your expertise/hobby, if that is help with taxes, mowing, cars, handiwork around the house, house cleaning, etc. Again, be specific when you offer.
  • Set up a sign up for things other than food.  Include gift cards, mowing, laundry, child care, or other tasks that would be helpful to the family.
  • Take the trashcans out and back.  I know that being in the hospital, you can lose sense of time and would often forget trash pick-up days. Or clear off snow and ice, it is a wonderful surprise to arrive home and the driveway is clean.
  • Visit, call, email, text.  Give a listening ear, a hug or shoulder to cry on.  But be available when they are ready.  Do NOT expect a response back; sometimes returning calls, emails, etc. can feel like another task to try to get done in the day they do not have energy for or be up for talking.
  • Pray with them, for them, send encouraging notes.  It is so comforting to know that others are thinking of you and praying for you. 
Going through any big trials or tragedy can be very isolating.  People around you don't know what to say or what to do, as a result, many do not do anything.  Continue to reach out. 

I cannot say enough about being to be specific.  Opened end offerings (i.e. Let me know when I can help or Anything I can do?) are well intended but very hard for the recipient to know what to do with.

Give love, support and prayer, no matter the circumstance.  And continue to do it.  Please do not forget those running the marathons, a lot of help is offered right the beginning and over time it fades.

Saturday, January 10, 2015

The Big Blue Monster on Bad Wheels

Brayden's new wheelchair arrived.

We order this chair in February 2014.  A series of big mix ups caused delay after delay.  We ordered a different chair at first but was called by the equipment company and told it might not be the best fit for Brayden so we changed the chair.  I was not confident about what we were getting.

Many months later, we got word the wheelchair was finally ready.  Delivery day came and I watched them unload the chair from the truck.  At first I thought they were moving this wheelchair to get to Brayden's wheelchair...but no, this was his chair.

Let me just say, that in some strange way, getting new equipment (or even medical supplies) is exciting.  Getting new gear, making life easier for Brayden, etc. is exciting.

I did not have that feeling with this new wheelchair.  Immediately I felt disappointment.  At first it was because it was not visually appealing.  It is giant and it sparkles.  A giant sparkly blue wheelchair.  The bigger the wheelchair, the less attractive?  Nothing about it is cute or cool.  I can get over the disappoint with the look because once Brayden was placed in the seat, we could see how supportive and comfortable it was going to be for him.

Then it came time to take the wheelchair on the go.  I had to measure the back of our SUV to make sure I could get it in...it clears it by only a couple of inches.  It does break down, barely.  Just the back rest of the seat pulls out.  Then it folds down a bit.  Now I have to lift it in...thank goodness I have been working out, it is crazy heavy and awkward.  But I broke down the wheelchair and got it in.  Ready for its debut on Christmas Eve.  Jeremy unloaded the chair and I tried to put it back together and I couldn't do it, the harder I tried the less things seemed to line up.  After almost being on the verge on tears, I finally got it together (the chair and my emotions).

A couple of days later, we had the new wheelchair out for another run.  This time in an older church building.  I could not get this massive chair over a door threshold.  The front wheels of the chair are tiny and would not go over it...kind of like little T-rex arms, what good are they?  I could not pop-a-wheelie on the back tires, like we have done with Brayden's other chairs, jogger, etc. to get over thresholds and small curbs.  I could get over the threshold, if we went backwards.  Well, the hallway of this church was long and narrow, we had to start going out of the room and down the hall, backwards the entire way, just to get back out the door.

Then time for school and trying to get out of the house...over the threshold, on the lift, over the concrete lip of the garage door, etc.  The chair is awkward.

The handle bars are not the kind we asked for, they are short and we can barely hang his feeding pump equipment/bag without it dragging on the tires.

I know my attitude has to adjust to the bigger equipment but it has to work for Brayden and for us too.  We waited for 10 months, I had big expectations.

Calling the equipment company to see if we can change out the tires and handle bars.  And using it more, we will get more comfortable with it.  Ugh, why isn't this getting easier?

Friday, January 9, 2015

Bone infusion side effects

Just like after his first infusion, Brayden had a fever for a few days.  Which was accompanied by terrible seizures, the ugly kind (as if any seizure is pretty, but Brayden does have some that he smiles).  Brayden could not stop seizing.  Time to bring out the big medication.

He would sleep and then wake up with more seizures.  We were trying keep the fever down and him comfortable, and even trying a very long shower.

I tried calling the neurologist but could not reach her.  12 hours has gone by since the big medication and Brayden was still struggling with seizures so we gave him another dose.  I sat with him for hours, watching.  He finally found rest for the night, still with a bit of seizures but much better.  We did everything we could to avoid the ER.

Did I mentioned the mess with the weather?  Snow/sleet was pouring down, right at bus time one morning but school was not canceled.  I rushed Luke down to the bus stop, had Carter watch Brayden while he was seizing.  Luke's bus never arrived (I only waited 15 minutes) so I brought him home.  Brayden still seizing.  It was time for Carter's bus, but I was not going to leave Brayden again.  I could not drive the boys to school with Brayden in this state.  And Brayden's nurse just called, that she was turning around and heading home after driving an hour and making no progress.  I decided to keep Carter and Luke home, much to their chagrin, they actually do not want to miss school...but their disappointment was eased when I told them they could go play video games...I really just needed them out of the way so I could tend to Brayden.

Stressful day.

The next couple of days, Brayden was MISERABLE.  Really a big hangover.  Hangover from all the seizing, heavy medications, fevers, and achiness from the bone infusion.  By the evening we saw his arm, where the IV line blew, was extremely swollen and red...not good.

Of course this happens after office hours so I get to call the on-call ortho.  The ortho sounded like a young guy (and I said, "Oh, I am sorry I was waiting for the doctor"), that I had to explain pamidronate and why we had to call ortho.  His advice was to go to the ER (thus why I never want to call the on-call)...well I was not going to do that so I tried contacting others via email.  The gal that oversees the infusion clinic emailed me back.  We had to keep his arm elevated and needed to see the pediatrician, just in case.  The pediatrician did not see anything to terrible, it was just going to take time and we had keep it elevated because we noticed that when his hands were down or his was sitting up right it caused the swelling.

My poor boy.

Monday, January 5, 2015

Second Round of Bone Infusion

It is time for Brayden's second time with the Pamidronate bone infusion.  He has been started on this infusion, to be done every three months for an indefinite amount of time.  Brayden's bones are very soft, as the doctor said, "like butter".  He has had several problems with bones breaking and not healing.

Brayden was taken off the ketogenic diet, given supplements and started bone infusion.  It will take time to see real improvement.  But for now, he has not had any broken bones for several months (at least that we know of, he had fractured vertebrae that we did not know about).

Time for the second infusion.

The day did not start very smoothly.  About an hour in to our drive (Children's in DC is not that far but morning traffic makes it a long drive) to arrive for 8:00 a.m. check-in time, we got a frantic call from the gal that runs the clinic.  The infusion schedule was over booked, by a lot, could we come back another day?  I tried my best not the freak out on her.  We had been up, getting Brayden ready to go, since 5:00 a.m.  Jeremy (thankfully was not on travel) stayed home to get Carter and Luke off to school.  And I coordinated other appointments based upon this infusion.  I begged her to fit Brayden in.  All she could offer was to drive in and we could see if they find a space for Brayden to get the infusion.

Thankfully we arrived before most of the others on the schedule so Brayden had a bed (we eventually had to share a tiny room with another patient).

Then the waiting begins.  Waiting for the pharmacy to prepare the pamidronate.  Waiting for the IV team to arrive.  All was finally ready.

The pamidronate infusion was started...and Brayden started to cry and SCREAM.  They immediately thought the IV line went bad, which is something quite typical for Brayden.  We waited for the IV team to come back.  They fiddled with that line and thought it should work.  The infusion was re-started (hours after being there).  Brayden finally went to sleep.  The infusion team comes in every 45 minutes or so to do the vitals and check things over.  About an hour into the infusion, the nurse comes to check, she pulls back the blanket to check the IV, then dashes out of the room.  I knew something was not right.  I rolled back the blanket to look at Brayden's arm (I sit in the bed with him), it was gigantic and hard.  It looked like a fake wax arm.  Obviously the IV line went bad and the pamidronate was just being pumped right into his arm.  The team came back in and pulled back on the line to see if they could removed any of the fluid and waited to hear from the pharmacy.  Thankfully the pamidronate would eventually be absorbed by the arm tissue. 
The infusion was on hold again.  The IV team came back to do another IV line, this time in the other arm.  The infusion was started again.  Did I mention the infusion takes about 4 hours being hooked up to an IV, pumping in the medication? 
Brayden's bad arm was still very swollen, it had to be elevated and with a heat pack.  After all the mess, he went back to sleep.

What a long day.  Finally the infusion was completed.  Now time to head home, watch for the side effects of the infusion (fever and possible seizures) and his swollen hand.